Neulasta - Hodgkins Lymphoma

Hello everyone!

So I've been diagnosed with Stage 3 Hodgkins Lymphoma, I'm supposed to have 4 cycles of chemotherapy (8 treatments), I've had 2 treatments so far, and after the first treatment my white blood cell count went way too low so my oncologist had me get a Neulasta shot after the second to fix that.

I. Hate. Neulasta.

I was in horrible pain starting Saturday night lasting until Tuesday morning. It started with severe muscle aches and gradually my bones all over began aching too, and I had other side effects such as: a slight temperature at 99 (Monday night), extreme fatigue (Sunday and Monday), severe headaches (everyday), heart beating too fast (everyday), heart throbbing when I bent over which caused the pain in my bones to become a throbbing pain as well (everyday), and the night that I had the shot I felt a few twinges of sharp pain around my spleen but they only came and went for about an hour or two and then I never had anymore pain there. On Sunday I had trouble eating because my tongue and jaw bone hurt so much, and I was in bed most of the day that day, and on Monday I was in bed all day because I was in too much pain to do anything.

I took Tylenol which didn't seem to help at all, and I read online that people swore Claritin made the pain stop for them so I took that during it (whether it helped or not I'm not sure).

Now, here's what really gets me...

I was all ready to suck it up and just go through Hell every other weekend...but my bone pain has come back today (Friday). It started over night, I have bad pain in my lower spine, hip bone, and where my legs connect to my hips. I did stop taking Claritin once the pain stopped a couple days ago, so I've started taking that again to see if that's the reason why, but this really stinks.

So I wanted to know, are there any other options for me? Have any of you opted to get the shot over several days instead of in one injection, and how did that go for you? Also, could I get a partial dose instead of a full dose of Neulasta instead?

Thanks everyone, and good luck with your treatments!

Comments

  • 4 Comments sorted by Votes Date Added
  • I got Neulasta as part of my treatment for AML in 09. I got it after my chemo finished, one injection, that really wasn't very much. I only had mild soreness symptoms...sort of a dull ache. I am not sure if I was getting a similar amount of it as you get, but your symptoms are much worse than mine. I was actually given a prescription for some narcotic pain med or another "just in case", and I never touched the stuff for that reason. I only ever used it when I got sore muscles from my physical therapy.

    I did look at getting it differently and I found that the insurance was VERY picky about it. And it's VERY expensive stuff. I think it was something like $15,000 per injection that they gave me, and my insurance only covered it if I got it at the hospital that gave me chemo, which was 3 hours from my house. They would only cover about half of it if my local oncologist gave it to me, and they wouldn't cover it at all for self injections. I suspect your insurance would be loathe to cover the neulasta if you wanted to change the way you received it.

    If the Claritin works out for you and doesn't interact with any other meds you're taking and your doctor is cool with it, I say have at it.
  • I can relate. I got a neulasta injection after every round of chemo (8 rounds). Claritin really helped me. I took it for 2 days prior to the injection, the day of and 3 days after (6 total). I am not going to say it 100% eliminated the side effects of feeling like crap but it really made a difference. I was also told that zyrtec works better for some people.
  • I had neulasta injections after each round of chemo for my breast cancer treatment. It was like clockwork--chemo on Thursday, Neulasta at 11am on Fridays and by 9pm Friday night I would be in awful pain. My bones ached so bad that i would just lay on the couch in one position and not move. The pain wouldn't subside until Sat. night. After about three rounds, I told my oncologist that I couldn't take it anymore and I would just space the chemo treatment over a longer period and not take the neulasta. Instead, he gave me steroids, one pill with the onset of pain and then two pills a day for the next two days. It cut the pain down to almost nothing! And I was lucky that I didn't have any bad side effects from the steroids.
  • maybe that's why I didn't have much pain. I was on daily prednisone for about 9mo straight. I would also get hopped up on IV benadryl pretty regularly. I know I got it when I got blood transfusions (frequently). not sure when else I got it.