Has anyone refused neulasta?

Rocky41102

I had my second cycle of TC a week ago. Both times I've had a really fast heart rate, dizziness and fever after the neulasta goes off for over a week. The heart rate increases shortly after and then I start running a fever a few days later. The first cycle my oncologist thought I may be dehydrated so gave me fluids and then prescribed an antibiotic when I still had the fever. All was well and good until this round. Same thing happened but it's worse, higher fever and faster heart rate and more pain in my lower back. My blood work is all good. Currently the onco prescribed me an antibiotic again just in case and they sent lots of blood off to be cultured to see if there's some kind of infection they're missing.

I'm wondering if I'm having a reaction to the neulasta though? My WBC count has been high each time it's checked, so I'm thinking about refusing the neulasta next time to see if that helps or at least let's me know if it's the neulasta or just chemo side effects. I also don't want to end up hospitalized but at this point I'm considering stopping chemo altogether, it's been so rough. But I was never asked if I wanted neulasta so I'm not sure how to even approach it. It was just a given that I get it as a preventative.

FarAwayToo

I would definitely discuss this with your doctor. Are you doing dose dense regimen (every two weeks) or are your infusions 3 weeks apart? I'm not a doctor, of course, but I was told by my oncologist that if I received my AC portion of the chemo on a 3 week apart schedule, I would likely not need neulasta.

It is quite possible your WBC would recover just fine without neulasta if you are on a 3 week schedule, but you definitely need to talk to your oncologist about it.

I didn't need any growth factor drug (such as neulasta, neupogen etc) during my weekly Taxol - I believe it is standard to not administer these drugs for weekly low dose Taxol UNLESS the patient shows leukopenia (low WBC). i was doing dose dense AC after Taxol and by then I definitely needed something for my WBC to recover in two weeks. I had a stomach bug 4 days after my 1st AC (and neulasta) and my WBC were at 1.8. So, I can't imagine how low they would be without the growth factor. I did ask my MO about skipping neulasta after my last AC, and she quickly agreed. These drugs are not without risk, but they do provide the benefit which might outweigh the risk. What's important is to do risk-benefit assessment with your oncologist.

Good luck and I hope you feel better.

Rocky41102

I will definitely talk to him. My infusions are every 3 weeks. I'm pretty sure I might try a cycle without the neulasta so hopefully my onco agrees!

FarAwayToo

Rocky, they may ask you to come for bloodwork a week or so before the infusion to make sure your WBC are bouncing back. Also, keep in mind that the more treatments you had, the longer it takes for the bone marrow to recover. So you may be fine for TC #3 and #4 but not for later ones. I don't know how many treatments you need (I think sometimes it's 4 and sometimes it's 6).

Hugs!

MinusTwo

I would not have made it through w/o Neulasta. As far as I'm concerned, it was a miracle drug.

muska

I am not familiar with TC regimen and can’t say whether it’s more impactful than AC when administered every three weeks (not dose dense.)

I had AC every three weeks some seven years ago and one of the reason I selected this regimen over another option, it did not have Neulasta requirement.

Rocky41102

Today was rough! Woke up with a pretty bad case of hives that kept spreading so had to go to ER. Have no idea if it was a delayed reaction to TC or neulasta or what but I'm good now! I have to follow up with the onco when he gets back in the office so we'll see what happens then!

Rocky41102

I'm only supposed to do 4 cycles. This time my WBC on Monday was 4.5 and today it was 25. So far my oncologist office just has me down as a mystery so I'm not sure what we're going to do!

oldladyblue

I have been on TC, 3 weeks apart, since early Oct.

After my first TC, I had rapid heart rate, a temp that flip flopped from 99.6 to 98.0 and back again for days, among other side effects. (No shots for WBC boost).

After my 2nd TC, I got a 3 day low fever of almost 100 with chills, rapid heart, and a terrible rash, among other side effects. Went to the ER, was admitted to the hospita with a WBC count of .5 (very low), and then got my first Neupogin shots in the hospital. Got terrible achy bones from the Neupogin but WBC count rose dramatically to a very high count of 47 after 3 shots.

At my 3rd TC, my WBC count was down to 25 from the high of 47 in the hospital. I had 7 days of Neupogin shots to inject myself. WBC count went from 25 (high), to 2.5 (slightly below normal) a week after chemo, No achy bones from the shots, no fevers, a bit of racing heart still.

My 4th and final TC is Friday. I think the rapid heart rate is from the TC, not the Neupogin, as it started with my 1st infusion.

Since I ended up in the hospital after 2 TC infusions with no Neupogin, I will for sure take the shots again this last infusion.

Castigame

yes neulasta... I thought I became an alien when I had them. Total 8

The pain from Neulasta was bad enough I had opioid added tylenol at intervals, extra plain tylenols, twice a day epsom salt baths, anti anxiety meds were not enough to wake me up from pain.

Yes I pled with my onco not to give me the green things to no avail.

At the end, I believe Neulastas were definite Net gain for me.

jhl

Hi Rocky,

There is a very rare syndrome called Sweet Syndrome (named after the guy who discovered it - Dr Robert Sweet). It is characterized by fever and a sudden appearance of a rash. There are lots of causes but one is drug induced. The most common drugs are the GCSF's like Neulasta. It is reversible when the drug is stopped. The only treatment is the use of corticosteroids but that is often not necessary.

If it were me, I would be hesitant to use the Neulasta again. I think you need to have a good conversation with your MO.

Stay well,

Jane

LeesaD

I had four rounds of TC with neulasta given day after each round. After first neulasta shot in the evening my back pain was excruciating. Was up all night and couldn't sleep. Had never experienced back pain like that ever before. When I called my oncologist, he said the back pain meant the neulasta is doing its job and what it's supposed to do and making those white blood cells in my bone marrow. He checked my white count a week later and counts were good. He told me that the next time I got the neulasta shot to just take Claritin. I did and didn't have anymore back pain for the remaining shots. I think I remember reading on these boards somewhere others saying Claritin helped them also with neulasta side effects.

MinusTwo

Yes Claritin worked like a charm. The regular not the "D". I took it the evening before chemo & for 3-4 days thereafter. Really didn't have many aches & pains as long as I remembered. I never did hear why it works, but Leesa is correct - there are posting all over this board about it.

Rocky41102

Yes, I've been taking claritin with it. I actually haven't had much bone pain, just mild leg pain here and there. The nurse thinks I may be having a reaction to the neulasta and not the chemo. I haven't talked to the onco yet but I'm scheduled to see him before my next chemo on the 21st so I'll see what he has to say then. I'm hoping I am comfortable with his plan. I'd hate to leave and cancel the treatment last minute.