Long term bad side effects of neulasta?

Please feel free to read, share your thoughts, your stories and connect with others!
CureCRC
Posts: 176
Joined: Tue Jul 22, 2008 9:21 pm

Re: Long term bad side effects of neulasta?

Postby CureCRC » Mon Jul 28, 2008 11:49 am

After 8 rounds of Folfox6, I needed neupogen shots to keep WBC in line....No side effects here 5 months later...

dx 3/07 stage 3 rectal cancer
28 days 5FU/radiation
LAR with TME and lymph nodes removed
Temp loop ileostomy July 2007
downstaged > stage 2
24 weeks Folfox 6 completed 3/08
takedown 5/08

User avatar
justsing
Posts: 1623
Joined: Sat May 10, 2008 2:55 pm
Location: Pittsburgh, PA
Contact:

Re: Long term bad side effects of neulasta?

Postby justsing » Mon Jul 28, 2008 12:35 pm

I was borderline a few times on my absolute neutrophils, but didn't ever have to withhold treatment. My onc really doesn't like to use the drugs unless you're in real trouble, and then only sporadically. He prefers to wait a week.

He was equally conservative with Aranesp for RBC counts. He gave me an infusion of Infed -- iron -- on one of my off weeks and that was enough to keep me in the game for the remaining treatments.

I only had to do 4, and he said folks didn't usually get into real trouble until they got past 6 treatments. So he was not liking that I was already having issues. So I would probably have been looking at dose reductions if I'd needed more chemo.
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

User avatar
sumit22
Posts: 213
Joined: Fri Dec 14, 2007 10:40 am
Location: Chicago

Re: Long term bad side effects of neulasta?

Postby sumit22 » Mon Jul 28, 2008 1:15 pm

My wife had one nuelasta shot and it practically paralyzed her for 2 days. They then switched to neupogen and the ache and pain from those shots was sometimes worse than the chemo itself. She hated getting 4-5 shots every 2 weeks and she said it burned like a bee sting when she got them. This ended in April and she hasnt complained about bone pain since then. If her counts ever get low again, I would actually ask the oncologist about delaying treatment OR only doing 1 nuepogen shot(just enough to get her number up). The shots turned a 5 day cycle of discomfort from the chemo into a 8 day cycle of discomfort.

Learning from some of you posters, looks like simply delaying treatment a few days can be an alternative. Of course, only if the oncologist agrees.

missjv
Posts: 1416
Joined: Tue Sep 12, 2006 10:38 am
Location: FLORIDA

Re: Long term bad side effects of neulasta?

Postby missjv » Mon Jul 28, 2008 2:07 pm

DELAYING TREATMENT FOR A WEEK OR SO WILL NOT MAKE A DIFFERENCE IN THE TREATMENT JUST SCHEDULING. I THINK AND THIS IS MY PERSONAL OPINION THAT YOUR BODY SHOULD TRY TO BUILD ITSELF BACK UP INSTEAD OF SOME STUPID $4000.00 SHOT. THATS JUST ME OTHERS MAY DISAGREE AND THAT IS FINE BUT THE WAY I SEE IT YOUR BODY IS REACTING TO THE CHEMO THE WAY IT SHOULD BE AND I DON'T SEE WHAT GOOD EFFECTS COME FROM A QUICK FIX ME SHOT.

MISSJV

time67

Re: Long term bad side effects of neulasta?

Postby time67 » Mon Jul 28, 2008 2:41 pm

Ok I get Neulasta after every disconnect...I've had six shots now. Didn't know to be worried about this!? They didn't ask me, they just give it and I figured it was neccesary. Now I'm worried! They do hurt and they make me feel ill for two days-aches all over! But I've never had aproblem with my blood count.

User avatar
betsydoglover
Posts: 913
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Long term bad side effects of neulasta?

Postby betsydoglover » Mon Jul 28, 2008 3:21 pm

Hi all -

All this Neulasta discussion is interesting.

I think there are a couple of points worth mentioning:

1) It is NOT a given that white counts (or red) will drop due to chemo. My CBC was normal throughout chemo. I'll grant that low blood counts are common, but not guaranteed, and I question using a treatment like this without any actual clinical signs.

2) My oncologist is very annoyed by the TV ads that imply WBC/RBC/platelet stimulators should be given to "get ready for chemo". These drugs should really only be used - in my humble opinion - when clinical signs indicate their necessity. It is not a surprise that they could have long term, negative, side effects. It's worth the risk if you have clinical signs indicating that you need them, but really not (in my opinion) if you don't.

Don't want to upset anyone. I have no personal experience with these drugs - just think they should only be used when the need is clear - not just cuz the need might arise.

Betsy
diagnosed Stage IV (liver met) 5/05
Colon resection 6/05
6 cycles of Xeloda/oxaliplatin/Avastin
NED since Oct. 2005
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

Magnolia
Posts: 1514
Joined: Fri Jul 14, 2006 2:38 pm
Location: Virginia

Re: Long term bad side effects of neulasta?

Postby Magnolia » Mon Jul 28, 2008 4:40 pm

The one time my counts dropped significantly, my doc delayed my treatment and they did not come up on their own. After holding the treatment a second week, he decided to use the Neulasta. I think it was wise at that point. He never used it for minor drops or transient drops. I'm glad he took that approach.
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.

User avatar
justsing
Posts: 1623
Joined: Sat May 10, 2008 2:55 pm
Location: Pittsburgh, PA
Contact:

Re: Long term bad side effects of neulasta?

Postby justsing » Mon Jul 28, 2008 5:20 pm

So, I'm unclear.
Are there people out there who are given Neulasta after every treatment as a routine, even if their counts are fine?
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

Suze
Posts: 310
Joined: Sat Jan 05, 2008 3:12 pm
Location: Portland, Oregon

Re: Long term bad side effects of neulasta?

Postby Suze » Mon Jul 28, 2008 11:41 pm

I had no idea there was so much variation about neupogen. I kept having to skip chemo due to low blood counts so my onc put me on neupogen. She said that if the chemo were only for palliative treatment, it wouldn't matter, but since we were going for the cure, I needed chemo on a regular basis. I start the day after disconnect, and it continues 8 or 9 days. The pharmacists stay one top of it and change the dose each time so my levels stay high but not too high. I haven't had to skip treatment since and fortunately i have had no bone pain. I assume I will get neupogen as long as I get chemo. Susan
Dx 5/07 Stage IV 59 y/o
6 mos Folfox, Avas., erb.
Surg. for colon, liver mets 1/08
Folfox & Avas. 2/08-8/08
Liver met 10/09, Iri 11/09 - 7/10
SBRT 4/10, 12/10
30-40 lung mets 4/11
Irin./erbitux 5/11-8/11
xeloda/avastin 8/11-2/12
xeloda/erb 2/12/-4/12

janey
Posts: 221
Joined: Tue Mar 04, 2008 10:18 am
Facebook Username: jane canty
Location: South of France

Re: Long term bad side effects of neulasta?

Postby janey » Tue Jul 29, 2008 5:46 am

I had to have the shots before each chemo session as my white blood cells and platelets were dangerously low, making it impossible to have chemo.Each chemo session was delayed for 2/3 weeks They were always given after a blood test, I would have approx 6 shots before each session. They hurt like hell, had to freeze my leg before hand with a tub of icecream. Afterwards for approx 1 week I would have spasms in my spinal cord which were so painfull, making it impossible to sleep. here the product is called GRANOCYTE.
Don,t know if I have any side effects from them now, have extremely painfull knees, strangely enough, back ache but I,ve always had back ache.
Janey
Dx stage 3b colon cancer Mar 07
3/14 lymph nodes cancerous. Diverticulitus.
Surgery for left colectomy Apr 4th 07(opened up braline to bikiniline)
Chemo,Folfox May 07, 5 sessions severe reaction to Oxalyplatin so changed to Xeloda, Finished end Nov 07.

User avatar
Joanne 814
Posts: 871
Joined: Tue Jun 24, 2008 4:56 pm
Facebook Username: Joanne Flynn Hoerrner
Location: Farmington, CT

Re: Long term bad side effects of neulasta?

Postby Joanne 814 » Tue Jul 29, 2008 6:22 am

I take neulasta every other week, when disconnected from 5FU, the next day. my husband gives it to me to save me an extra trip to the Dr. I was told that due to it relating to bone marrow, your long bones might hurt the next day. I am usually wiped out that day from coming off of treatment, but my legs did hurt alot the first 7 cycles, now I am used to it, and its not so bad, when using Tylenol with it. To me it usually only hurts tyhe next day.


I did not know of any problems with it, and my counts have been fine, infact, thats about the only blood count that is ok!!!


ONWARD!!

Joanne
Age: 51
Dx: Nov 07 @ age 43
Stage IIIC, RCa
Colon Resection: Nov 07, 4 of 27 LN
Chemo/Radiation: 28 treatments w/constant 5FU (Jan-Feb 08)
Chemo: Folfox, 12 cycles (Mar-Aug 08) DONE 8-8-08
CT Scan 1-09 NED

missjv
Posts: 1416
Joined: Tue Sep 12, 2006 10:38 am
Location: FLORIDA

Re: Long term bad side effects of neulasta?

Postby missjv » Tue Jul 29, 2008 8:02 am

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

Magnolia
Posts: 1514
Joined: Fri Jul 14, 2006 2:38 pm
Location: Virginia

Re: Long term bad side effects of neulasta?

Postby Magnolia » Tue Jul 29, 2008 9:09 am

Justsing, Yes, there are people who are getting it with every treatment, regardless of counts. The idea is to prevent a drop in counts. I don't personally like this. No drug is risk free, and this one is certianly not COST free. As we're seeing, there's plenty of reason to use it when it's needed, but, without second guessing the folks with the medical degrees, it's worth a conversation if a savvy patient wants to be a bit more conservative. I think a doctor should be able to justify it's routine use if he or she thinks it should be used that way. If any given patient feels comfortable with their doctor's explaination of why it's being used, fine. I wouldn't take a treatment away from a patient without solid proof that it's harmful or unnecessary, and I don't have that at this point. Most of the time I'm on the other end of the battle, trying to get insurance companies to cover treatments that THEY think are unnecessary when docs and patients think they will help. This is the opposite. Carriers WILL cover it, but it may not be helpful, and could be harmful in excess.
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.

Joy
Posts: 460
Joined: Wed Apr 12, 2006 6:33 pm
Location: Ontario, Canada

Re: Long term bad side effects of neulasta?

Postby Joy » Tue Jul 29, 2008 9:45 am

I went through treatment without Neulasta. There were 2 occasions where I was delayed a week because of low blood counts. The Canadian health plan is very "conservative" in the use of these drugs. In this instance I think that this was a "good thing".

Joy
Stage III rectal 2 nodes
LAR jan 2006
NED
Joy
Stage III rectal cancer 2 nodes out of 19
LAR January 4th 2006
2 rounds of FOLFOX
28 continuous radiation with continuous 5FU
6 rounds of FOLFOX
NED

User avatar
suzieh
Posts: 150
Joined: Fri May 05, 2006 2:03 pm
Location: Alpharetta, GA

Re: Long term bad side effects of neulasta?

Postby suzieh » Tue Jul 29, 2008 5:56 pm

I too am out 2 1/2 years from Neulasta and my Left Femur and sometimes pelvis (Which are the two areas that hurt sooooo bad after the injections) still give me this crazy pain every once in a while. I always just shrug my shoulders and say a little ache here and there is all worth seeing my 3 kids growing up. And I just Turned 40 HOOOOORRRAAAYYY.
Suzie, RN
Stage 3 CC @ 37 yo
NED since OCT. 2005
Colondar model February 2008
http://livingbeyondcoloncancer.blogspot.com/


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Al2000, Google [Bot], Murb123 and 51 guests