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.