My Neulasta Rant

Update: Please note JackieG’s very helpful comment below, where she describes how taking Claritin might help your Neulasta pain! Thanks for the tip, Jackie!

So. Neulasta. My best friend and my biggest foe during chemo. Here’s my deal: everyone says Neulasta is the best thing ever because it works “every time”. Well I’m sorry but it doesn’t. Furthermore, the side effects for me were the worst part of chemo at the end, and all for nothing!

As I said the other day, chemo #2 found my WBC super low as well. In fact, I spent one night with fatigue so bad that I could not get up to get a glass of water. Well, I could have tried but I feared passing out. Talking too much had the same effect. All of this made me quite whimpery because my boyfriend and best friend just didn’t seem to get how I felt. Eventually my temperature began rising. I had such fear of returning to the hospital. I went in the bedroom and lay down all night, keeping an absolute vigil over my temperature and putting towels full of ice on my head when it rose. Call me crazy, but I seem to have kept the temperature at bay this way.

Chemo #3, I admit, was awesome. I took the Neulasta, and though the side effects were worse this time – not just bone pain, but headaches and the worst nausea ever – it worked as promised and my WBC never went below 4000. Although the day after Neulasta was the pits, it was all worth it. Chemo 3 was a cake walk. Thank god because it really gave me hope for the rest of my drips.

Never again would it work so well. Chemo #4 found Neulasta still making me feel indescribably horrid for two days, yet still my WBC nosedived to 1000 or so and didn’t come back up until just before my next chemo. I called the doctors several times, always feeling like it wasn’t working. I kept getting the standard “it sometimes take a week or so to work. You’re fine.” They didn’t seem to get it didn’t seem to be working at all. I asked on line and other women gave me the same answer. But when it DID work for me, I knew it. I could feel the difference. It worked the first week. It worked for chemo #3. Otherwise, I dragged on in fear of neutropenic fever until just before my next drip. At 1500 euros per shot (!), and days of hellish side effects, this seemed like a waste.

Finally I went to my oncologist in person. I told hi my concerns, I got the same “umm hmm. Don’t worry. It’s works. It can just take a while.” I told him my history several times and somehow, finally, I showed him the paper work for week after week after week of low WBC. He did a double take and seemed alarmed.

“Wait a minute….This is impossible, but it doesn’t even look like it’s working for you.”

I felt vindicated. “That’s what I’ve been saying for weeks!”

He gave me a serious look. “Do you know how much this stuff costs?” I told him I did. He repeated the figure anyway. “Do you know why we pay such a ridiculous sum every time?….Because it works. Because it’s guaranteed. That’s why. But you…I cannot believe this. I’m going to have to contact the pharmcutical people. I will talk to them and get back to you. I’ve never heard of this before.”

All of this proved my feeling that, as serious as chemo is, and as good a service as one generally gets, after a certain point people stop listening to you. They assume they’ve heard it all. They assume that you don’t know what you’re talking about. It’s so frustrating.

My doctor called and emailed the company that makes it. They never got back to him about me. To my great disappointment, Dr. Awesome merely said, “Oh, yeah. They never got back to me. Oh well, we’ll just give it to you again and see what happens, then decide for round 6.” I couldn’t believe he was so accepting of them not answering his questions! In return, my only recourse was to think, “Oh well, welcome to Belgium. The land where people are used to being ignored.”

For chemos #5 and 6 it again did not seem to work, and the side effects got worse and worse. Now, after each chemo I didn’t get sick at all from the drip, but the Neulasta shot would put me on the couch practically unable to move with bone pain and intense nausea for 3 days. I swore I was going to refuse the shot for my last chemo round, but in the end I took it, on the small chance that it worked.

To all the people who argued with me that I was impatient, that I had to give it perhaps up to two weeks to work, I ask, what’s the point? If that’s considered “working” then I don’t get it. If the whole idea is to keep us from being hospitalized with neutropenic fever, it’s stupid to give us an expensive drug that makes us feel like ass and still leaves us unprotected for up to two weeks! I could be in the hospital by then!

I’m not trying to bash it. Apparently it’s great for many many many many women. Hallelujah for that! And if anyone understands more about this drug and can explain that I have misunderstood something about it, I would love it. In fact, I would much prefer to feel that I was wrong than to think there are women out there like me who were being left vulnerable and not listened to.

I know nothing is a panacea. And I don’t expect it to be. I’m just not sure that, when it comes to Neulasta, everyone else remembers that.

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171 Comments

Filed under breast cancer, chemo, life, medical testing, this time LAST year

171 responses to “My Neulasta Rant

  1. Erika

    Hi! I was wondering if you could share some new hair pics. I just finished chemo. for hodgkins lymphoma and I am waiting and wondering when my hair will grow to a presentable length. Thanks so much.

  2. Susan S. Jorgensen

    Neulasta is hell. Plain and simple. I, too, was sicker from it than from my chemo. I’m sorry you have suffered so. Sometimes the best and only thing we can say about hell when it ends it that it ends.

    • susan stetler

      First time I had Neulasta I had a lot of pain. Second time I took Claritin the day before and for the next five days. Very minimal side effects this time. Almost no pain. Try the Claritin! It sure worked for me. Neulasta is also working – white blood count is good.

  3. Brent

    Thanks for sharing your story. My wife is having the SAME issues with Neulasta (worked first time and then WC down after each other treatment). I appreciate what you have been through and hope you can get on with your life. Thanks again and hope Brussels is still alive and kicking.

  4. Barb

    my aunt has plasma cytoid leukemia and has very low white blood count, low red blood count and very low blood platelet counts. She was given the neulasta shot on 9/15/08 and as of 9/24/08 we have not seen the white blood cells increase. Can anyone answer the qeustion as to how long does the neulasta take to work? or do most of you feel it just really does not work? she has had very few if any side affects from the neulasta.

  5. carlo

    I have been asked to give neulasta to a friend who is going though tx for breast cancer and we are all scared . Does everone have to do their own injectons? By the way your hair looks great!

    • susan stetler

      A visiting nurse came to our house and showed my husband how to give the Nuelasta injection. He gives it to me inthe upper arm right at home the day after chemo. Very convenient. One less appointment to have to keep!

      • First, Let me apologize for taking so long to approve these last comments. Over the holidays I was hardly online at all (which is sometimes a wonderful feeling)!

        As for the Neulasta shot, the Belgian health service sent around a nurse to do it for us. There’s a certain kind of nursing service and that’s all the kind of thing they do. The came round to clean my original mastectomy wound for the first week or so (taught us how to take over), then also came round for my shots if requested. It was awesome.

  6. Pam

    I too am taking Neulasta, the day after chemo I go in and get a shot in my stomach. I’m okay for the 1st and part of the 2nd day, but after that I ache horribly, and am fatiqued for about a week.
    I believe this drug is worse than the chemo. So far I haven’t had the nauseasness. I have 5 more treatments to go and I dread each one because of this shot the day after.
    How do you check your WBC at home?

    • susan stetler

      First time I had Neulasta I had a lot of pain. Second time I took Claritin the day before and for the next five days. Very minimal side effects this time. Almost no pain. Try the Claritin! It sure worked for me. Neulasta is also working – white blood count is good.

  7. isaac

    my father will get his first Neulasta next week. Reading what you had said above scares me. However, going to chemo and talking to the “medical professionals” looks like a waste of time. It does feel like that don’t know what to do with us. They have no cure, no hope, just Chemo. Is this the only answer to getting better? I do think that there are many other options, which are not being provided to us, from a fear of pharma. companies who are controlling and dictating the market. Good luck to all of us.

  8. Thanks for sharing your experience. I have had only 2 chemo treatments so far and had to have the neulasta last week after my second treatment. I too was okay for the rest of that day and the early part of the following day. Then the severe bone pain started, I was in bed in tears for 4 straight days. Then the pain eased a bit and the nausea started and the headaches. It’s been 6 days since my shot and the bone pain is still terrible. It keeps me up at night and in pain all the time. I thought I was going crazy until I saw this wesite and read some of the comments. I pray I don’t need this shot with each treatment, if so it’s going to be a long painful road ahead for me as I have 10 chemo treatments to go for Hodgkins Lymphoma.

    • Vicki Chittenden

      I took my first chemo on the 10th with the Neulasta shot the next day. I was not warned of any side effects. On the 3rd morning, I woke up with a weird twinge in the L4 L5 region of my back where I had major back surgery 2 years ago. I have been totally with back pain since. It was raining and I told my husband that it was a weird twinge and we wrote it off to the weather. By noon, I was getting more uncomfortable. I had a Look Good Feel Better class I went to after lunch and I could not stay seated. The was building so much. When I left, I was fearing my back was giving me trouble. I could barely drive home. I called the Cancer Institute and they said to come and do a blood test. They still did not tell me this could be a side effect. They said my levels were fine so I drove home. I was not sure I was going to make it home . I called my husband at work and he came home and took me to the ER. I have a very high pain tolerance. I could not find ANY position that was bearable. They gave me a morphine shot and it barely took the edge off. They then gave me a shot of valium and it finally started to ease up. For 3 days I had to take pain killers and Flexeril for spasms.
      Today, I went in for my pic line to be flushed, and I asked about the shot. The lab technician told me unfortunately, it is aside effect.
      I was so afraid I had herniated a disc but couldn’t figure out how I had done it and did not feel I could bear another back surgery.
      So now I will be armed with meds to counteract these side effects. I just pray it won’t get any worse. It would be nice if they would give us a heads up so we can know what to expect.

  9. Judy

    Am I glad I found this site! My Dr. wants me to go on Neulasta but after I found out my cost for just one shot (and I only have to have three) I told him no. I was prescribed ciprofloxacin which is an antibiotic after my first chemo. By the time of my second chemo my white count was up where it belonged. But he still wants me to do it. Unless the antibiotic stops working I’m sticking to my guns! Thanks for the insights to what noone bothers to tell you!!

  10. Elaine

    I am being treated with CMF for early stage breast cancer. I received my first shot of Neulasta the day after the first CMF – the bone pain started and was pretty bad, but the nausea was worse. I didn’t know if it was the chemo or the Neulasta. But, here is where I ran into trouble – fully ten days after the Neulasta shot, I developed hives, big ones, right around where the Neulasta shot was given. As an RN, I knew to call the hospital, but they said it wasn’t possible that this could happen 10 days out. So I took pictures of my arm. It was red with hives from the elbow to the shoulder and itched for three days. When I went for my second round of chemo and showed the pictures to my oncologist, she showed them to the head of dermatology and it was decided that I had, indeed, experienced an allergic reaction to Neulasta and was cautioned never to take the shot again. I am now still on CMF, but without the Neulasta, and we will check my WBC before the next treatment. The chemo was nothing without the Neulasta – less nausea, no bone pain, little or no fatigue. I think more people should know that there can be a delayed reaction to this drug.

  11. Lisa

    After reading your posts about your experiences with Nuelasta, I don’t feel all alone. I am currently in treatment for stage 2 breast cancer and after my first iv infusion, I was instructed to return the next day for the shot. When I was given the shot I was told I might have “some mild bone pain”. Boy was that ever an understatement. The next morning I woke up and every bone in my body felt like it had been broken. I had pain severe enough that I cried the first 4 hours after I woke up. I finally was able to call my son into my room and he gave me a narcotic that had been left over from a back surgery the year before this particular adventure began. The narcotic relieved the pain for about 4 hours and intensified again until I could safely take another pain pill. After 3 days the pain finally went away. My white blood count did drop very low the week after the shot, by then my tongue had turned white and furry and I was so tired that I had trouble holding my head up. My doctors response was “sometimes this happens” and she assured me things would get better. Finally my counts rose into the normal range by the second week after the shot. I did speak to my oncologist about my concerns and hesitancy about taking the shot for my next dose of chemo ( I am due to recieve 6 doses of chemo prior to any surgical intervention, with the possibility of radiation and maybe more chemo after surgery). My doctor felt that it was in my best interest to get the shot again,because of the precipitious drop I already had earlier followed by a good recovery. I got the second shot of neulasta and again experienced the same pain, but this time it lasted 5 hellish days. This frightened my to the point that my sister called the doctor. Her response was that while pain following the second dose was expected, it was uncommon for the pain to be worse, but certainly within the realm of possibility. Advice: double the pain meds I happened to take the last time and call her if the pain did not go away or decrease in severity. By morning the pain was still there but not as severe as the night before, but did continue another 3-4 days then gradually went away. I just had my 3rd chemo today, that I always dread, but not as much as what is coming tomorrow. Before my chemo today I was asked if I had been having any fevers, because my white counts were extremely high this time. I assured the doctor and the nurse that I take and record my temperature religiously every morning and the highest it has ever been was 98.4 degrees 2 weeks ago. I have renewed my pain med and will have them on hand. I can only hope that the time it will work but with less pain. I have 3 more doses of chemo due, but also 3 more doses of neulasta as well. YUCK!

  12. GL

    My 80 year old mother was diagnosed with AML leukemia in 12/08. She just completed her 2nd cycle of chemo (Vidaza) and received the Neulasta yesterday. She is very sick today. I read somewhere on the Internet the Neulasta should not be given within 24 hours after chemo. Has anyone else heard that?

    • B Thome

      I am a chemo nurse, and our guidelines say very strictly that Neulasta is not to be given within 24 hours of chemo. A second reason we do not do it, is if you have a reaction, we don’t know if it was the neulasta or the chemo causing the effect. Separating them with time aids in accurate diagnosis of side effects.

  13. Kathy

    I have so far had three chemo treatments for lymphoma. I’ve had the Neulasta shot after each one. I had absolutely no negative reactions to the first two shots. After the third chemo and shot, I developed terrible pain in my rib cage and back about three days later. Because I had no reaction the first two times, I did not relate this pain to the Neulasta at all…thought I had strained muscles or something but the pain was severe. After two days of taking Vicodin with no relief, I called the doctor’s office. My chemo nurse immediately suspected it was bone pain from the Neulasta and told me to take Aleve which shocked me. I told her the narcotic hadn’t touched the pain, and she said it probably didn’t, but that the Aleve worked much better on this type of pain than anything else available. She was completely right. I started taking Aleve, two at first and then one every eight hours, and the pain has been almost entirely gone, only beginning to return after about an eight hour time frame when I take another Aleve. I couldn’t believe an over the counter medicine worked this well, but it did. The Neulasta seems to increase my white cell count, but it seems to take a week or so. It’s also impossible to know what my white cell count would be without the shot, so I plan to continue to have them.

  14. Indiangirl

    I had breast cancer diagnosed 11/07. I had the double mastectomy and started chemo in January. I had 4 rounds of 2 kinds of chemo every 3 weeks. After each treatment I too received the Neulasta shot. Today 2/12/09 I am still in so much pain in all of my joints and especially my hips and feet. The last Neulasta shot was the end of March. Is this still from the Neulasta or nerve damage or both. Cancer and the side effects of chemo suck. But it’s worth it to not die.

    • Tami G

      I was diagnosed with uterine cancer (leimyosarcoma) on 4/29/09. I have my first round of chemo this Thursday with one drug, then next Thursday the same drug along with another and the following day I am to receive the Neulast shot. I’m not sure if reading all these comments was a good idea or not. Today I spoke with a friend who just battled breast cancer and she ask if I was receiving “the shot”. Her experience was not at all like any of yours, but that she did lay low for a couple days because of bone pain. I was happy to know it wouldn’t be a bad experience until I stumbled onto this site. Now I’m dreading it. One good thing is that if I have the horrific experiences some of you have had, I will know what it’s from. I’m hoping mind over matter, but will ask Thursday if I should try the Claritin trick or wait and see how I react. Thanks for sharing all your experiences! Wish me luck.

      • Tami – just wishing you luck! Let me be clear – Neulasta sucked, but I did survive! And everyone is different. I’d recommend you take it first and see how you go. Then you can tackle your reaction/symptoms from there. Don’t let us freak you out in advance! You might just breeze through it!

  15. JackieG

    I too am going thru chemo for Metastic Breast Cancer. I’ve had my 3rd chemo with as many Neulasta shots immediately following the next day.
    The chemo was a piece of cake, however, the shot (dubbed DNS, dreaded Neulasta shot) left me in horrific pain, which didn’t subside for the first 48 hours. By the 3rd day, it would start to diminish.
    I googled ‘Neulasta Shot Pain” and found a blog where folks discussed the pain from the shot. One of the remedies mentioned was taking Claritin the morning before receiving the injection. I thought to myself, what can it hurt? The pain is so unbearable, I’m ready to try anything. So, I did. I am amazed!!! The little tiny Claritin pill took away 75% of the pain. I was able to manage the rest of the pain with Advil. In fact, I only took Advil once the day after the shot. Who knew, something prescribed for alleriges would also relieve the worst kind of pain.
    I am sold on it, and will recommend it to anyone taking the Neulasta shot.
    No more writhing in pain for me!

    • WendellK

      I am so happy I saw your post. I received a new chemo, Texetere, on last Thursday for stage 4 metastatic lung cancer and was told to return Friday for a shot of Neulasta. I was concerned about the side effects the oncology nurse told me about related to the bone pain. The oncology nurse had told me I should ask for a strong pain reliever, but the doctor told me to take Tylenol and go to the emergency room if the pain got too bad. I stumbled onto this site Thursday night and saw the report on Claritin D. Friday morning, on the way to work, I stopped at the drug store and picked up some Claritin D. I took one pill at 6:00 AM and received the shot of Neulasta at 8:00 AM and spent the rest of the day active at work. The only bone pain I noticed was in the shin area if my left leg at 3:00 AM Saturday morning that lasted for 30 minutes and was not too severe. After 30 minutes I went back to sleep for the rest of the night. Saturday morning I went to the bank and shopping (lots of walking) with my wife with no pain. In the afternoon, I changed the blades on my riding lawn mower; still no pain. This morning, Sunday, at 6:00 AM I am still pain free. I have been taking one Claritin D pill two times daily. I have not taken anything else for pain. I recommend anyone considering trying this to check with your doctor before doing so in case the Claritin D would have an adverse effect on some other aspect of your condition or treatment. Good luck, and thanks.

      • That’s such great news, Wendell. Thank you for sharing, and the best of luck with the remainder of your treatment. Please let us know how you are when you can!

    • My wife’s oncologist recommended Claritin the day of the Neulasta shot and for two days in succession after. My wife is on chemo once every three weeks and is now on her third, of six treatments. She had a lump removed and also has the HER-2 gene, so her treatment is going to take one year. The doctor included an anti-nausea component in her last two treatments and that has helped her day-after problems. This anti-nausea injection lasts three days and then she takes anti-nausea pills for several days and as-needed. We had hoped the symptoms would get better as she went along–no such luck.

  16. Angie

    My boyfriend had his first shot on Wed. it’s now Monday. It’s horrible to watch him in so much pain. It’s weird that all these drugs they prescribe save your life but make you feel like you want to die at the same time.

  17. Ginny Brown

    Oh boy, shouldn’t have read all this! I’m due for a shot of Neulasta today after having the first of the latest chemo (Alimta) yesterday, for stage 4 lung cancer which metastised to the adrenal gland above the kidney.
    But I’ll get some claritin and aleve before I go back to the clinic this morning.
    Also on a steroid which really messes up sleep for me & last night for the first time in my life (67 yrs)
    I took a sleeping pill. It worked for about 4 hours the couldn’t go back to sleep but it beat the 2 1/2 hours the night before.
    Whatever it takes is what I’ll do, I’ve been in on again/off again treatment with other chemo as well as radiation therapy for 6 1/2 weeks for the past 11 months. Feel strong and hopeful but do get more tired than before the diagnosis.
    Thanks for all your stories. Ginny

  18. Trina

    Wow!! I’m getting my first neulasta shot tomorrow; and after reading about the side effects I’m a little nervous too. I’ll stock up on my claritin,
    which I take anyway for Hayfever……. Thanks for the tip! I just had my 2nd round of chemo today. Other then losing my hair, I’m doing okay with the chemo part of this breast cancer journey. I just hope and pray that I don’t get super sick from the shot!!!! I do lean on God to see me thru the hard times and it really helps!
    With that said………….. GOD BLESS YOU ALL

  19. Trina

    I have my first neulasta shot tomorrow and after reading about some of the side effects I’m a little nervous! I already take claritin for my Hayfever so I hope and pray that will help! I do believe in the power of prayer! So far through my “Dance with breast cancer” I’ve done okay. I cut my hair before I started chemo. I donated 14 inches to “Locks of Love” , got a really cute cut. Then the day before my first chemo I got it cut really short, that was fun too, spiked it and had fun with it. Will about 2 weeks later it started falling out Big Time. So the next step was a shave. So far thats been the hardest part…… going from butt length hair to no hair. But I know it will grow back again and I’ll have fun with it at every length!
    And then when its really long again, I’ll donate it again.
    God Bless each and everyone thats reading this!!!!!
    P.S. Thanks for the tip about claritin!

  20. Lisa Jensen

    I need help with finding answers with regards to dealing with Neulasta pain.

    My aunt is going through chemo and has been taking Neulasta injections as well.

    Today she said the pain that is going straight to the bones in her legs is so horrible that she feels like she wants to die. Does anyone know of anything she can take to decrease the pain?

    It seems incredibly ridiculous that her doctor only prescribed 800 milligram Motrin for the pain. Any suggestions or help would be greatly appreciated. You can email me directly or reply here. Thanks!

  21. Karen

    Going thru my second bout with breast cancer-almost 5 years to the date. This time I’m on Neulasta. Talking about misery. It’s been over 1 week now and my jaws still hurt, food taste terrible and the nausea is still there. The chemo treatment was great, but the side efforts from the shot is horrible. This time treatments are every 3 weeks, unlike every week as before. The stomach cramping, vomiting and just “dead to the world” feeling is exhausting. There has got to be something else out there to raise the WBC. I will try the Claritin as well, thanks for the suggestion.

  22. Debbie

    Diagnosed with breast cancer in April 2009..surgeries June 2009, started chemo July 2009, last round of chemo 4 treatments Aug. 2009. I experienced the hives from neulasta after my first chemo treatment 7 days or so after, the dr. said it couldn’t be from the chemo, experienced side effects, headaches, diarrhea, and bone ache starting in the neck…first week after chemo treatment…the symptoms got better, till the next treatment….turns out I don’t think the side effects were ever from the chemo, but from the neulasta, took a write up of side effects from the neulasta to my oncologist and he made a note that I was allergic to it…all the side effects I experienced I think were from the neulasta….but all said and done, just started radiation but it’s been since Aug. 30 since my last chemo treatment and still the hives are still present in my system. Mind you didn’t have the hives until after I started chemo….It is very frustrating knowing that they are still there. Some days better than others, am going to go see my primary care to see what she has to say….of course, when the hives first started went to the er twice within two days of each other…knew something was wrong, but wasn’t sure what I could take, keep benedryl on hand and fully stocked although that can only do so much, but for those with the irritating itching, benedryl makes a gel that helps to soothe that irritation…works great, but still would rather have them gone, I say the hives are worse then the chemo itself or any of the other side effects, and I know for one how frustrating they are and wish they would be gone, especially by now!!

  23. Sara

    Undergoing chemo for endometrial cancer as well as two breast tumors. I get Neulasta the day after each infusion and take one Claratin at least a few hours before the shot, which I’ve heard prevents the bone pain and other stuff and I’ve never had any side effects from Neulasta, however it has never worked for me anyway. One week after the shot my blood count is awfully low and doesn’t get up to normal until before the next infusion. What’s the point of having such an expensive shot if it doesn’t work for me?

  24. Hehe am I honestly the first comment to this awesome post!

  25. Kimmer44

    girl i am so sorry you had this horrible experience. it just confirms my decision. I have a type of ovarian cancer – diagnosed June 7, 2010. first chemo july 29th, second chemo today august 19, 2010. First chemo, my absolute neutrophil count dropped to 360 at week 1. so i was put on neutropenic precautions. mind you, i lost my job due to exhausting my 8 weeks of sick leave; now i pay cobra insurance that was 161 US dollars when i worked, and now it is 728 US dollars with no income coming in. using up my savings fast.
    My oncologist told me today i need neulasta shots tomorrow to boost my white cells. THEN the nurse came in and told me my copay for the Neulasta shot would be 200 US dollars!!!

    I said _NO – i cant do it – cannot afford it – and have heard too many side effects from this shot. and oh my gosh – now i know i will refuse the shot. period. end of story.

    thank u for your posts – i have to take a very strong narcotic a step down from morphine to control my chemo pain for a week – i cant imagine adding on top of that SCREAMING BONE PAIN AND SEVERE HEADACHES, ETC…… I AM IN CHARGE OF MY BODY AND I WILL TAKE CHEMO BUT I REFUSE TO SUBJECT MY BODY TO ANY MORE ABUSE THAN I HAVE TO – SO I WILL STAY HOME AND DO MY BEST TO AVOID GETTING SICK. WITH LOVE, KIMMER

  26. Al G.

    I’ve been fighting a recurring form of non-Hodgkins lymphoma for a year and will have a bone marrow transplant in December, God willing. (I was delayed by a coronary by-pass operation.) I’m one of those who’ve suffered no pain from the Neulasta, but it takes about 10 – 14 days to take effect (I’ve been told), and it does seem to take a very long time for my white cells to come back, AND the red cells, AND especially the platelets. One explanation is your age (I’m now 66). Another is that, after 8, then 2 more, chemo treatments, the bone marrow gets rather insulted and fatigued. I wish you all the very best in your fight.

  27. PattyCake

    I just had my first Neulasta on Tuesday and now it’s Thursday and I’ve been in constant bone pain ever since, last night couldn’t even sleep at all. Doc told me to take Claratin-D and I did, THE FIRST NIGHT, and then slacked off and I probably shouldn’t have because I think the pain overtook me. It is incapacitating, I can barely get into the shower, I have no quality of life from this shot. I hate it, but I’ve also heard it sometimes doesn’t happen after the first shot (the bone pain). I, too, wished I could die last night, the pain is so intense. But I must forge on. And I will. Just maybe not with Neulasta.

  28. I have a low white blood count, and the next time I get a cbc the white blood count is high. doctor wants me to get neulasta shot to see if it will even out the levels. I do not have cancer or any other srious illness, but when I get sick with a cold it turns into a big deal , like pneumonia or bronchitis or coughing so bad that my ribs pop out. doctor says with this injection it will help boost my white blood cells and help me not get a serious cold or infection. I have read all of the side affects and everyone’s experience while on this injection , I already suffer with migraines often , and have some bone pain with my scoliosis, so I’m just wondering is it worth it to try this injection? how much does each injection cost ?

    • Hi Rebecca, I’m sorry to hear about your wbc issues. While I wouldn’t dream of being able to advise you i this regard, I will admit that Neulasta is very expensive. I got my shots in Europe, so the pricing may have been different, so I don’t want to potentially misinform you. I was lucky, being on a socialized health care system at the time and they paid for it in total.

      Check with your insurance as to whether they’ll cover it and how much and be frank with your dr that you’re concerned about the price. That being said, if your colds 9etc) turn into big medical deals, it may be worth the price in the end. And if insurance will cover a substantial portion of it, it’s worth a try. Perhaps your own symptoms won’t be so bad as some of us here. And perhaps they’ll go away after a few tries. Just a thought…

    • Neville

      Rebecca, I realize that this reply is 3 years late, and your may not have the same issue anymore, but you should ask about LDN (low-dose naltrexone). It is supposed to work wonders for regulating immune system function. It also (in the low-dose form) has applications for MS and some cancers. It is not very expensive, a little over $1 per day right now for us (in Texas).

  29. Freddie

    I have had my last treatment with neulasta this is the worst of all my leg are very stiff, it gives me shortness of breath, I have no appicate to eat . I can only makea three to ten steps.before I to get something to sit on. The stiffness I realy can take , it also givesme a stiffnes in my right hand. I need to know how long it takes before the animal wears off your body. I been advisemy my dr. to take radation, but if the radation is going to make me feel like this I really do not need it. It’s my body, and I know my body. I will rather take the herbal medication than that poisen they are putting into your body.

    • Freddie – Radiation is nothing like chemo. While it has to be said that everyone can respond differently, radiation was a 15 minute nap each day. And I am not exaggerating. After a while my skin got a bit red and burned, but it didn’t even register as a nuisance.

      Hang in there! You have come through the worst of it, by far. Congrats on finishing chemo. You are at the end of that tunnel. Hurrah!

  30. Sonya Agnesi

    11 May 2011
    Hello, fellow sufferers and survivors:
    I thank whoever started KillerBoob for this opportunity for us to air our cybertonsils about the treatment of this scourge.
    After living a pretty active and healthy way of life, with no history of any type of cancer in previous female generations on both sides of my family, I felt a lump in my left breast before my 78th birthday in late Oct 2010. At first I thought it might be another benign tumor, like the two fibroadenomas removed from my right breast 40 years ago. My primary dr in the internal medicine group of a major state university, referred me to its breast center. After they lost the referral for three weeks, I was seen and a mammogram taken on 10 Dec. A fine-needle biopsy of the tumor confirmed malignancy. As if that were not bad enough, the energetic technician wrenched my left shoulder so badly while positioning my breast between the plates, that my rotator cuff was torn.
    During the delay between referral and actual diagnosis, the primary tumor spawned two offspring (my nationally known oncology dr diagnosed pleomorphic lobular carcinoma). So many fine-needle and core biopsies were taken that I felt like a voodoo doll. I considered threatening my surgeon at gunpoint to ‘either s–t or get off the pot’, and perform a double mastectomy, no reconstruction, on 19 Jan 2011. Though there was nothing wrong with the right breast, I didn’t want it to develop a malignancy later. She also took two sentinel nodes and one non-sentinel node. Frozen section and detailed pathology found all three to be tumor free. Stage IIA.
    Since the immunohisto stains of the biopsy tissues indicated that about 30% of my tumor cells carried estrogen receptors, my oncodr put me on the anti-estrogen letrozole, a cousin of tamoxifen. Meanwhile the
    tumor tissue was run through the oncotypeDX assay, a genomic analysis to guide future chemotherapy. After we received the assay results, Dr R had me stop the letrozole for a week, then put me on the CMF regimen, that she said is standard for postmenopausal women in early-stage breast cancer. The first of 8 cycles spaced 3 weeks apart started on 31 March.
    With relief I verified her prediction that the side effects would be mild, mainly a touch of constipation, occasional insomnia, and slight thinning of hair. When my blood was taken the day before the second infusion, the neutrophil count was 350 instead of at least 1000, so I was given a 6-mg shot of Neupogen into my abdominal fat pad and sent home. Very little bone pain and no fever, even though my marrow was so active that the neutrophil counts zoomed to 10,ooo overnight! Side effects of the second infusion the next day exactly like the first.
    Since the breast-center handouts contained zero, zip, zilch mention of either the small Neupogen or its gargantuan brother Neulasta (a polyethylene glycol molecule added to a Neupogen molecule to slow its entry into the bone marrow for longer-lasting stimulation of neutrophil production), let alone side effects, I calmly went to the infusion center 4 days after infusion for my first Neulasta shot. It felt more uncomfortable than the Neupogen going in. About an hour later, as I was standing in a commuter-packed train, I suddenly felt as if a giant vise had grabbed and was squeeezing my chest. I started to hyperventilate, thinking that perhaps my hitherto healthy heart was being oxygen-deprived. The sensation wore off over 25 min as I got home. When I reported to my oncology-nurse niece, she said she had never seen that side effect in any of her patients over 7 years.
    I Googled (sooo grateful for this resource!): Neulasta side effects.
    The first one on the ‘serious’ list said: sudden or severe pain in your left upper stomach spreading up to your shoulder.
    Since I earned my PhD in physiology and pharmacology, I studiously avoid taking drugs unless the benefits are likely to outweigh the risks. I e-mailed my experience to my dr with my niece’s comment. Dr replied: I see that side effect all the time. I asked: Why did you not warn me then? Why is there no mention of these drugs and their side effects in the center literature? She brushed aside my questions by saying: How about trying half a dose (3 instead of 6 mg)?
    She scheduled an appointment for 90 min before my third infusion scheduled for tomorrow (if my neutrophil count isn’t so low that I will again need Neupogen). I will agree to try a half dose of Neulasta next week, but reserve the right to refuse it if I get any chest pain, on the principle: Fool me once, shame on you; fool me twice, shame on me! If possible I would like to complete the remaining 6 cycles of my treatment with only Neupogen the day before an infusion.
    Googled the cost of these recombinant DNA products:
    One 6-mg Neulasta injection costs $3,000 – $7000, depending on the supplier. One 300-microgram Neupogen injection costs $285 – $300.
    So, one 6-mg injection of Neulasta costs about the same as 10.4 300 microgram injections of Neupogen.
    If one doesn’t have a high income or insurance coverage, how can one afford these drugs??? Fortunately I am covered by Medicare, that is being threatened by the Repubs as I type, and my income level qualifies me for my treating institution’s charity assistance.
    At my age and income level, I can’t see the point of prolonging my life by incurring discomfort and add a heavy expense to the already overloaded broken health-care system of this country, with no assurance that I actually will go into long-term remission at the end of my chemotherapy in late August. I echo the observation of many of you, that it seems our medical-care providers turn a deaf ear if we report anything that is not within their experience. We seem to be accused of an overactive imagination.
    I wish all of our dear sisters good luck finding the best therapeutic pathway through the often dark tunnel of this scourge. If you are interested, I highly recommend the excellent book of Siddhartha Mukherjee: The Emperor of All Maladies: A Biography of Cancer (Scribner, Nov 2010), recently awarded a Pulitzer prize, to gain some understanding of this scourge and how it is being addressed.
    Take good care, all of you.

  31. Bonnie Stephens

    I have just found this blog. I have felt the kinship mightily.
    I was diagnosed with BC March 30,2007. Two months to the day earlier, my husband filed for divorce in order to be with his “soul mate”. One month earlier, I purchased a toy Poodle puppy to take the place of my husband. Anyway, I had two surgeries, lumpectomy and then mastectomy. I began chemo on May 16. I endured 8 treatments, every other week with a Neulasta shot after each one. The chemo knocked me for a loop after #3…massive fatigue which caused me to sleep most of the time. This is the reason the downstairs carpet is pee-stained from the new puppy.
    I noticed I didn’t bounce back from treatment as quickly after #6. I was never nauseous but I did have joint pain and neuropathy and skin and nail changes. I tolerated #7 and did not feel well at all and my breathing was becoming somewhat labored. After #8, I could hardly walk and needed assistance from my daughter to undress for bed and getting to the bathroom. This was late August…by Labor Day, I was practically gasping for breath. My son-in-law took me to the cancer center where I was being treated and the oncologist admitted me. No one could figure out the problem. I had my oncologist, pulmonologist, cardiologist and even an infectious disease guy take a look. They were all stumped after many tests. I finally cried on Wednesday night after I was left alone. I was terrified there were no answers to my strange illness. We all knew I had breast cancer, but what the hell was going on? I was on antibiotics, potassium and finally steroids…prednisone!
    I started to improve in a few days. I could breathe much better and get into a chair.
    The diagnosis was “an acute allergic reaction to Neulasta”…it had damaged the lining of my lungs. OMG!! The old saying, “if the cancer doesn’t kill you, the treatment will” felt so true to me.
    That’s been almost four years ago. When I went to the oncologist for a follow-up exam, I was reading a magazine that happened to have an ad for Neulasta in it. I read the fine print where the side effects are. #2…difficulty breathing and shortness of breath…who knew?

    • Wow, Bonnie. Sounds like you had a particularly rough time with the treatment. I’m so sorry to hear it. Glad, however, to hear you’re now 4 years past. WHoo hoo! I am about to reach 5 years clear in late June. Thankfully Neulasta is far in the past! Hope you’re very well and to hear about your five years clear next year!

  32. Diane

    It’s nice to find this rant, and it’s always discouraging to see how many doctors are just mechanics following standard procedures without much understanding, curiousity or creativity.

    What has helped with my bone and muscle pain from Neulasta is hot baths or showers. It’s temporary relief, and it may aggravate my neuropathy….and of course you have to be strong enough to get in and out…or have someone help you. I have no idea whether this will help anyone else, MY doctor finds no reason for me not to do it, but your condition and treatment protocol may make it a bad idea. Since I didn’t see anyone else mention it, I thought I’d put it out there.

  33. At least she's doing well

    Just a bit of trivia: My wife just finished up her 6th and last (keeping our fingers crossed) chemo session for ovarian cancer. The treatment has been covered for the most part through insurance. We’re responsible for deductibles. Last cycle the bill for chemo was $14,000+-. I paid the deductible which was about $400.00. A week or so later I got a bill for about the same amount with a deductible of about $385.00. It appeared that we were being double-billed so I called the hospital to inquire. The billing dept. told me, “No, the charge was for the Neulasta alone.”

    So, to answer a previous writer’s question as to the cost of the drug, it’s $14,000.00/.06ml. For those of you who are interested that comes out to about
    $88,300,000.00/gallon.

  34. Marilyn

    Thank you all for sharing your experiences and tips. My 80 year old mother, was recently diagnosed with diffused large B-cell lymphoma; she suffered terribly after chemo#1 and had to be hospitalized the second week because her wbc nose dived and pretty much all her blood counts were wacked out. She got the Neulasta shot the day after chemo and shortly after started complaining about her gums and head hurting really bad. The pain continued to get worse and then she started getting nauseated and disoriented, and her temperature rose to over 100. At that point we rushed her to the emergency room.

    Before getting chemo#2, one of my sisters went on the internet and found a blog similar to this one (it may have been this one) that suggested trying Claritin D to help with the pain associated with Neulasta. We ran to the pharmacy to make sure she took one before getting the shot. It worked!!! She did not have the terrible, terrible bone pain that she had after the first one. However, her wbc and other counts still dived and she ended up in the hospital again – just before week two after the chemo. Her doctor says it is the result of the chemo (neutropenia) and she is getting the Neulasta shot every day while she is in the hospital. It does seem to be working, as her wbc and other blood counts bounced back very quickly.

    We pretty much expect the same thing to happen each chemo round, but are very grateful for learning about the Claritin D tip. I’m sure that hot baths and showers would provide some relief also, but if you haven’t tried Claritin, give it a try.

    Again, thanks so much for sharing – we learn so much from these blogs. In fact, no one from the medical team bothered to share that tip. However, when we mentioned that we heard that Claritin might help, they said they heard that, too. Then, when we told them that it actually did help – a lot – they thanked us for passing that on and said that they would let other patients know. Well, I hope they really do let others know – before the treatment, not after – but, it sure would have been nice to have been given that tip before my mother had the first shot and suffered so much.

    • My mother suffered so much, you would think they’d mention the CLaritin. She was on IV Morphine, that is how bad the pain was…she said was worse than any pain she’d had….including broken bone and a severed finger….now they are giving the Neulasta in 4-5 smaller doses….at least I think it’s Neulasta…maybe it’s another WBC med. Praying for your mom! Mine will be 69 in a week.

  35. My mother has non-hodgkins lymphoma and had her first round of chemo last week. 24 hours after the treatment, she had the shot of neulasta. THis was 3 days ago. Today she is in the hospital with severe head/neck swelling and bone pain (skull and jaws)…and shortness of breath. She is on morphine drip and there is still a dull ache in her head. Everyone thinks it’s the chemo, but after doing reasearch (including here) I will bet my life that is is a severe alergic reaction to neulasta. Praying we can convince her to continue treatments and LEAVE OUT the neulasta. There are natural ways to increase white cell counts we will try. Chemo is bad enough, but something that is supposed to “help” may have done more damage, AND made her NOT even want any treatment anymore. We are trying to change her mind on the treatments….seeing your mother screaming in pain and crying is horrible and not even vicodin took the edge off….well the morphone is making it bearable…but it still is hurting her.

    • Oh goodness, Cathy. This is awful, and perhaps the worst reaction I have heard of (if indeed it is the Neulasta). While I would certainly never deign to give “professional” advice, and I give a lot of credence to hunches with this sort of thing, I’d say the most important thing is to talk personally to her doctor. He/she might well have knowledge about this sort of reaction and what in fact it might be to. I know what I say is obvious, but I simply want to encourage you, in such a pressing situation, to find out what they know – or don’t know – first. Before you or your mom decide anything else. I think that is also the best chance for your mother to feel confident in a decision about the rest of her chemo. (Speaking as a former sick person, it’s possible that your encouragement to try something different, without solid evidence or professional opinion behind it, may just make her feel torn/pressured. You and you dr. want to work together if at all possible. Her “trust” in feeling safe and in good hands is already shaken through this. She needs to feel safe and comfortable, and that’s the best situation to accomplish that.)

      If it is the chemo, well, there are other types of chemo out there, and she could easily be prescribed one of those. (In fact, the general European-preferred chemo is a different kind to what is usually given in the US, just as one example.) If it is the Neulasta, there is also the “old” type of white blood cell booster. I’m afraid I can’t remember the name, but it is not preferred because it involved a number of days of shots in the tummy. However, if Neulasta is your mother’s problem, she could be prescribed the other kind also. I would never knock one’s desire to seek natural treatments, though I will say for myself, I did not find anything that worked. But by all means, try if you like. Just make sure you clear anything with her doctor (many supplements may interfere/interact with the chemo or other drugs your mother is on.)

      My first chemo was also horrid, as you read here. But it got better from there! Please tell your mother she is more than welcome to email me if she’d like to ask me questions or just chat. My “door” is always open. (Just let me know here and I’ll pass on my private email to you…) All the best Cathy. I’ll keep your mom in my thoughts.

      • THis round of chemo is going quite well (same course as before, sans Neulasta). She is getting a 5 day course of another med for WBC…we’ll see what happens. THese reactions are rare…regarding Neulasta, but she had it lol

        She is trying some natural things too, just eating WAY better, fresh fruits/veg and trying Tusli tea…also more protein…mom ate one meal a day before and drank only coffee…so any dietary changes have all been good 😉 Thank you for your Good thoughts! I will let u know how she does a week after this round…the symptoms hit her 2 days after the last round….

  36. irma

    I have my last treatment 2weeks I am thinking of not having nuelasta my last treatment having surgery 1mth later does anyone know if their sod ne an issue with this It’s horrible I keep thinking not sure if its chemotherapy making me feel this way or.nuelasta. I have worked.in medical field for many years medical billing maybe this is just to raise the revenue per chemo treatment I don’t know but very weird.how of makes us feel worse then better.

  37. sharon

    I have had neulasta for the second time to boosts my wbc… I am so sick with it I think I might die, It is much harder than the chemo. Im in so much pain I can’t do anything but lay in bed . Is there anything out there that can help with all this pain?

    • Sharon, I’m so sorry that you are struggling with the Neulasta curse. Check my comments. There are a few helpful suggestions from other readers. If none of that works, you just have to keep taking it to your doctor. (Frustrating, as I know first hand they can be less than assertive on the Neulasta front…but it’s up to him/her to help you manage your symptoms. So if you’re that miserable you have to keep pushing to see if there are alternatives available for you.)

      • sharon

        Ive just had my last round of chemo round 6 for NHL. Had the Neulasta shot on Tuesday, this is now Saturday, Im in so much pain I can hardly stand it. However Im now in remission, and pray I stay, If it comes back I will not have any more treatements. I have told my Dr. every time about the pain It seems as if he does not hear me . The pain this time has been by far the worst. I live alone and have no help what so ever. I can hardly fix any thing to eat all I do is take pain meds. drink water and lay in bed. AS bad as it sounds death might be easier..

  38. My mom had terrible probs with neulasta, they decided to give it a little a day for 7 days. It seems to help…but she still gets terrible headaches and jaw pain from it…Claritin-D does help with the pain. She has had 4 rounds of chemo so far…all with Neulasta. First round her count was below 1000, hospitalized with excruciating pain, bone swelling, from the Neulasta. ROunds 2 & 3 her WBC never went below a 5000 count…neulasta given over 7 days. This last round, excruciating pain (Vicodin didn’t even take the edge off), WBC went below 1000 (and she did have the Neulasta!)…she is seriously thinking of not having rounds 5&6.

  39. donna

    Thank you for all the great I had ca stage 3 of the breast, I started chemo on July 26 2011. I received the neulasta the day after and I just finished my third treatment. I told my doc that the Neulasta was making me sicker than the chemo. I have bone pain and a rapid pulse for at least a week after the shot! I become so weak I cannot get out of bed! Has anyone else had the rapid pulse? I read in the litiature it is one of the side affects but my doc just said stay away from coffee and tea! Thanks for any input

    • I can’t remember for sure, but I think I had that too. I wasn’t sure if it was from the Neulasta or the chemo though. I’m sorry you’ve also been feeling so rotten. Congrats on finishing your 3rd treatment…only a few more to go!

    • Tammy

      My sister is having fast heart and light headedness. just had 2nd dose of chemo and shot. Has to stay home in bed. Miserable!

  40. james williams

    I had a shot of possible neulasta yesterday and now it feels like I have growing pains in every bone in my body 😦

    I am in a clinical trial testing neulasta vs a new version, I hope to god that this is neulasta and that the second version is painless!

    Nurse went to get me some diclofenac an hour ago…

    • Hi james. Well at least you know whatever you got is working. Ok, silver-cloud lining moment over, I’m sorry you’re i discomfort, but I hope the diclofenic helps. Doclofenic was not out yet when I was in treatment, so let us know if it knocks down the pain.

      • jamie

        On its own it didn’t help at all, nor did paracetamol (acetiminophen in US) but together they worked perfectly. Hopefully the trial I’m doing will come up with a less painful version of neulasta, I’m going back in November and am having a shot of the one I didn’t have this time, I really think it was neulasta this time as all but 2 people out of 14 were in pain yet the ward next to us on the other drug had far less symptoms. Who knew your lower back could hurt so much without even moving!!

  41. Vickie

    I have just finished round 4 of chemo and Neulasta for stage 1 breast cancer. I was told in the very beginning to take Advil and Claritin at the first sign of any pain… It has been amazing how it works. I did not take it this week, and today… major pain; Immediately headed to the medicine cabinet and now I am almost normal.

  42. Mom just completed her 6th round (and final one. She has decided no matter if the NHL comes back or not, she will not go through this again). THey tried for the last 2 rounds to give 7 shots of Neulasta (1 per day) in her abdomen and spread the steroids (they think this is why her face and head swell to enormus proportions…) out over 10 days instead of large doses for 5 days. So basically it changed one type of pain discomfort to different problems…not so much swelling, but abdominal pain and a lot of discomfort for a longer period of time (she said the intenseness wasn’t as bad as the first 4 treatments, but the intense pain (10+ on the pain scale) lasted only 3-4 days, where these last 2 rounds with the modifications leaves her at a 7-8 pain scale for 8-10 days.
    She tried Claritin, Advil, Vicodin…the vicodin took the edge off, but pain level was still over a 5…which she could cope with.

    I know every body is different and reacts to things differently, My mom once had her hands crushed in an accident and she said that was easier than this…I have learned a lot from her experience. I can’t imagine what mena nd women with youg families go through and try to cope with this…my hearts go out to all of you…and I pray this hell brings a cure.

  43. sapphoskitchen

    Thanks to all for talking about nuelasta. I was diagnosed two months ago with lieomyosarcoma, a tumor in my left breast. Not breast cancer, but cancer in my breast.

    I had a double mastectomy and completed my first round of chemo in hospital Friday 11/4. I read about nuelasta and hoped for the best.
    Saturday`s shot has resulted in excruciating knee pain. I cried and attempted to find a comfortable position, the only relief found by using leftover vicodin from a prior surgery. I need to try claritin, though.

    The chemo in hospital doxirubicin and ifosfomide were nothing pain wise compared to the shot.

    I appreciate knowing i am not [too] crazy.

  44. angela

    Was diagnosed with stage 2 breast cancer in Late Sept., (lumpectomy) just had my 3rd chemo session on the 23rd of Nov and felt great on thanksgiving and the Fri. after, then came neulasta. First round didn’t bother me much second shot got worse, now just getting over third shot that was given on the 25. Chemo is a cake walk next to neulasta, dont get nauseas, just very achey, sweats, chills, headaches, dizzy, confused, sleep 12 hours a day, sore throat, depression,for about 5 days! Maybe they are giving me too much, but at 5K per shot, maybe I’m getting my moneys worth. Even with neulasta first time, wbc should have been at 4k and not 800, not to mention a blood transfusion. Guess I will just have to go through this for several more times, hell what do I know, they are the experts!

    • My mother had excruciating pain with the Neulasta…the first 3 rounds of chemo and she almost gave up. NOTHING helped with the pain, not Clairitin, not Vicodin, not Advil…believe me, we tried everything many here have mentioned and nothing gave her relief. She had tremendous pain in her jaws and head. So on the 4th treatment, they decided to try the Neulasta spread out over a 5 day period…a pain to go to the Dr’s office for 5 extra trips (or hospital if it was on a weekend) but it was a bit easier. Her count rebounded just as quickly and, while the pain was there, Vicodin managed it. Mom has lymphoma and after all this, 6 rounds of chemo…the scan showed a remarkable improvement…it’s not gone, but we hope it’s in remission…although we haven’t been told that.

  45. Andra

    Hi,
    I undergo on A&C chemo for breast cancer. After first session and six days after Neulasta, my ANC was 0.4%!. I was terrified, because I’m working in hospital. Before the second A&C session, the ANC came back to 3.3% so I was able to get a new round. Today I found out that my ANC is 0.2%!!!! I’m glad that I called in sick. I asked the oncology RN what’s going on, because I eat better, sleep better, even I work better after my first cycle. She is not able to articulate an answer; she is selling me the same stuff with good hygiene, avoiding sick people and “is happening to all people “. Really, she is stupid. I did not have any health issues (cholesterol, diabetes, etc); no overweight. I dropped off the meat (except wild salmon fish and sardines) and I’m staying away from sugar refined sweets (very depressing…). Anyway, I’m trying to find a way to boost my immunity (no herbal stuff, because of possible interaction with chemo). Somebody suggested spinach; this week I cooked spinach with mushrooms. But still something is wrong with Neulasta kicking in. Regarding the bone pain, Claritine or the generic Loratidine helps (morning breakfast). Also Motrin (Ibuprofen) is good at 600 mg dose, but do not go over 1,800 mg per day. I’m taking as needed Norco 5 or 10 and Tramadol (Ultram); I have axillary node dissection at one armpit and on the other shoulder I have inserted a porta cath for chemo, so there is still a lot of pain. Worries are no good, but Monday I have to go back to work until Thursday (my chemo day). It is a lot of pressure, knowing that my immunity is down.

    • Andra, I’m sorry you’re having so many of these difficulties. I must say, please talk to your doctor about working while on chemo. I cannot imagine that working in a hospital, with sick people, is something s/he would advise you to do. I did not even accept any visitors to me house when my neutrophils were knocked out, and your situation is concerning to me. I will privately email you further when I get a moment, but I wanted to ask you to think about this asap.

  46. I thought I’d read some horrible things about Neulasta last year when I first was diagnosed with Stage 3 Endometrial Adenocarcinoma and Appendiceal Carcinoma. Your blog confirms it:( I’m a 64 year old female who had a complete hysterectomy, appendectomy and omentectomy during May, 2011, then sailed through 6 chemo treatments (without Neulasta) that ended on November 30.

    Unfortunately, a PET scan revealed continued growth in my peri-inguinal nodes as well as new tissue growth in my abdomen, and I started on a new chemo regimen with Gemzar last week. Absolutely no side effects! Today was my 2nd chemo and my oncologist informed me that my WBC and neutrofills were just barely within his acceptable range. I may not have chemo next week but I almost surely will have to start on Neulasta. At least my Doc and the oncology nurses at the infusion suite were honest about the Neulasta side effects. My Doc generally is fairly conservative with pain meds, but he has kept me supplied with sufficient Perkocet to alleviate the ongoing bone pain I’ve experienced since last year.

    I do try to stay positive and to see the humorous side of all this. If anyone wants a couple giggles when you’re able to ignore the pain and read, check out my blog at cwc6161.wordpress.com (look for “Air Cancer” in Categories).

    Positive healing thoughts and prayers are winging their way to each of you!

    Candice

  47. Pingback: Claritin and Neulasta « We interrupt Walbridge's regularly scheduled program…

  48. Andra

    Hi,
    Before the third A&C session, I had kind of runny nose. Anyway, I’ve got the chemo, and as precautions I start taking Levofloxacin (Levaquin). The things were getting out of control (cough but only white secretions, a lot of spitting, only 3-4 hours night sleep, but no fever). I become dehydrated, very anxious, and of course the mouth and lips sores( very painful!) show-up. I was admitted in hospital (work place), and I went through a lot of tests. The worst was when my heart rate have raced to 120 beats/min suddenly, so they have to rule out any embolism. So at 1:30 a.m. I have to do CT scan with contrast substance which came negative, next day echocardiography and Venous Doppler (for searching the blood clots). No clots, but all cancer patients should be aware about the risk of blood clots no matter of age. That’s way is important to move (of course cautious, slow), not lying 24/24 in bed, even when you don’t feel good. Pulmonary embolism can be small or life threatening, but you get heparin like products and is not fun at all. About my white blood cells, of course they went down to 0.5 with ANC=0.1!!!. I was discharged with 1.1 and today Feb.06 is 4.6 with 3.7!!! So, Neulasta is working but it takes awful a lot of time, and being without immunity at least 7days is a nightmare! I have some good chances for the last round of A&C this Thursday. My heart rate is still around 100beats/min, and is due to anemia. I start to eat meat (very little chicken, veal). It is very difficult to chew, so everything should be chopped. About the mouth sores, I use a stomatitis cocktail (it’s a prescription using a mixture of Benadryl (diphenhydramine), Maalox (aluminium magnesium ) and Xylocaine (lidocaine)2%) but very cautious because of Lidocaine. But the best thing is camomile tea (no prescription required…). Swish and spit. You can drink too, but it needs a little honey to improve the taste. I have other challenges too, but I have to take them step by step. It is important to be patient and diligent in your care. When you see the “red flag” do not procrastinate. You do not fight with cancer only, you fight with the complications that may arise from having the therapy.

  49. Andra

    I’m kind of upset. After the “crash episode”, my hemoglobin did not recover enough for a new A&C chemo session. The dr. wanted blood transfusion and chemo, but I’ve rejected the suggestion. Blood transfusion for what? Because I was only 1 point below their safety margin? And the risks of blood transfusion are high (not only the infectious). Crazy!!!! We postpone for one week. I think the bone marrow with proper food and rest will recover for the red blood cells. I cried because A&C is a nightmare. And my crash it was because of their lack of monitoring my situation (when I called and I said that something was wrong with me, I received only the same answer that I’m o.k. as long I do not have fever). So, when I said that I have less confidence in them, a social worker dared to tell me that “if i do not trust them, find another place”. And she repeated this in front of my husband!!!!
    And this is happening in a cancer center!!! Anyway, after this last A&C cycle, I’ll go for the next chemo sessions in a another location (belongs to the same association of hospitals). I should complain about this social worker, but I have to focus on my problems, instead of that.
    I have to stay positive. I pray, eat, drink fluids, sleep and I go to work when I feel o.k. People around me support a lot. I’m blessed.

    • Goodness, Andra. You are having an awful time! And the hospital’s response makes me very angry, especially the social worker. That’s really inexcusable. I commend you for concentrating on your big problems, but I would certainly say something about this social worker when you get a chance. You have a problem because they have been lax in their duties to you – she should be welcoming your input and not discouraging you – ESPECIALLY the social worker.

      I’m very happy that you are well supported by loved ones and are so well-adjusted. That’s the best help there is. I hope that you’re able to get on with your next round of chemo ASAP. And thank you for keeping us up to date. We’re keeping (all of) you in mind!

  50. Andra

    Yesterday was my last A&C cycle. The labs were fine(my hemoglobin 9.1), but the dr. was cautious to give 100% full dose so she gave me 90% instead (mouth sore concern??). It’s o.k., because it’s the last one. Today it’s my Neulasta Day, and also I’m scheduled for some i.v. fluids to prevent a future dehydration (couldn’t they do that when I was having that nasty virus?). Anyway, I’m stuck with the same center, because the location which I wanted for the next rounds was not likable to my dr. But I hope the next 12 weeks of Taxol will go better. Now, the following weeks are very important, because my counts will go down pretty fast and maybe next Saturday will rebound. And still for Taxol I need good counts.
    The best wishes for everybody.

    • Andra – whoo hoo! Your last A&C! One major challenge behind you. Congrats!

      • Andra

        Thank you. A&C is history. But I have 12 weeks of Taxol, every week (my porth cath is going to look like a swifter).Taxol is a “little better”; does not decrease so much the immunity ( my hemoglobin is not so great). But already after the first session, I have muscle pain, joint pain (by the book). OTC stuff is useless; Ultram (Tramadol) not really great; I have to use some Norco (not my favorite) or to ignore as much I can. Neulasta pain was not very bad at certain point (only bone pain). And soon the numbness and tingling in feet and hands will come-up. Plus fatigue….
        See, I have major challenges to overcome.

      • Trust me, all of us here know that to be true. We’ve all been there. But every landmark passed, is a landmark passed. Getting to the Taxol is still another step on the way to being done. That’s all I meant.

        It’s like driving from DC to California and cheering because you’ve reached Kansas. You’re still excited cause that’s 1/2 the country you don’t have to drive through again, and now you’re closer to CA. Right? Well, that’s how I reached “California” anyhow.

  51. Andra

    Great, my last Neulasta shot was terrible.The RN did it very slowly and painful (the previous 3 shots were fast and the side effects were manageable). So, after around 36 hours the “party” begins: agonizing bone pain and weakness. All my resources are exhausted. After a night with only 2-3 hours of sleep, I went to the center. Hydration and dexamethasone (decadron) i.v. gave me a little relief. I feel much better, but the “party” is not done. The pain is still on, but I hope I can overcome this challenge and work some hours this week. I have other things going on (too much emotional distress to be disclosed now), and keep working is the best thing in my case. Of course, my favorite WBC (white blood cell) count will be down. Again, super -hygiene and my “defense weapon”: “THE MASK”.

  52. Kathleen McCullough

    I am going to receive my first Neulasta shot tomorrow, are there no “good” comments about this drug, or are there no patients who did not experience suchl, Aleve, and Advil.

    • Hi Kathleen, I understand your concern. I should think there are plenty of good experiences with this drug. But the bad experiences were not being taken seriously by our doctors. They think “it works every time, for everyone…that’s why it costs so much.” Doctors are so in love with it (or, were when I took it) and often don’t seem to be aware that there IS a percentage of people for whom it doesn’t work (or, at least, don’t feel like it’s worth it). And that’s what this blog post is about, and why it has gotten so much attention. There just aren’t that many people out there saying this. But it’s not meant to scare you. We are, I hope, just a minority who was not being heard.

    • Andra

      My first 3 shots of Neulasta were kind of o.k. (little bone pain, sometimes in the rib cage, sternum), but the last one was the worst. Anyway, it will be better to have one shot, instead of daily Neupogen (“belly shot”). And of course they have to draw blood daily for the counts (white blood cell counts and absolute neutrophil count are important to follow-up) . My hospital policy allows Neulasta only for outpatients, for inpatients Neupogen is given.
      Neulasta does not act fast, but still kicks in. Only do not freak-out if the WBC is low. Mine was 500 (normal is 4,000 at least). Just stay mentally strong positive and keep away “the bugs” as much is possible.

    • Krista

      I have completed 3 rounds neulasta with minimum side effects. Small pain mostly in head/ neck region. Well worth the trade -off of good blood counts. (R-Ice chemo for 2nd dx NHL)

  53. Kathleen McCullough

    Went through my first session of chemo (of 4 sessions) and first shot of Neulasta last week. So far, so good. Prepared myself by taking Claridin D and ibutropen before the receiving the shot. I had some pain in my the rib cage a couple of days later but again took Claridin D and ibutropin and the pain went away almost immediately. Next seesiion of chemo starts on 3/19..

  54. I found the worst part of my breast cancer journey was the neulasta shot. The excrutiating bone pain crippled me. My lovely doctor tried so many pain meds, then she finally put me on Endep, an antidepressent which also treats pain as well. It worked for me.

    • Andra

      I’m afraid that Neulasta is a little kid after I’ve start my Taxol. Joint pain (knees, ankles and wrists) and muscle pain (back) are the worst combination. Tylenol is not so effective, Ibuprofen is zero. I try to avoid Norco (constipation) even it helps more. Last night I used Aspercreme all over my pain areas. The relief is temporary and today I wonder how I’m going to work. Anyway, pain is pain, but I’m more concerned about the counts. After first session of Taxol, the WBC dropped to 3.6 from 6.2 and ANC from 4.2 to 2.4. I do not know the consequences of session two; the count is done only before the chemo, so I could expect a surprise (hold the chemo…). And I know which word will come out from the woods…. Is anybody willing to guess?

  55. Andra.. Is Taxol the same as Taxotare.?? I had Taxotare. When I had my neulasta it did not help at all regarding keeping infection at bay. My infection was massive in my surgery site I expelled clots. I had a canular with twice daily infusions, it did not help. It did not heal for three weeks and then I had to have radiation. on a raw wound. OUCH. And then the radiation was so intense, I had blisters on my back. Regarding work, I went regardless. I was lucky I had a dear and sincere friend. She helped me.. Regards my employer, they would have made Head Lines in the Newspaper. And I am sorry I did not carry it out. Good luck♥

  56. Sorry.Let me explain..Regarding my employer, I had 7 hours sick during 5 months of chemo. Mind you I could have had more. Then I had the necessary time off for surgery and radiation. They wanted to sack me because I was unreliable….excuse me….I was fighting for my life…I sought my rights about them wanting to terminate me and then the next fight began. I was victimised because of my health and my age. At the time I was 57 years old and had been at the same place for five years.This went on for about 2 years. I was too sick to fight so I left. This does a lot for your self esteem when you are at your lowest. I hope my previous employer chokes… sorry.

    • Oh Maggy that’s awful! And I thought my employers were bad about sick time. (I actually think it helped that I was unable to do my job at all during treatment, so I was just out for one long period and they left me alone. But I agree with you – someone should sue employers like yours. I hope they choke, too. Humph! Completely shameful.

  57. Killer Boob, were you saying you did not work during your treatment??
    Please explain.

    • Hi Maggy. I did not work at all. While I agree with Andra that I think Disability status is awarded to most with cancer treatment, as a Flight Attendant in particular, my job is very physical and demanding, so working after such surgeries and chemo would not be possible for me. (Surgeries aside, I can’t just go home if I am not feeling well, after all.) Technically, my airline has “ground positions” that I can be offered if I need to work but can’t fly. However, these positions are always filled by “people who know people” (and just prefer not to fly), so I those positions are always “full”. I was also denied SS disability, which I clearly should have gotten, but to be honest I just didn’t have the stamina to fight it at the time – and later when I enlisted the help of a SSD lawyer, they basically just let my case die from their disinterest. (I assume, because at that point I was going back to work, and while the money was still owed to me – I had cleaned out my savings to the last penny meanwhile – the law firm could see that their take was finite. I guess it wasn’t enough to motivate them to do the job. Sigh.)

  58. Andra

    Hi Maggy,

    Taxol (Paclitaxel) and Taxotere (Docetaxel) belong to the same class – taxanes and are extracted from different types of yew. Structurally and pharmacologically are pretty similar. The side effects are most similar; it’s oncologist decision based on his/her experience to use them.
    Today was my third session of Taxol (weekly regimen). Some surprises were expected (the WBC dropped to 2.7 from 3.6 and ANC from 2.4 to 1.7). So it’s a kind of edge because ANC should be around 1.4-1.7 for safety. Will see next week how the “party” will go. The biggest surprise was the increase of liver enzymes (still under 100), but it’s a jump. Taxol it’s the main culprit, and because of him I have to hold Tylenol (for pain), L-Acetyl Carnitine (to prevent tingling and numbness in hands and feet) and type of Ensure supplement (protein mainly) for one week! Lord have mercy on me next week, because I’m left with only Ibuprofen and some Ativan.
    So, probably I’ll skip at least one day of work.

  59. Andra

    Having cancer, brings the statute of disability. As a person with disability, the employer has to make efforts to let you to work, accommodate you, anyway they can’t fire you (a good employment lawyer is waiting around the corner!!!!). I’ve got a little fight with my boss regarding the coming back to work after I was in Medical Leave of Absence (my surgery was extensive and I’m left with some problems). She did not know about this stuff, even HR was reluctant at first. But something changed (probably they looked into the corporation policy) and I was able to return to work. Now I’m in status of Intermediate Medical Leave of Absence. I can call in sick (no absence considered) when I have a medical problem, I feel that I can’t work. And because I do not have sick hours to be paid, the hours will be paid from short term disability benefits only 60%. I keep the schedule as best I can and my coworkers are helping me as much they can. We are short staffed, some of us quit, freezing hire is “on”, so I feel the appreciation when I come. I’m trying to do my best and keep working is good. Plus the socialization is a great support.

  60. Shay (Ann Pardee)

    So glad I found your website or blog or whatever this is. Sorry, I’m not very techno-savvy. In my 8th year of fighting metastatic breast cancer, on weekly Navelbine chemo & just now facing first experience of a white blood cell count of 1.0, so couldn’t receive chemo last week. Was told we’d be talking about Neulasta next week. As I am already living with rapid pulse rate(now on Metoprolol to bring it down to mid-80’s range) breathlessness, a fatigue that nearly immobilizes me at times, leg muscle discomfort that wakes me up several times during the night & the other pain & things you’ve all described here coming from the Neulasta, I don’t think I could bear to have an increase of negative experience on any level. I’ve already been praying the Lord would just take me sometimes. Not willing to take the chance I’d be one of the ones who have no problem with this additional drug going into my body. It has been such a lift to my spirits today to meet with all of you who know & understand what my body has been feeling, too. I can see how a person who has not felt these symptoms would not be able to understand. I am often amazed, myself, how my body can be feeling all of this when it felt pretty “normal” before starting this new chemo drug. I may not know what the future holds, but praise God, I have complete trust in the One who holds my future. God’s best be with all of you, Shay

    • Hi Shay, I’m so glad that we could be of some support when there are already so many scary things you are going through daily. You sound like one tough lady! Let us know if you have any questions.

  61. Andra

    God have mercy on you Shay! The pain (bone, chest) is very disturbing. And when all resources (meds) are exhausted, really we are on Lord’s Mercy. I’m in pain too, because of my Taxol (no Tylenol!) so I do as much I can to ignore (my hand joints hurt when I’m typing, but still I resume it). Anyway, my lovely counts are due tommorow. Do not worry about 1.0 yet, your blood marrow will have the resource to recovery (with a little help from our common friend Neulasta). Look on the positive side: if the WBC are so affected, it means your cancer cells are really in “big trouble”.
    Blessings.

  62. Andra

    The counts came unexpected: ANC to 2.3! and hemoglobin a whooping 9.7! The liver tests are better, proteins are o.k.; some labs are still mess, but the most important is that I’ll hit the 4th session tomorrow! The Carnitine may be involved, but anyway I resume with low dose. It’s enough the pain; I don’t desire numbness and tinglings in my hands and feet (even there is a little, but as usually I ignore it). No Tyelnol, but at least I can have some organic protein shake called Orgain (one per day). I can take Iburprofen but is it recommended with Nexium or Protonix (stomach ulcer risk). I eat, and Protonix just got a FDA warning about usage for long period and the risk of a diarrhea with a “bad guy” called Clostridium difficile. So, I’ll try to stay away from these “proton pump inhibitors”.
    Outside is sunny; I’m missing my gardening, but inside still I did a little work (super extra caution!). Blessings.

  63. sally vowles

    hi killer boob – chanced on your rant whilst trying to find painkillers for neulasta bone pains. i live in france, i’m 71 and have breast cancer. i’ve had 3 chemo sessions with a neulasta jab the next day after each one. reaction 4 days after first jab was awfull pain in my right shoulder and lower back. i took the paracetamol/codeine tablets prescribed by my doc and was later felled by an horrendous allergic reaction to codeine. no pain at all after second neulasta jab but this last time, terrible pains in my legs that plain 500mg tablets of paracetamol didn’t touch. so…. hence the search. i don’t know if claritin d is available here, maybe under another name but will have to get something lined up for session 4! i will be starting on taxotere (docetaxel) and have been warned to get special nail varnish for hands and feet to be used before and for 2 days after the chemo. i’ve also been told that fatigue will be a major side effect, anything else i should know?!! well killer boob, you said you aimed for california, i’m aiming for the sea at the south of france in the window before i start radiotherapy! my heartfelt thanks to you and everyone who has let me share with them. bisous à toutes xxx

    • Hi Sally. All the best to you. It seems you’ve been relatively well-informed about what to expect and ow to, perhaps, head it off. My only other thing was that neulasta often gave me what felt like a bruise over every inch of my body, for about 24 hours. Even moving my eyebrows would hurt. But it went away. it was just weird. Don’t know how to prevent it, but at least knowing it could happen, perhaps it won’t freak you out so much IF it happens to you. (I haven’t heard many others complain of this symptom.) let us know how it goes!

    • Andra

      Taxol?
      Welcome to his side effects! Joint pain,muscle pain, numbness and tinglings in feet and hands, and a terrible fatigue. The classic nausea, vomiting, diarrhea can add.
      The appetite is bad, I’m forcing to feed myself. The protein supplements are helpful (Ensure type, but with lower glucose). Still I’m going to work, but 3 days a week, in evenings. I need free mornings for appointments.
      My left arm is painful, so everything I’m doing is slowly (crazy….). At least I’m trying to do something, but is going to take a lot of time.
      Five more to go….

    • Hi Sally, I live in Australia, I am 62 years of age.I had taxotare for five months pre surgery to shrink my massive tumor 14.5 cm. Regarding the nails, The hospital I was attending gave me gloves and strenghening nail varnish, but sadly my finger and toe nails fell out. I thought my finger nails would be OK. But no.. Even my Oncologist thought so, but bang one day here the next day gone. For the bone pain with neulasta, codeine did not help me at all. My pain was dreadful in my legs, I could not walk to my letterbox, and shortness of breath was just as bad. My doctor gave me morphine – no good. I have never heard of Claritin D, In Australia it sounds like an Asthma drug?? My Doctor gave me an antidepressent drug and pain killer at the same time. It worked. I go for my five year clearance next week. Wish me well please, because I do not feel very confident. You know what I love about this site. I can relate to people with the same problems as me, and I am not judged. Well I hope not… Does any one have a very uncaring husband..That is a subject I would like to tackle. My husband at his worst was not with me for my diagnosis??? It was my brother.. When I went in for surgery to have my breasts cut off, I had my teds on and I said to him, I am off now.. not a hug, kiss or anything. I think that was the most hurtful thing he has done to me in our 40 year marriage. And when I had my Cancer, it was not about me, but how he was coping?? When I go for my check ups I go alone?? It is a 200km trip which takes all day. Yes I get very depressed, Oh to have a loving husband.???

      • sally vowles

        hi maggy – i wish you well on your 5 year check up, you’ve got this far, so fingers crossed. ok so i’m now going to wait for my nails to fall out, they really hurt. my onocologist here in france hasn’t heard of claritin d for neulasta pain either so i’m going to download what i can find for him. my husband just doesn’t know what to do for the best for me and he’s really frightened. we faced up to it and talked it out. perhaps your husband just can’t deal with it and thinks if he ignores it, it’ll go away…. but everyone needs a hug, anytime. where are you in australia? i hope to get out to visit my daughter in sydney later this year after finishing chemo and radiotherapy. then we’ll get another summer! big hug and love sally.

      • Maggy – I am so sorry to hear that you feel so unsupported. Unfortunately, what you are feeling is, I think, all too common. (The divorce rates after serious illness are shamefully high. Please don’t read that I’m suggesting anything into that. I’m simply stating that you certainly are not alone in what you are feeling.) I very much hope that you and your husband find a way to communicate about what both of you are feeling. I can’t imagine the hurt you must feel doing these things alone. And I’m so glad that you can come here – you most certainly will not be judged. But I do think there is an even better place, with a larger community to support you – please check out breastcancer.org’s discussion boards (or a website based in Australia). These boards helped me so much when I will in treatment. SO much. I feel certain that you’ll find lots of lovely ladies there to talk to, and many who are experiencing similar things. And, of course, please come back and let us know how you’re doing!

      • Andra

        It’s sad when your husband for such long time is so “cold”. Usually men are very stressed about diseases. Sometimes it’s more painful for them, than for the sick wife, because they are scared. They are too proud to recognize that they are helpless, they do not know what to do, or they are blaming themselves. It’s difficult to understand their reaction.
        I’m blessed that my husband is very patience and caring, even he is sensitive to blood and related matter to medical field. It’s not easy to communicate and to convey the right message, but we are learning (“chemo brain” is very stressful). We are blessed that my parents in law are living here and are helping us with bills (the insurance is covering a good portion, but still we have co payments, deductibles and many other medical expenses uncovered).
        We have a very supportive church. The church is around 500 members (w/o counting the children). We do not know too many people. Friends or less well known people are helping us with rides for me and cooked food, so my husband can work (self-employed).
        I do not have any relatives here. My father died not very long time ago without knowing about my situation. My brother knows about me, but he is living across the Ocean, and he has family and his job. He is very confident in an good outcome even it’s not early stage.
        Your faith is important and do not lose it. Stay strong and positive.
        I’ll pray for you and I’m sure that you are a cancer survivor.

      • sally vowles

        hi maggie – how are you doing? was your 5 year check up good, i do hope so – to go 5 years clear, i’m certain that it was. i’m thinking of you love sally xx

  64. Andra

    Tommorow is scheduled my 6th Taxol (6 more left!). The labs are up and down, but still good. The hemoglobin and proteins went up. The ANC is on borderline but hanging on. The worst things are the numbness on hands and feet and of course my “favorite joint and muscle pain”. I start something called Neurontin (Gabapentin), but after three doses of 300 mg, I landed on in ER because of the “pounding heart”. The numbness was better, but in fact I was having anxiety (great candidate for Ativan a.k.a Lorazepam). So, I have to start on lower dose (hope fewer side effects). No Tylenol (unhappy), even the liver tests are o.k.
    Anyway, the Easter is so close and my plants are in distress. I did a little rescue work, but I’m getting more tired. I have to find some energy, so I can finish the potting problems. Outside is sunny, but around 40-50F.
    I need more rest, more sleep, less worries and something “good” (sugary, just a little bit). Ice cream or cake?
    Bless your heart.

  65. Andra

    The 7th week of Taxol went through. The labss are holding around.
    Unpleasant surprise: signs of lymphedema (swelling )of the forearm. This is the explanation for the persisted pain in my arm. Trigger? Multiple ideas: gain weight (around 3 pounds in 1 month), some minor cuts (well healed), more stretching than usually (?), skin too dry (?), dehydration (?), uncontrolled pain (?)…. Let’s say STRESS and is enough.
    Now I’ve got to wear a compression sleeve and go to appointments with physical therapist certified in this area (they are quite few). A new “party”…
    By the way, I’ve enjoyed a couple of little bunny candies this Easter. But it’s done for this year. No more….
    I’m back to honey and agave syrup., lemon and water, cocoa powder.
    I have to cut the portion of my beloved whole plain yougurt. Mozarella cheese is already low skim milk; the butter is already “out”. What else is left? Cottage cheese (yucky) , sour cream (cut the tsp.) and cream cheese (from now, only a slice of bread every other day…). I have to walk more, but the weather is terrilble cold. Sunny, but very cold.
    I’m a little sad.

  66. mike

    i was given neulasta with my first chemo i thought i was going to die from it. i refused it the second treatment and they got all upset and made me have blood drawn twice to check for what they said would for sure happen to their educated suprize they were wrong all my levels were in the normal range. they told me i was the exception and that my levels may be in the normal range but they were in the low-normal range. i still have six more treatments to go so i will try to update this for anyone who is interested. please don’t use this as a reason not to take a neulasta shot this is only my path not yours. i would be saddened if this ( my story ) hurt anyone. i am/ have been always very strong and healthy which may account for my individual results, and i am only 56 yrs. of age. thank you killerboob for giving me a fourm to rant. furthermore good luck to all of you.

    • Andra

      Hello Mike,

      Do not despair. Your chemo is very aggressive on bone marrow, and the white blood cells are mostly affected. In U.S.A there is another substance to increase them called NEUPOGEN which is given daily, after the blood draw. It may be better tolerated even is given daily, but it kicks faster.
      Depression is common, especially for healthy conscious persons. But I learn that cancer can strike anybody, vegetarian, vegan etc.
      Please, keep in your mind that you do not want that your treatments to be delayed because of low counts. The cancer cells are not waiting, they are growing.
      If you are looking for other ways to stimulate your immune system, please do not use herbal supplements and spices ; they can have a negative impact on your chemo. Turmeric (very popular Indian’s ingredient in curry inhibits the action of Cyclophosphamide (Cytoxan)). Shocking….
      Good luck and keep us posted!

      • A big hand for the wise herbal supplements warning/reminder. (Always always tell your ocologist about EVERYTHING you are/want to take. Even vitamins!) Thank you for the quick and up to date info, Andra. It is helpful to lots here.

      • sally vowles

        thanks andra – i’m seeing my oncologist tomorrow pre 5th chemo session and will certainly pass on your information. nails have been hurting right from last session and the skin around several nails is peeling and rough but…..i’ve still got them!! tks again sally xx

      • mike

        i’m going for my fourth chemo this monday and my blood levels are still in the normal range yea! so i am still not taking neulasta or any other drug to increase the levels. the chemo is enough for me thankyou ! i will be at the halfway point at four treatments so wish me luck and i will keep up dating if you like. mike 🙂

      • mike

        i’m in the middle of my fifth of eight treatments and my blood levels are still good, so no nuelasta for me! i don’t know if the first (only) shot i took gave me the white cell count i needed for the entire treatment but so far so good. from talking to other patients i have found that i was the exception as far as the pain and agony neulasta caused. so i would like to let everyone know that the drug neulasta does not have to hurt and make you really sick, it may have just been my reaction to it. but to close for now all is going well. three more treatments and i am done! cancer free and no more chemo !!!!! 🙂

  67. Andra

    Hi Sally,
    The generic name for Claritin is Loratidine (no pescription required in U.S,A), and the mechanism of action is unknown. They are anecdotal facts about it, but it looks is working. In my case, probably the association with dexamethasone, helped me to get through.
    Taxotere is less allergic then Taxol (Paclitaxel) and the numbness and tingling in feet and hands (neuropathy) is lesser. About the fingernails, after eight sessions of TAXOL there is a slightly change in color (yellowish, but no fungal signs);they are more frail, I use a strengthen nail polish (Sally Hansen is the brand) and it’s quite well.
    Think positive, because they are no more Neulasta shots! Even the white blood cells counts will drop a little bit, usually there is no more need of this.

  68. Elizabeth

    Thanks for all the tips regarding side effects, etc.. of Neulasta. I am starting my 2nd treatment of Folfiri this coming week for colorectal cancer that has now spread to the lungs. Has anyone been on this particular chemo regimen? I went through 6 months of chemo (Folfox) last year from Jan. to June, and 6 weeks of radiation that ended in September of 2011. However, the remission only lasted a few months before it attacked the lungs. I received my first shot of Neulasta after my first Folfiri treatment 2 weeks ago, and although I was taking Claritin – the pain in my lower back was still pretty bad for a couple of days. I took several medications, but the one that gave me the most relief was Aleve. The worst side effect from Folfiri so far has been severe diarrhea and fatigue. However, I find that if I get up and move around as much as possible – I feel much better. I am using Biotene toothpaste and mouth rinse to help prevent mouth sores. It worked really well during my previous 6 months of chemo (not 1 mouth sore), so I’m hoping it works as well this time around. I’m grateful to have found your website as I don’t feel totally crazy now after hearing other patients complaints. It’s hard to explain to family members just how bad I feel on some days. After all the treatments I’ve been through – I have to admit that I finally understand why some cancer patients want to give up.

    • Andra

      Just do not give up. It’s hard to talk when you are in pain, tired. And you are not crazy; the side effects, the worries about food, bills etc are building-up. Give yourself some time and give time to people around you. Last night, an acquaintence called me, talking about her deppression; one hour on phone. I listen and encourage her as much I could. Despair and loosing the mind are feelings which the antidepressants are mavbe useful. But a shoulder to cry is better, even is a “virtual” one.
      Keep thinking positive.

  69. Andra

    Hi everybody,
    Today was my 9th session of Taxol. The labs panel is better than last week, even I was feeling very tired and the neuropathic pain was difficult to handle. The lymphedema on my forearm is regressing, but there is that painful “cord” in arm and a lot of scar tissue in my armpit. I’m working who
    occupational therapists and we hope to improve the situation. I will have an appointment soon with the radiologist oncologist. There is another step which I have to watch closely.
    Towards the end of chemotherapy I feel that I’m loosing my patience, but there are only 3 left, so three more weeks.
    At my work, I’ve got something unexpected. One of the coworker complained that the only task which I asked to do for me is too much for her. The others are fine and are trying to help me as much they can and they encourage me. This person is doing only what she wanted; my coworkers who worked with her (when I was “off”) told me she has the same attitude of arrogance. I’ll resume this “unwanted task”, but is not going to be easy for me. The pain does not let me doing certain things. Effectively, the previous evening, I was crying and doing my stuff. But, Taxol will be done soon, and the pain will be improving (the numbness and pain can persist for months and in some cases for years). I’m working less hours for a while, so I’ll have more time to recover from chemo. Radiation will be an another challenge. And I’m busy with a lot of appointments, so I’m trying to pass this difficult moment.
    This weekend I’ll attend a baby shower and Sunday evening I want to be with my people in church. I hope to find energy and to control the pain enough well.

  70. Andra

    Hi,
    Rainy day…. My hands, knee and feet joints are hurting so I call in sick (not a happy day for my boss). I took some Tramadol (Ultram). Yesteday I met my radiation oncologist – 33 radiation sessions, starting from June and 25 -30% chances for a moderate/severe lyphedema. Now, I’m working hard with OT to prepare the arm for this challenge. I have scheduled a lot of appointments. I’m tired, but there is no other option. Just keep going.
    Blessings for all you.

    • sally vowles

      hi andra, i’ve got 1 more chemo session then 30 radiation sessions in july. i had 22 lymph nodes removed when i had the cancer removed with 3 being positive. so i suppose my chances of developing lyphedema are the same as yours. i will be discussing this (i hope!) with my french oncologist but belt and braces, what are you doing to prepare your arm yourself? lots of love sally

  71. Andra

    Hi Sally,
    Just I came from the oncologist’s appointment. The labs are looking good enough, so there are chances to finish Taxol on May 18.
    Regarding the lymphedema, it is a hot topic in cases like us. Now I’m working with occupational therapist (OT) certified in lymphedema (not so many available). There is something called manual lymphatic drainage for upper extremity. In fact you learn how to “move” the fluid from the affected areas to the one with good drainage and to create a pathway for the lymphatic fluid. The OT can do this for you too. Also because there is a lot of scar tissue in my armpit, there are stretching exercises and OT is trying to “soft” this area. The radiation is going to increase the inflammation and compression on my remnants of the lymph vessels.
    My radiation oncologist told me there are 25-30% chances for lymphedema (moderate to severe). During the radiation I can not do the lymphatic massage.
    It is important to have available a compression sleeve fitted by a specialist. Here, a lymphedema specialist physician can give you a prescription and there are places when somebody can fit you. My compression sleeve is 20-30 mmHg (it’s a mild one) but there are different degrees according to lymphedema severity.
    Try to find a lymphedema specialist.
    If you need materials I can scan and send them to you (including exercises). I think “KILLER BOOB” will be kind and help us in this matter.
    Keep in your mind that anything can trigger the lymphedema (cold, chemo, cuts, burns, travels, dry skin, etc).
    And do not forget, no blood drawn, no blood pressure, no i.v. on that arm. It’s better to have an alert bracelet.
    One more thing. The early signs and symptoms of lymphedema are:
    swelling
    a feeling of heaviness
    decreased flexibility
    aching or general discomfort
    skin tightness
    hardening and thickening of skin.
    I hope, that I was able to give you some insights about this subject.
    Blessings

  72. Hi Sally, all is well with me, I didn’t get my clearance as yet. I have to have scans in a week, just a precaution. Hope all is going well with you. Just remember what Andra said, no injections, BP’s or bloods done on your lymphodema arm. Trouble is with having to have them done on the same arm all the time, the nurses tell me my blood vessels are breaking down, oh well, guess it will have to be some other spot. Take care..

  73. Andra

    Hi Maggy,
    Good to have news from you. I know it’s hard to have tests done only to one arm (when in February, I was in hospital, they were running so many tests, so I was badly bruised). Even I’ve got the portcath (for chemo), I’m afraid to let them to use for usually check-ups; only certified nurses knows how to “hook” it. I hope after 5 years to have th same problem as you (in my case, teroretic chances are 50% to survive)…
    Otherwise, I keep working on my lymphedema (still hopes to reverse it until the radiation will start). The portcath it will be removed after the radiation (another surgery…). It’s useful, but hard for me to tolerate, because I’m petite and skinny (so no fat to cover the bulky button).
    Blessings

  74. sally vowles

    dear andra thanks so much for your message and the info therein. i would be so pleased to receive anything relevant to preventing lymphedema you can send me. if i have to give permission to release my email address, you have it, with bells on!! i’m really not looking forward to having the portcath removed. it was inserted with local anaesthic and it REALLY HURT. thanks again for your message and lots of love – sally

    • Andra

      Today was my 11th Taxol. Usually, I’m drowsy because of Benadryl (Diphenhydramine) so I take some nap after chemo . Today I was not able to sleep, just to rest a little bit (too much excitement?). The labs are a little down (Hb, ANC, proteins and albumin) but is not very concerning yet. Still, the chances to finish on May 18 are good. I’ll force to eat more “proteins” but good quality one.
      Regarding the radiation therapy, I found a deodorant which is recommended by the radiation guys; it is called ALRA (www.alra.com) (aloe vera gel, oil of cypress and lichen extract). It’s NON-metallic deodorant. Probably they will tell you about this. Also the perfumes (body lotions, soap etc )are not allowed during the radiation(risk of burning?) I bought a body wash and shampoo used in hospital manufactured by Convatec (www.convatec.com) called Aloe Vesta (it was recommended by the pharmacist). I’ll try it to see how do I feel. It’s better to avoid rubbing to much your skin during the shower, The marked areas for radiation will not be rubbed, only a little soap and running water. Also they will give me a special cream for that areas to apply. Eucerin is o.k. to use as a lotion for dry skin. Did I say somewhere that dry skin may trigger the Lymphedema ?
      I ‘m waiting for a sign from our dearly host regarding the exchange of e-mails for information regarding lymphedema (exercises) .Meanwhile I start scanning them in PDF, but I can convert them in WORD if your PC will not be able to open the PDF. Just let me know which way is better for you.
      I’ll do little more research about this so you can have more information accessible. The lymphatic massage description I think I can post it. It’s a little bulky and it’s better when somebody shows you instead of reading; the instructions are well written.
      I revied 2 movies with Louis de Funes (Le gendarme…) Unfortunately I forgot most of my French learned. But stiil I was able to understand. Of course the speed was to fast for me. But I ‘ve enjoyed them, even my neuropathic pain was 6-7 (on pain scale of 10). Laughing is good.
      One more session of chemo left…
      Blessings and have a good weekend!

      • sally vowles

        dear andra, thanks so much for your message. my daughter says PDF is better format but my computor can handle WORD as well, complete gobbledegook as far as i’m concerned, i’m the computor equivelent of a cave dweller! i’m approaching my last chemo of 6, i don’t know how you have dealt with 11, i shudder to think if i had 5 more. thanks again, lots of love sally

  75. Andra

    Hi Sally,
    I was a very hard day for me, but I’ve completed the last 12thTaxol!!!! The labs were somehow o.k. (proteins and hemoglobin holding on), but the unexpected ANC=1.3 (down from 1.8!!) made my heart to sink…. Anyway, the value was enough good for a full chemo, so it’s DONE! Of course, again, more care about infections, but I’m less scared. I know that with God help I’ll rebound to normal until the next labs due (June).
    I create a different user account on yahoo:andrapal11@yahoo.com; it’s a back-up address and I can handle spams and other unpleasant e-mails from malicious people. Please, contact me on that address, and we can talk more about our battle with cancer and other related issues. Of course I do not forget to post on this blog, because people in our condition are in need to stay connected and keep us positive as much we can.

  76. annmarieliz

    Hi Sally and Andra, I have the miracle remedy for no aches, pains, headaches…just feeling like the worst flu after taking Nuelasta…Take Zyrtec, the allergy medicine. The nurses on my clinical trial unit suggested this to me. Yes, it does make you sleepy, but I take it for 4 or 5 days and I dream away the pain…I have used this for the last 5 months and it works every time. After a 3 year battle with ovarian cancer I just finished my last chemo (this round was 12 carboplatin and doxytaxol for 12 months) and will take the new Ovarian Vaccine that will give me remission for many years with no side effects, YAY!!!…I have not been able to work or take part in social events for the last 3 years because the treatments were so harsh on me…but I always keep a positive attitude and surround myself with encouraging people who love and care for my well being…It’s about time to live…and I can’t wait to take part in this wonderful world again!! Best of luck to you…never give up, life is a gift to be treasured 🙂 Ann

    • Cheryl

      Hi Annmarieliz, What ovarian vaccination? I was diagnosed with stage 4 ovarian cancer in May and am on the Carboplatin and Taxol protocol, once every 3 weeks, 6 total my doctor hopes. I haven’t had ovaries for 20 years, but apparently I must have had cancer when they were removed during a hysterectomy for fibroids. Back in those days they didn’t biopsy everything. Anyway masses were found in my lung.this year. 3 years ago I had a large (3 litres) pleural effusion around the same lung. No cancer detected, but my CA125 levels were double normal. No follow up was done and I felt fine. SO, here we are, 1/3 of the way through chemo hopefully. Very difficult chemo for this body the 6 days after infusion, but there is a pattern so that is a blessing. At least it appears that on day 3 such and such happens etc. Well, a week after the 2nd chemo, my wbc were lower than after the first chemo so he gave me the shot. Now I had heard a few things about it and was not excited, so the nurse told me about aleve and claritin and actually gave me some. It does seem to be working, and when I guessed that I might not need any more after 3 days, I was seriously reminded to take it. WOW! But taking it resulted in relief I am grateful to say. Not working, as I teach 2nd grade, and refuse to be around all those little darlings and the multiple illnesses they give me every year Pretty much exhausted most days anyway. So, tell me about this ovarian vaccine!!??
      Thank you.
      Cheryl

  77. Andra

    Hi Mike,
    Great news! Just stay strong until the chemo is done! I was able to stay on good ANC for 11 weeks of Taxol; on the last one the ANC has dropped dramatically, but anyway I made it. So, keep an eye on! My chemo is done, but now I’m working for the next step; radiation. It looks an easy one, but in my case it is not because of some issues. So I’m going to have a long summer…
    Blessings.

    • mike

      i’m happy to hear your good news and i’ll keep all of us in my prayers. this summer will be worth it for you i’m sure all be it tough. i was not a big fan of my radiation but it worked for me i still have the burn marks but the pain has long been gone. i must say however that it completely removed one of three tumors so i am glad i did it. i hope your treatment’s are even more sucessful than mine…

  78. Hello. Thank you so much for this blog. I have advanced colon cancer and have had 9 chemo treatments every other week for months. I got the neulasta every time since the 2nd treatment then when they changed one of my (3) chemos, I begged them not to give me the injection. Apparently you shouldn’t have the neulasta with the first of chemos, so I didn’t have it. The ironic thing is, though, that the hip pain has gotten increasingly WORSE and as several people mentioned in posts, it got me to the point of tears a few days ago. They first told me to take Tylenol, which I did for quite a few weeks. Then it wasn’t enough and they gave me Narco which barely does a thing except makes me feel more cheerful! Now this week was when I had the worst pain ever and almost went to the emergency room. Instead I just went and got in bed at 8 at night and stayed until morning. That did help somewhat. But the thing is, I went to my primary doctor yesterday and he told me he didn’t think the pain was from the neulasta, but some kind of back pain. Huh? He told me to walk as much as possible. So I DID go for a tiny walk right after that, then went for another walk again this morning. I haven’t taken a pain pill yet, but now I need the oncologist to reiterate that this pain is from the neulasta and not from something else. The thing is, I don’t understand why it would be getting worse when it has been 4 weeks since I had the injection. (and my WBC is borderline). As many have said previously, the chemo is not so bad compared to that injection. Thanks again for all the sharing.

  79. mike

    tuesday 7/2/2012 is my last treatment (chemo) and i have maintained an exceptable blood count level without neulasta. i have talked to many people being treated with both and it would seem that it does not effect all the same. i was one of the people who received great pain from neulasta, but luckly as i said my levels were within treatable ranges a bit low but still good to go for my chemo. i pray for us all and keep you in my thoughts we can win this battle! i would like to pass on one tip it is that when i gave in and let depression take hold all things were worse pain and side affects, i know it’s hard sometimes but keeping your head up and positive thoughts go a long way in feeling better. i will check in from time to time to celebrate our victories over this illness. God’s Speed to you all…

    • Andra

      GREAT Mike! You are a HERO!
      WE are in the battle with the same enemy. And is not only the cancer. Also the chemo and radiation consequences are not easy to be fixed (when is possible).
      The best wishes for you!
      Blessings

      • mike

        I have had my one year ct scan, and all is clear no cancer. I had a colonoscopy and there was one polyp but no worry. so i’m four years away from being considered a survivor. but I know I am one now. thank you to all of you and fight hard even when it gets hard…

      • Wonderful news, Mike! No feeling like a clean scan, is there?! 🙂

      • Andra

        Yes!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It’s a victory in a very lengthy battle, and each one counts.
        Also for me, it’s almost a year since I’ve finished the treatments. I’m doing fine, working, exercising (trying also Tai-Chi), watching my weight and improving the cooking. Being on Tamoxifen is not easy (joint pain and disruptive hot flashes which are impacting the sleep!), but I’m handling it. Also I had some counseling sessions. The bone scan is negative. The blood work is o.k ( W.B.C.slightly below the normal but A.N.C. is strong). The lymphedema is o.k.; still the breast is swelling, The vision is good.
        The ASCO guidelines is considering cancer as a chronic disease and a Bill is introduced in Senate.
        For all of you blessings!

  80. lisafisher

    HI, I HAVE BEEN READING ALOT OF THE STORIES ON HERE AND JUST WANT YA’LL TO KNOW ALL OF YOU ARE IN MY PRAYERS. I DON’T HAVE CANCER BUT I HAVE NETROPENIA SINCE THE AGE OF 13. I HAVE HAD SPLEEN PROBLEMS AND GET SICK ALOT. I HAVE LOST THE BONE IN MY FRONT TEETH AROUND AGE 16. WELL MY MOM KEPT PUSHING ME TO GO TO THE HEMO AND FINALLY I DID APRIL 2010. I STARTED SHOTS WITH NEPOGEN AND WAS GETTING THEM EVERY WEEK AND WAS MISSING WORK TO GO GET THEM SO HE CAME UP WITH ANOTHER SHOT WHICH IS THE NEULASTA. SO NOW I GET IT EVERY 2 WEEKS TO BOOST MY WHITE COUNT. I HAVE BEEN TAKING IT FOR AROUND A YEAR AND A HALF NOW AND MY COUNT STILL GO’S BACK DOWN. I ASKED MY DR. HOW LONG WILL I HAVE TO TAKE IT? HE SAID I HAVE PEOPLE THAT HAVE TAKEN IT FOR 3 YEARS BEFORE THE WHITE COUNT STAYED UP ON ITS OWN. I HAVE EXPLAINED TO MY DR. HOW BAD THIS SHOT MAKES ME FEEL. I HAVE SEVERE BONE PAIN, NAUSSA, I GET HOT& COLD LIKE I HAVE THE FLU, I BREATH DIFFERENTLY MY HUSBAND SAYS, SHORTNESS OF BREATH,AND GET ALOT OF MUSLE SPASMS THROUGH MY BACK,NECK,KNEES. I STARTED TAKING TYLENOL BEFORE THE SHOT AND AFTER BUT ITS NOT DOING ANYTHING. EVEN WITH THE SHOT I STILL GET SKIN INFECTIONS AND ULSERS. WHICH MY DR. DID GIVE ME SOME MOUTH WASH THAT NUMBS YOUR MOUTH. WELL I’M JUST LOST FOR WORDS WITH THIS DR. I WAS ABLE TO MEDICAL RETIRE FROM THE POSTAL SERVICE AT 39 YEARS OLD BUT STILL FIGHTING FOR SS DISABILITY. I KNOW THERE ARE FAR WORSE PEOPLE OUT THERE THAN ME BUT TAKING THIS SHOT PUTS ME DOWN FOR 2-3 DAYS AND PLUS HAVE INJURYS FROM THE JOB. BUT I DON’T SEE HOW PEOPLE WORK WITH TAKING THIS SHOT. MY DR. SAID WELL YOU CAN GET THE SHOT ON FRIDAY SO THE WEEKEND YOU CAN FEEL BETTER SO YOU CAN WORK. WELL THAT SOUNDS GOOD BUT I HAVE 3 KIDS THAT I HAVE TO LOOK AFTER AND FEELING LIKE A TRUCK HAS RUN OVER YOU, YOUR NOT TRYING TO LOOK AFTER ANYONE. ALSO HAVE NOTICE THAT MY LEFT SIDE OF MY CHEST HAS BEEN HURTING, I JUST DON’T SAY ANYTHING TO THE DR. CAUSE HE JUST LOOKS AT ME LIKE WHAT ELSE AM I GOING TO COME UP WITH. JUST GLAD TO SEE THIS PAGE BECAUSE I THOUGHT I WAS JUST BEING A BABY 🙂

  81. Andra

    Hi Lisa,
    I understand your feelings. Currently I undergo to radiation therapy (18 done, 15 more to go). Sometimes I feel miserable because the consequences of chemo are driving me crazy (joints and muscle pain, numbness, pain and tinglings on toes and fingers) and horrible hot flashes (day an night). Still I hold on and keep going. And you have three kids and for that really you have an excellent reason to fight.
    For your condition, why do not ask for a second opinion? You might be a candidate for bone marrow transplant or might be other options than this therapy. Please, consider a university or medical research unit. You can find better specialists. Do a little investigation. Keep in touch.
    Blessings

  82. Karen McReynolds

    I have a comment to make about neulasta. My mom got her 5th neulasta shot on July 9, 2012 and she died on July 10, 2012. I know it was that shot that killed her. She had problems everytime that we did chemo and got the shot. This time was different because we forgot to go over Friday morning to get the shot and they closed. They called her and said be here Monday morning. She had chemo on July 5th and was told that she needed a transfusion that her RBC’s were too low. Her RBC’s were low but all of her WBC levels were high. After chemo we went ot the hospital and she had the transfusion. She didn’t get home until near 10. She had an excellent weekend and for once she wasn’t having any dizziness or severe fatigue. I took her over on Monday morning and she got the neulasta shot. They didn’t recheck her to see if she even needed a WBC boost. She was high on Thursday why did she need it. I so regret doing that. After we came home she was tired and exhausted. Later I was told by dad that she was dizzy. Dad called me Tuesday morning and said that she was dying. I got there as fast as I could and dad was doing cpr when I got there then I took over. I am so lost without her. She went from being fine to gone in less than 24 hours. My mother had lung cancer and it had shrunk. Can anyone tell me has this happened to anyone else? PLEASE HELP

    • Oh Karen, I am so incredibly sorry to hear about your mother. There are no words to describe what you must be going through right now. It would be interesting to know if your mom/s doctor has any opinion on what happened. I’m sorry for the delay in approving your comment; I have been traveling and had limited internet access. I hope you find comfort and someone to talk to. I’m sure anyone here would be happy to talk to you if you need, though I hope that you have some wonderful support around you. All the kindest regards. You’re in many people’s thoughts. Sarah

  83. Cherylle

    I have had eight chemos for breast cancer and will have the Neulasta shot later this afternoon. I call it the “NeuNasty” shot. Hopefully, yesterday’s chemo and today’s Neunasty will be the last I will ever need. I am going to take your advice and buy Claritin D and take it before I leave for the doctor’s office. The body aches and pain have been intense, but I am willing to go through it. Thank goodness I have great insurance. Of course, I “pay through the nose” for my coverage: almost $1,700 a month; (yes, you read that correctly). I have no deductible and a $10 copay for doctor visits (not my treatments) and a charge of $5.00 for each prescription. My husband is included on my policy. Neuropathy and nail changes have been pretty bad. My hands developed a horrible rash-like redness. I used Aquaphor for that and used Avon’s Skin-so-Soft in my bath. My palms, especially the fingertips, peeled after each treatment, so I will be glad for that to stop. I also had some shortness of breath. At first, I opted for reconstructive surgery, but I have changed my mind. As soon as possible after today’s shot, I will have the expanders removed and just go flat-chested. Then I will have radiation. Even though I just found this site today and I am finished with chemo, I really appreciated reading all the posts. I have to give a shout-out for the pharmacy at our local Wal-Mart. Those ladies in our small town are the best. It seemed to me that they gave my prescriptions top priority. Before I got home from the doctor, my prescriptions would be filled–no waiting, so I was able to stay on top of the pain as much as possible!

    • Holy crap – $1700 per month! You BETTER be getting good care! So glad to hear you have caring professionals you can count on at your local pharmacy! What a treasure.

  84. Glad I found this site and info. My wife starts chemo next week, for six months, and is supposed to give herself the neulasta shot 24 hours after the chemo. After reading these posts we will know what to expect, what to look for and what allergy and pain killers to have on hand if those after- effects develop. My wife had a lump removed from her breast, two lymph nodes removed, which were clean, but has to have chemo and radiation therapy because she has the HER-2 gene. She is being treated at the Moffitt Cancer Center in Tampa, Florida.

    • Hi Dave. I’m so glad this post – and all of the wonderful, helpful commenters on here – have been helpful. All the best to your wife.

    • Bob

      Hi Dave,

      My wife is doing chemo for 16 weeks. Every other week. 4 of the dual cocktail cytotoxin and the other drug. The last 4 is Taxsol. Her side effects have been minimal except for the hair loss.

      We kind of joke around that after 20 years of marriage, we now look alike (I’m bald). I was a little nervous at first thinking of seeing her without hair, but she is still beautiful. Hair grows back anyway and it’s fun seeing her with all of her hats, head scarfs, wigs, etc. Outdoor World has a great collection of hats and scarves that look really nice.

      I’ve been strongly encouraging her to go to the gym and to do the normal things we always do (go to the beach, eat out, etc.) and to be honest, our lives haven’t changed that much. A few days after chemo she is very tired for one day or so….but after that we get on with our lives.

      I think what also helps is she drinks incredible amounts of Power-Ade so it flushes the chemo out pretty quickly. Her exercise has been helpful too. I see a huge difference when she does vs. when she doesn’t.

      After chemo is 6 weeks of radiation which they said isn’t bad.

      Good luck with your wife. We are doing treatment at Lynn Cancer in Boca Raton, Florida

  85. Bob

    My wife is taking Neulasta and has been using Claritin. No pain at all. The one time she didn’t take it and the aches started….but she took it and a few hours later, the pain was gone. She is using regular 24 hour Claritin.

    It’s unbelievable how she is able to function relatively normally after this.

    I think Dana Farber in Boston is now doing a study as to why it works in many patients.

    3 more treatments to go!!! 6 more weeks….yay!

  86. mike

    hello everyone i am almost human again! my chemo has left me completely. i did have a couple of episodes with neropathy but small and short the fatigue lasted longer but has left me. the surgeries are the only after effects i feel and i’m sure within a year they will be normal. i want to wish everyone luck and let you know that this blog does help. i will keep checking it even now that i am considered cancer free. i will be going on vacation next week one we planned in the middle of my treatment (to give me something to look forward to) i think of all of us everyday all who have this terrible disease. i have learned that we all are connected and we can all help each other, thanks Killer Boob for helping us all… michael maddox 🙂

  87. Andra

    Hi
    After nine months of chemo (16) and radiation (33), I feel somehow strange: no more numbers (WBC, ANC, SGOT, SGPT), no more schedules. It’s time for healing. The neuropathic pain, the horrible hot flashes, the muscle and joint aches needs time. I have to adjust to this new life after the “therapy”. The diet is restrictive to sweets and fat and I’m trying to avoid soy products. I’m trying to stay positive even I have some moments of “down”. I know that I’m able to beat the statistics.
    The environmental exposure is a reality. Women are exposed to a huge amount of toxic factors which are promoting estrogen and progesterone positive tumors. Food is one of them. For anybody interested in food diet, please visit foodforbreastcancer site. You’ll find interesting things, but please, use your judgment and common sense before you are using that information. Do not starve you, try to keep a healthy weight. Even you might not like kale, think that is better to have this instead of a chemo drip.
    There are least than 24 hours, and my port a cath will be removed. I do not know if it’s a wise decision. Some people keep this for years. But for me the removal will close a chapter.
    I have to focus more on my health. Also I feel that my experience is worthy to be shared. I’ll keep in touch with you guys.
    Blessings

    • Hi Andra, I too too felt like having my portacath removed was a huge thing. It felt very liberating. And I agree about the food thing…there is simply so much misinformation out there that I feel helpless to really control my exposure. I don’t trust any products/producers to really tell me the truth. It’s sad but true…so instead of turning my life upside down food-wise, I have a few guidelines that I’ve chosen to do my best with (less red meat, organic meat & dairy when possible…more veg, avoid soy, etc) but you can’t let it rule your days.

      Enjoy the fact of feeling better every day, Andra. And that you for having shared w us here! ALL the best!

  88. Kym

    I don’t know what to say, or how to do this without sounding mercenary. The fact of the matter is, I am a salesperson for a product called Defensin. I am loathe to try to sell to cancer patients … but now that I’ve read about some of your problems, I’m going to throw this out there, do with it as you will. Defensin is made from Beta-Glucan. It really boosts your immune system and your WBC count AND its all natural, coming from mushrooms, so no side effects. Feel free to look it up on webmd or wiki. Of course, docs don’t always say to use it, they rarely believe natural can work, but …well make up your own mind. And don’t think I’m saying you should stop what you’re doing!!! Don’t! This would just be an adjunct. Any questions, send me an email, or call …928.713.8701 (I’m in AZ). Good luck to you! I wish you the best! – Kym

    • Cherylle

      Before I found out I had cancer in both breasts, I treated myself to a facelift. The anesthesiologist suggested a Myer’s cocktail. I took the infusion because I could not bounce back from a rotator cuff surgery. In about a week after the first infusion, I physically felt my energy return. Just before I had the portacath put in, I had another infusion, and then when the portacath and expanders were removed, I had another one. I swear by them. I healed so fast and my energy returned in full force. My first infusion was in December 2011, the second in February 2012, and the third just recently in August 2012. You might want to check into this. If I ever have to have any more surgeries, I will have another Myer’s cocktail. I do not normally look for alternative methods of anything; I just happened upon this. You can check this out online and see a doctor you trust.

  89. My last chemo for Non Hodgkins Lymphoma was in January 2012. All I can say is that since then I have had joint pain and bone pain that I had never felt before chemo/Neulasta. I keep thinking it may just be me for having been fairly inactive in regards to exercise during chemo but it is now 8 months later and my joints hurt ALL THE TIME! Anyone else?

    • Andra

      I have joint and muscle pain, even after almost 5 months since I finished chemo for breast cancer (16 sessions). I’m not a gym club client, but I walk and my job is around 75% active. You should try light exercises, a little walk outside. Also, you can contemplate some alternative medicine (massage, acupuncture, reflexology etc). The insurance will not cover this, but the pain killers are o.k. for them… I’ m not against the pain killers and antidepressants when they are needed, but for long term aches and pain is risky because of tolerance/addiction. Anyway, try to keep a positive attitude and put a smile on your face even is hard (smiling releases some substances in your body called endorphins which alleviate the pain).
      Have blessed days!

  90. Sharon Cook

    I have breast cancer, I had one chemo treatment then the next day i had to have the neulastic shot. I left the hospital 5 min. later only to turn the car around rushing back to the hospital. I had a bad allergic reaction. My throat was swallow, i could not breath, i was whizzing, The gave me steroids and benadril through an IV. I truely thought I was dying. I have to go this Wednesday for another treatment without the neulastic. I am scared to death I will get an infection. I am around kids all the time with my work. Has anyone had the chemo without taking the neulastic shot?

  91. opal

    I too, am taking neulasta.
    My doctor after taking 2 sessions of neulasta suggested I might be having an allergic reaction to neulasta, I had all the symptoms except I thought I might be loosing my spleen, I hope I am not growing new cancers this is a serious side affect of neulasta.
    I felt worse after taking the neulasta shot. I thought I would die.
    My head hurt!!!!!!!!!!!!!!!!!! My eyes Hurt!!!!!!!!!!!!!
    I have sores on my head.
    I can not eat or drink any thing sweet now.
    I am throwing up and loosing blood in my stool and it looked as if I were loosing tissue from my stomach.
    I never had this reaction the other 2 times I took chem. Ths is the 3rd bout of cancer for me???
    What should I do. My doctor said I could quit taking the neulasta: it was up to me.
    Thanks for sharing I hope this helps anyone.
    It sure has not helped me I don’t think.

    • Hi Opal – While it should always be remembered that I am not a doctor (nor even an “expert”) if you are experiencing new and intolerable reactions to the Neulasta than by all means consider passing on the next shot and see how it goes. But mostly this is a decision that should be made in conjuction with your doctor. Your comment doesn’t make it sound like s/he is very alarmed, but there is much that doesn’t get communicated in one comment. If you don’t feel s/he is answering your concerns, make that known. I should think an allergic reaction definitely merits foregoing the next round but, again, your ndoctor needs to properly discuss with you the consequences either way. Don’t be afraid to push a bit!

    • connie

      Hi I totally feel you on this!! I had nueleasta 1st 4 chemos n had to stop for 2 mos due to foot surgery with no pain or problems,Now back on chemo as of 11/29 I thought I was dying!! an hr after giving myself the shot at home a pain shot thru my back like I was shot,stabbed and hit by a car!!then hot flashes,then dizziness,This all took place within 10 minutes and then once over I was left with severe bone aching,back pain and a headache that made me want to jump of a bridge,I took vicadin,excedrin migrane,motrin 800 and for 4 days I was in hell.this is 12/7 and my head still aches it is bearable but my God this is worst than the canacer its self. They say you can get a lesser dosage by getting it 7 days for a week in a row,which I may do because this is hell.My 1st chem I took claritan 1 hr prior to the shot and I felt no pain but this time maybe cuz its paxitol n the shot its worst..

  92. Barbie

    Hi, I have/had rectal cancer. Chemo/radiation combined for five weeks, surgery, temporary ileostomy and now another round of ‘precautionary’ chemo. No side effects with first round of chemo. No weight loss. nothing. Second round of chemo, well, no reaction to the chemo, but my levels were down and I had a neulasta shot after my second chemo. Wow, did this knock me out!. Third chemo went ahead, no neulasta, no side effects. Fourth chemo, needed neulasta. Side effects worse. No pain, but such fatigue I could not get out of bed. Went for fifth chemo yesteray and my levels were too low. Spoke to nurse, she said fatigue was not a side effect of neulasta. Maybe someone needs to tell the drug company and medical profession that it IS a side effect. Will continue chemo, and speak to the oncologist next week, but will decline neulasta – which is my right.

  93. Stacy

    Hi my Name is Stacy. I have Triple Negative Receptor Breast cancer. My experience with Neulasta has not been a good one at all. My Chemo treatments are a piece of cake compared to this shot. Yes, I have tried Clairitin with taking both tylenol and advil. I have ended up in bed 3 days after each shot, with bone and muscle aches so bad all I can do is cry. 3 days after my last shot my ex husband, now friend had to take me to the ER, the Md I saw there took no time in giving me Percocet and told me to ditch the tylenol/advil clairitin combo I had been told to take. He could tell just by blood pressure this med (neulasta) was causing me extreme pain of course since it was 204/120 it was a given. I also ended up with Pneumonia. My Oncologist told me it is not all that uncommon for some to get Extreme pain and all they can do is give you heavier pain medicine. Funny though you won’t see anything about the extreme pain and bruising on Neulastas website, actually there is very little helpful information on their Website. So if your having extreme pain don’t try to deal with it, tell you oncologist right away, and if it’s after hours go to the ER. Don’t let yourself suffer, your already going through enough, you don’t need to feel this pain as well. That’s. My 2 cents worth

  94. Hey everyone my name is rick and I was diagnosed with esopghagial cancer 2012. Without all the details and lord knows they are all the same terrible things everyone is talking about here is that everyone is different and that not everyone tolerates neulasta and chemo the same. Drs.Just don’t want any weeks to go by that effects the rhythm of your individual chemo cycle. If it happens, it’s like fighting a tarpon here in fl (fishing) you let that sucker come for short breath of air and he’s good for another 15 minutes of fight left. Neulasta is really the only thing they got so its used all the time.Chemo, radiation and surgery were over in 2012, and I had my 5th out of 6 yesterday april 4th. Today yes I must say was my neulasta shot. Yea it’s going to hurt but its working and I bet my bone marrow is tired, maybe more tired than I am. The only Way I got through this was one day at a time and my wonderful wife. Kick the cancers ass than piss on its grave!!!

  95. Kelg2

    I have worked in an oncology clinic giving chemotherapy for over 11 years. Neulasta does work +90% of the time! Yes it can cause severe bone pain. BUT because it is given the day after chemo (when the chemo side effects usually start), sometimes the chemo side effects and Neulasta side effects can’t be told apart. Chemo can cause bone and muscle pain and fatigue. AND with each treatment it can get worse. If Neulasta doesn’t work to get your WBC’s up, then you should ask your doctor about Neupogen. This shot works a lot like Neulasta but you have to take a shot everyday for up to 10 days. I would definitely recommend starting Claritin 10mg about 3 days before your Neulasta shot. Good luck to all of you out there fighting this battle! And remember, it is different for everyone, so don’t get discouraged!

  96. Neville

    Does anyone have any first-hand (or “near-hand”) experience with using antibiotics (specifically Levofloxacin / Levaquin) to help WBC get back up to an acceptable number?

    How about using Low-Dose Naltrexone? I mentioned in a reply to an old comment that it was supposed to help with immune regulation, but don’t have first-hand experience.

    My wife has Diffuse B-Cell NHL. We are self-pay patients with membership in a Christian cost–sharing that works very well for most medical expenses. However, my wife’s blood work after her first chemo round showed WBC to be extremely low. The doc prescribed Neupogen but the oncology office will not bill, it only accepts payment at time of service, and we don’t have $10K to float until the member’s reimbursements start coming in. So we had to leave without it.

    The lovely bride is now taking LDN and Levaquin and staying secluded at home for the rest of the week.

  97. Linda

    I hated reading about all the pain from neulasta! After my first injection, I took Claritin and Ibuprofen, and it wasn’t as bad as expected. Then a friend who was going through chemo said Alllegra three days before and three days after. No pain AT ALL,
    Also, I’m taking gabapentin for neuropathy and a med for incontinince. NO ONE ever told me that one’s bladder could react to the neuropathy!

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