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Has anyone decided not to do Rituxin maintenance?

jerilynn's picture
jerilynn
Posts: 7
Joined: Mar 2003

I just finished radiation and chemo with Rituxin for Non-Hodgkins Lymphoma which presented in my femur and abdomen as well as a large tumor in my groin. My oncologist wants to put me on a maintenance program of Rituxin as well as a bone strengthener for two years, every three months. I am hesitant to do this. Rituxin will lower my immunity even more and I am not sure of the long term benefits. I have read that it may prolong the time before the next battle, but am also reading that it weakens my ability to fight that battle. Thoughts?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1195
Joined: May 2012

Jer,

Rituxan is a common maintenance therapy. It is also one of the least toxic drugs perscribed for lymphoma. I have read where numerous people here are on it for either maintenance or as a first-line therapy. Compared to some of the severely harsh combination therapies that are given, Rituxan by itself is (usuallY) very mild. Some people are allergic, however. If you have already been receiving it for some time with no problems, however, you are obviously not allergic to it.

"Weakening the system" does not jump to mind as one of the side-effects of Rituxan anyway. It does not ordinarily cause any reduction in WBC. I do not know in what sense you believe it will "weaken" you, therefore. The most common side-effect is a flu-like pain and sometimes fever.

I would beg for the drug myself. Bless your decision. I am sure numerous folks will submit, since Rituxan given alone is, as I mentioned, a very common thing.

max

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GKH
Posts: 321
Joined: Jul 2012

I am on Rituxan monotherapy. My last bone marrow biopsy said my B cells were "virtually undetectable". This supposedly leaves me open to some kinds of infection but after 10 mos it has not been a problem. I think the biggest issues are for people with dormant hepatitis, herpesvirus and chicken pox virus. My white count has been consistently low since starting Rituxan. I prepared for this by updating all my vaccinations, including shingles (zoster) in advance.

AustralianSurvivor's picture
AustralianSurvivor
Posts: 3
Joined: Sep 2012

Hi, I did 6 sessions of RCHOP last year and BEAM chemo Oct 2011 with a Bone Marrow transplant. I was found to be in complete remission in Nov.

I have completed Rituxin Jan, April, July and about to go on my Oct treatment soon. I have asked heaps of questions about this treatment and they are calling it a drug (not a chemo) that specifically detect lymphocytes and is not as harmful as you think.

It takes a while to administer (I am in there about 5 hours) but walk out of the treatment room normal and no side effects. Nothing compared to RCHOP and another world from BEAM.

It has been proven to prolong the reoccurrence of a relapse and in some cases prolongs so long that it is almost as good as a cure (Mainly in older sufferers).

I am not sure if it lowers your immune system and if it does it is probably due to it killing lymphocytes I guess, but I also drink red wine so I guess you can say that also is an immune system suppressant being alcohol.

I really do hope you are well and wish you luck and courage in your own journey and hop that mine may help you shed some light.

Paul

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1195
Joined: May 2012

Paul,

Nice to meet you. If we met before, forgive me -- the "chemo fog" thing lingers.

Your response reminded me that the Rituxan bag does take a long time to deliver. I did 12 r-abvd cycles, and the infusion nurse always began with the Rituxan. An infusion (all five drugs)always lasted 8 or more hours. But, well worth it, no doubt.

My oncologist was a cut-to-the-chase, no-nonesense sort of personality, but a brilliant man nonetheless (three areas of board certification, the best schools --Stanford, UCLA, Duke). I asked him about going to the Mall or something one day with my "immune system down" (this was in the middle of my treatment period), and he said:

"Your WBC count is normal. Your immune system is as good as anyone's in the Mall. Go, if you feel like it."

In the big scheme of lymphoma care, Rituxan is apparantly one of the easier treatments out there.

max

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hi Jerilynn, I had non hogkins B cell lymphoma, at first my oncologist was going to put me on maintance Rituxin, then she decided against it. She felt the benefits with B cell were not worth it.... I also had bone involvement ..... it's a tough call Good luck ...Vinny

allmost60's picture
allmost60
Posts: 3173
Joined: Jul 2010

Hi jerilynn,
I had Rituxan in my first line chemo regimen..(CVP-R-6 rounds)...and did just fine. After finishing my chemo in Dec of 2010 my onc started me on the 2 year R maint in February 2011. I'll finish my R maint in Feb 2013(3 rounds left) and so far I have not had any major issues to speak of. I get blood work done every other month and as of date, my counts have always come back good. I was very fortunate throuhout chemo and my maint R in not getting sick even once. No colds, flu, or anything. I get the flu shot every year also. I did extensive research on Rituxan and though it does have some scary side effects attached to it, as per R label literature , I personally have not experienced any. As Max said, there is a bit of acheyness with taking it,(mild flu like symptoms),mild fatigue after each round, etc, but there's absolutely nothing thats not totally do-able.It is in no way similar to first line chemo, thats for sure. If you use common sense precautions...washing hands...keeping away from sick people, etc, I really feel the benefits of Rituxan out weigh the risks. We have quite a few members taking Rituxan for maint, so hopefully they will join in and share their experience. My infusions take about 3 hours to complete, so thats not a huge amount of time to deal with. My first Rituxan with chemo took 7 1/2 to 8 hours to complete, but they do the drip slowly while watching for any re-action...after that, if no bad re-actions, they will slowly increase the drip flow during the infusion. I wish you the best in your decision and hope this information has helped a little. Much love...Sue
(Follicular NHL-stage3-grade2-typeA-Dx 6/10-age 61)

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I have never had any problems with R.Started with R-CVP June 2010. Had 2 year maintenance with last one coming this Friday. You will feel sleepy if you decide to go with the maintenance because of the benedryl,but that is usually worn off by the next day somewhat. Its up to you,but I would not avoid taking it. All medicines can have some side effects The good far out weigh the bad with this one. John

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

I've been on the R maintenance, following Bendamustine/R chemo ended Dec. 2011.

Like many on this board have reported. I have little side effect. There are not problems with blood counts, like there is with chemo. My infusions now with the pre-meds take about 3 hours, once the IV is started. For the blessing of continued remission and prolonging it, I think it is worth taking. Only side effects, as mentioned by others, drowsy from the benedryl on the day of infusion; occasionally mild achy muscles---

I definitely agree the benefits far outweigh the risks; as known today anyway. susan

rclaxb's picture
rclaxb
Posts: 13
Joined: Sep 2010

I had my last maintenance treatment for FNHL Feb. 2012. I am in remission and have a 50/50 chance of going 5 years or longer before more treatments. I really did not have side effects with the drug. I would not hesitate to go on it again, in facts I worried about going off of it but my doctor reassured me.

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