Long term bad side effects of neulasta?

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Magnolia
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Re: Long term bad side effects of neulasta?

Postby Magnolia » Tue Jul 29, 2008 10:25 pm

Suzie, if a pain in your thigh is all the problem we're talking about, and the drug really is the reason you'll be seeing your kids grow up, I agree with you 100%. But stimulating bone marrow to spew out white cells at breakneck speed increases the risk of transcription errors, as does any process that excelerates cell growth. That's how cancers develop. The article (not a medical journal artical, just a general news article. I'll try to go back and find it) I read cited a small increase in the rate of leukemias in patients previously treated with these drugs. Not enough to warrent stopping the treatments, but enough, IMO, to warrent some caution. People who need it bacause low counts are preventing them from getting their chemo, or putting them at risk for serious infections, of course should get it. No argument from me. If you fell into that catagory, you're absolutely right. You needed the drug and it was worth the price you had to pay. When people's counts haven't dropped at all, like mine for most of my treatment, why waste the healthcare dollars and risk long and short term side effects? I didn't need the drug, and apparently neither did several others on the board. I can't help but think some of the people who got it didn't need it either.
Dx Stage IIIC CC 3/10/06
Surgery 3/20/06
Folfox 4/06 - 10/06
Avastin 4/06 - 4/07
NED!


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Ista Rista

Re: neulasta

Postby Ista Rista » Wed Dec 31, 2008 4:02 pm

fishingwv wrote:I had neulasta 2 years ago and I have tried to find anyone else with long term bone pain. My bones have not been right since. I am in pain all the time. My cancer doctor just blows it off. My bones were never like this until I had 4 injections of neulasta. Just wondering if anyone else felt this way.


I am sorry to crash your club, but I had Hodgkin's Lymphoma and 12 rounds of ABVD with the stupid shot 24 hours after all but 1 of the rounds. I ended up in the hospital after the first one because the pain was so bad. Now 12 months after my last shot, I am in the same amount of pain I was in during the last cycle. No doctor seems to believe me and my pain medication has now been stopped. My skin feels like it it is melting, and I get no relief. I didn't have back issues until the shot. I was 23 when I started on the shots because my white cell counts were extremely low ... somewhere below 3 I think. I did ballet and ROTC in high school and was incredibly active. Now laying on my tummy brings me to tears. I personally believe I am experiencing the same kind of bone pain caused by neulasta.

My lower back and hips have been effected. Anyone else with these issues? If people have gone through this process, what can be done? This can't be how the rest of my life will be. Any tests that doctors can do to find anything?!?!?

Magnolia
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Re: Long term bad side effects of neulasta?

Postby Magnolia » Wed Dec 31, 2008 5:52 pm

Welcome, dear visitor. I wish I had some helpful information for you. As you had a blood cancer, you probably had more of a reason to need the drug than some of us did. The fact that you are having pain from it is very unfortunate. There's a possibility it will improve with time. Has anyone had experience with this. I know I had a lot of shoulder pain with my one dose, but it resolved. I now have some hip pain, but I'm thinking it's more bursitis than joint pain. I've had arthritis in my hips for years and this is different. I'm over two years out from chemo, and any minimal side effects I have left are likely to be permanent. Lots of things improved over the first year or so.
Dx Stage IIIC CC 3/10/06
Surgery 3/20/06
Folfox 4/06 - 10/06
Avastin 4/06 - 4/07
NED!


http://www.CoverYourButt.org
Healthcare is a right, not a privilege.

Ellen
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Re: Long term bad side effects of neulasta?

Postby Ellen » Wed Dec 31, 2008 6:23 pm

I was concerned about Neulasta, but after having low counts and a treatment delay, my onc wanted me to start neulasta. Because of my reluctance, we discussed it for a while, and ultimately my onc set a particular criteria for whether or not I'd receive the shot. Each cycle, if my anc is 1.9 or below I get a shot when I disconnect the pump or the day after. If my anc is above 1.9 I do not get the shot for that cycle. I'm very happy with this decision--it's clearcut and seems to make sense. For a few cycles I was getting the shot every other cycle (1/month). More recently I've needed it less often (I haven't had a shot in almost 2 months!) My side effects from the shot have not been nearly as bad as others, so I feel lucky in that way.
Stage IV CC
Colon resect, chemo, unsuccessful liver resection 2/07-11/07
Bile leak/progression 12/07-4/08
Folfiri/Erbitux, Folfiri/Avastin 5/08-6/09
Olaparib 7/09-9/09
Folfox 10/09-1/10
MitomycinC/Xeloda 1/10-
43 Y.O: 2 children: 3 and 5.5 years.

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justsing
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Re: Long term bad side effects of neulasta?

Postby justsing » Thu Jan 01, 2009 9:28 am

I'm what my onc calls a chronic dropper. My white counts were low on Folfox, but he didn't give me Neulasta at that time. They PLUMMETED on Folfiri after just one cycle and he said that he really wanted me to just take the Neulasta every time henceforth. I've had ZERO side effects from it, and my white counts have stayed solidly normal every time.

I am grateful for it because I teach at a college and am in and out of crowded elevators with sniffly snurgelly students and I know that I'd be sick as a dog without the Neulasta. I'm sure if I were experiencing the pain, I'd be of a different mind. But that's been MY experience - everyone is different!

The research on Neulasta is not as damning as the stuff coming down the pipe about Aranesp. I had a chat with my onc this week about it and my H&H's are starting to dip and so he recommended an iron infusion - Infed -- followed by Aranesp. I said yes to the Infed and no to the Aranesp, and he was fine with that plan.
Last edited by justsing on Thu Jan 01, 2009 12:17 pm, edited 1 time in total.
justsing, 46
Stage IV
colon resection 12/07
Liver resection 04/08
Phase I vaccine trial
liver, lung LN mets
tried Oxi, Iri and Avastin
now trying new chemo combos then sir spheres
College prof in theatre & voice
2 girls 18 & 14, one son 10

Magnolia
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Re: Long term bad side effects of neulasta?

Postby Magnolia » Thu Jan 01, 2009 11:02 am

See? there you go. Someone who obviously needed the stuff and tolerated it well. As I said before I only had one significant drop in anc and only got one dose. I felt some shoulder pain that I hadn't had before, but that resolved. The new hip pain does not seem to be joint pain, and started well after the Neulasta treatment. I just wonder how many people get this very expensive and not entirely benign drug unnecessarily. We're all scratching our heads over ways to cut health care costs, and it would seem not using drugs that cost thousands of dollars unless we need them would be a good start. A much better idea than denying needed treatment to boatloads of people because of some silly criteria. Like not paying for hearing aids for deaf children (never covered and costs about the same as one dose of Neulasta) But, that's not the issue here. It's Neulasta. Good drug if you need it. Not always needed. Not always harmless. Maybe we can save some health care dollars and some risks and side effects by checking anc's and only using it when there's an actual drop. And Please, Please, Please, when whoever ends up making the healthcare reform decision, give the doctors a little wiggle room! If somebody's counts are a shade above the cut-off, but something else, like their job, puts them at risk, let their docs, not the payors, make the decision. When payors decide what docs can treat, it's a conflict of interest. They'll TELL you they don't decide what can be treated, they only decide what they'll pay for, but get real, at what some of this stuff costs, if it's not covered, it's out of reach.

That's not to say everyone who got the drug shouldn't have. I'm just saying it's possible it may be overused in some cases. Obviously some patients DO drop their counts and docs some docs want to be cautious about preventing a serious drop. Some my hover close enough to the edge to make their docs nervous. I won't second guess anyone's individual doc's decision. As a general trend, however, I think this may be one think that could be rethought.
Dx Stage IIIC CC 3/10/06
Surgery 3/20/06
Folfox 4/06 - 10/06
Avastin 4/06 - 4/07
NED!


http://www.CoverYourButt.org
Healthcare is a right, not a privilege.

pamdann1

Re: Long term bad side effects of neulasta?

Postby pamdann1 » Thu Jul 14, 2011 9:09 pm

I am nearly 6 years post-chemo and have been really struggling with bone and joint pain. It suddenly occurred to me that this may be residual from the neulasta
injections. shortly following my first injection, I woke in the middle of the night with indescribable pain. It struck my sternum, my cranium, and my lower back. Initially, I thought I was having a heart attack; then, the pain in my back was so intense that it seemed to be "rattling" my skeleton, causing my upper body to jerk. I was taken to the hospital by ambulance.

I have found very little info. on the long-term effects of neulasta, but my pain situation seems to be progressive and is really beinning to impact my life. Can anyone enlighten me?

stefaniecarr

Re: Long term bad side effects of neulasta?

Postby stefaniecarr » Thu Feb 02, 2012 8:52 pm

I found out I had breast cancer, I'm was 30 when I found out. I was given chemo and with the first chemo got a shot of nuelesta. That same night of the shot I would get so sick and would feel just awful for 5 days. The next round of chemo, I purposly did not get the shot and felt a big difference, I actually handled the treatment better. The oncologist was not happy with me, but my blood work came out ok. My oncologist then insisted I get the shot through the rest of the treatments, so relunctantly I did and felt like shit every time. I wish I would not have had the shot, I believe that all these synthetic drugs they give us as well as chemo are not good at all for our bodies. I have done so much research and Have found doctors that are practicing alternative medicine and helping patients cure their cancer and keep it from coming back, It definetly is a lifestyle change, BUT it does not damage your body and you don't have to go through this horrible process of chemo. It all comes down to the goverment knowing that chemo, radiation, and other drugs for chemo are dangerous even the tamoxin they want me to take causes cancer. I am currently seeing all sorts of alternate medicine that actually helps the body heal and balance the body so you can have a better quality life.

westie68
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Re: Long term bad side effects of neulasta?

Postby westie68 » Fri Feb 03, 2012 1:35 pm

Hi: I had Neulasta as well throughout my last chemo regime (12 treatments of Folfoxfiri). I didn't have any side effects at the time but now I"m wondering as I have what feels like bad arthritis everywhere. I do have arthritis but haven't had it this bad ever. I blamed it on the chemo but maybe I should blame it on the Neulasta.
In terms of when I had it, it was given 24 hours after the 5Fu pump was removed.
Cheryl

tsmith

Re: neulasta

Postby tsmith » Mon Feb 27, 2012 11:23 am

fishingwv wrote:I had neulasta 2 years ago and I have tried to find anyone else with long term bone pain. My bones have not been right since. I am in pain all the time. My cancer doctor just blows it off. My bones were never like this until I had 4 injections of neulasta. Just wondering if anyone else felt this way.

"i had neulasta with my chemo treatments (ovarian cancer). i had 6 cycles and 6 shots of neulasta. i have been off chemo and neulasta for 2 yrs and i continue to have the side effects of neulasta and im sure some chemo. my bones ache, i have weak joints, my nerves feel like they slowly grow back in different areas at different times, all my previous injuries before chemo hurt tremendously since my ordeal with the chemo and neulasta, i have been put on sugar pills, blood pressure pills, heartburn pills, and fish oil for the cholesterol, i have major issues with my feet and ankles. the main reason im writing this too you is because when i was put on the fish oil, i seen a great deal of difference with the bone aching issues. its not a 100% change but it is tolerable now. im still learning on the foods to eat to help me out with the other issues BUT i wish everyone would understand that going thru this issue is a lot worse than it is. for me, i have no energy to do anything and like your doctor things can just be an "im not sure". im tired of being put on other meds. before chemo i was healthier, able to get around and do things. i am 37yrs old and walk, get up out of chairs and my medicines are just like my 62 yrold mother. i played tennis alll summer long before. now i cant even hit the ball a few times. chemo has destroyed my body but i try my hardest to get back to normal which in reality may never happen but at least i have my life. i did go back to school soon after my chemo treatments ended and i graduate in may 2012. i have been on the deans list for all semesters, i am in phi theta kappa, chi alpha episilon, and national technical honor society. i have GOD to thanks for all of this. the good, the bad, and the ugly. i havent given up and i try everyday to pursue healing. try the fish oil, after you ask your doc, maybe it could help somewhat.

Toby57
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Re: Long term bad side effects of neulasta?

Postby Toby57 » Mon Feb 27, 2012 1:42 pm

I was given Nuelasta two days after finishing my chemo cycle. They did not give me any injections if the blood count met the minimum., but if I remember, I was given the option to take it on a regular basis to avoid delay of chemo treatments, but I declined the offer and asked to be given only when needed. I received the injection at round 10 of my Folfox treatment, the chemo was delayed a couple of times, but was told not to worry because studies have shown that 9 rounds is good enough, and there might be a change of the number of treatments from 12 to 9 in the future.
54/ Father of 4 . Married to a loving wife
Dx cc Oct.2010/ colon resection,40cm of colon removed.
Stage 3B , 4/37 nodes.
T3N2A, kras Wild
Completed 12x Folfox , June 2011.
Clear Scans June & Dec, 2011, CEA normal.
Live , give , and forgive.

Hodgkins27

Re: Long term bad side effects of neulasta?

Postby Hodgkins27 » Fri Aug 03, 2012 8:37 pm

I took four rounds of neulasta almost a year ago. I experienced severe bone pain throughout my whole body for 3-4 days. The pain in my lower back/tailbone has never gone away. My oncologist blows it off when I ask about it. I have seen 2 spine specialist & a neurologist who did nerve testing and no one can find any problems related to this back pain. I am not saying it was not worth it to take the neulasta but I was beginning to think I was crazy. I am glad to hear I am not the only one and I would like someone to reply if you have a solution to our problem.

vickitwo
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Re: Long term bad side effects of neulasta?

Postby vickitwo » Sun Aug 05, 2012 6:25 pm

missjv wrote:docs love the shot since it is anywhere from $4000.00-$6000.00 a pop of course they will continue to give it even when it is not necessary. i know there are people who really need the boost but alot of others are getting it unnecessarily anyone on those shots needs to ask why especially if they do not have low counts and are just given it auntomatically before or after chemo i would question it.

missjv

My husband is getting Neulasta the day after each treatment. His oncologist does not make a penny off of it. He gets the shot at the hospital. I believe that the oncologist is acting in my husband's best interest based on his training, expertise and experience. I trust him fully. I think portraying all doctors as "greedy" is unfair. Our oncologist has gone above and beyond the call of duty in our behalf.
Vicki

DH Dx 1/2012 @ age 52
stage IV CC
transverse colon,omentum, cecum,liver,lungs,L5
9 rounds of Folfox, Avastin,
5FU/Leucovorin/Avastin
radiation tx to L5 and hips
Folfiri/Zaltrap
12/13/13 Folfox/Avastin
1/4/2014 passed away @ Hospice House- age 54

nicola smith
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Re: Long term bad side effects of neulasta?

Postby nicola smith » Mon Aug 06, 2012 8:10 am

i had neulasta for my last 5 (or 7?) treatments. I had no side effects at the time (bone pain etc.) and have had no long-term effects. I am pleased that neulasta kept me on a regular infusion schedule.
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

lulu
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Re: neulasta

Postby lulu » Fri Mar 28, 2014 2:08 pm

lynng wrote:
fishingwv wrote:I had neulasta 2 years ago and I have tried to find anyone else with long term bone pain. My bones have not been right since. I am in pain all the time. My cancer doctor just blows it off. My bones were never like this until I had 4 injections of neulasta. Just wondering if anyone else felt this way.

I had neulasta last year, 12 shots. I had terrible bone pain for the entire time I had treatments. My joints hurt terribly for 3 days after each shot. I finished my treatment in October and have terrible pain in my hips which no one can explain. I have told my oncologist, who says he has never heard of this problem from the shots, and a rheumatologist, who does not know what the problem is. I have been looking to see if I could find anyone else that has had Neulasta and has the problem. Are your bones still bothering you?


"I too am having bone pain since my last Neulasta shot shot 3 mos. ago. I was looking to see if this was a problem for others. My oncologist said it was probably arthritis. I noticed it had been years since the other comments about this, so was wondering if the bone pain stopped?"


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