Follicular Lymphoma folks...

"For One Hematologist, No Disease Progressions in Follicular Lymphoma With Rituximab Maintenance"

I had the most interesting conversation with my oncologist today.  I went in for my second to last maintenance rituximab, and when my doctor came by I mentioned how happy I was to almost be done.  He brought up the article above and mentioned that he was considering keeping me on maintenance because of where my tumor presented (abdomen) vice the more common neck or armpit area.  He was concerned about more damage to the kidney when it does come back and while this was a small group, he thought it was worth considering. 

So, I'm obviously curious and am wondering if anyone else has done maintenance longer than the standard two years?  What were the outcomes and were there any side effects?  I tolerate the treatment well, just have a devil of a time getting it into me - takes all day.  Here is the direct link to the article if you are interested:

(http://www.ascopost.com/issues/march-25-2017/for-one-hematologist-no-disease-progressions-in-follicular-lymphoma-with-rituximab-maintenance/)

4 people threw a punch at your cancer.
Thomas, Penny sent you a hug.
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Stefanie, My only beef with Rituxin was that I opened and closed the place down as they had to run it nice and easy with my R-CHOP therapy. I don't know which of the IV cocktails gave me the most side effects, but I think it was the "C-H-O" that caused the neuropathy, hair loss, and feel like hell crud. I don't think it was Rituxin as I was told that was a 'designer drug' that only finds cancer cells and beats the hell out of them, but don't know. Anyhow, the old "more is better" doesn't always apply. They have found with immunotherapy that there is a safe limit in the amount of therapy, and in that case a 5 lb bag was not better than a 3 lb bag, so I would ask a lot of questions. I would be curious if the Rituxin essentially "trains your body's cells" to kick cancer cells out, and at what point do you stop doing that? Did you do R-CHOP, or only Rituxin? I think that makes a difference too. I would guess that how aggressive the cancer was would also determine how aggressive the maintenance would be after you got the all-clear? Well, you going on 2 years, so that's pretty cool, I would have to say. When in doubt, have your Onc quiz the other 4-5 guys/gals in his practice and get a consensus- unless it was like mine that went 3 to 3 vote on yes/no radiation follow-up! Hope you get some good guidance.
MGBY,
John
Stefanie likes this comment
Stefanie, you just answered your own question with these same questions to ask him and see if he has the answers that make sense.
Stefanie likes this comment
I just sent him a very long email with questions! I also ready a bunch of other studies which all conflict. Ah well, will let you all know how it goes!
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I did Bendamustine and Rituxan, aka B+R. So technically when my two years is up I will have actually been on it 2.5 years since it was part of my chemo therapy. I'm definitely wondering about the prolonged exposure. What's it going to do to my immune system as well as - what if I do relapse and need it again? Will it work again? A lot to think about. The sample size in this article is small 30 people. But 100% is hard to ignore. Unless the results are being fudged which unfortunately does happen.
Don't know anything about this, but just want to say how good it is to hear that your oncologist is keeping his thinking cap on.....and how nice it is to read a post from you. My man was faced with a similar decision when it came to radiation folllowing surgery and chemo in the pancreatic cancer context. The jury is out (Europeans don't consider radiation as part of the standard of care; Americans do) and we were going crazy reading articles about response rates, progression-free survival vs. overall survival, etc. Ultimately, he opted for the radiation (mostly because the radiation oncologist was very persuasive, young, and "easy on the eyes" according to my husband). Good luck, whatever you decide! XO Sue💪🏽
Stefanie likes this comment
LOL, Hulk is something else! If that's the criteria I suppose I'm doing it, my Onc is a good looking guy! Good to hear from you as well Susan! Hope you both are doing well!
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Wow... Is could be really great. I wold totally be ok with a lifetime of infusions if it meant I had a long life.
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Hi Stef! The World Health Organization lists rituxin as one of the safest and most effective disease treatments! I guess you would have to weigh this fact out against the other chemo rx's. Take your time and study it. The good thing is that Rituxin had been in use about.....20 years now (?), so it has a history. I personally, would do it. I took what was experimental tx for SLE in 1990-91. Now it's the go-to tx for severe disease. God bless.
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Hi sweetie I hope you feel better.. hugs and love and always prayers Sabina
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Hey Stef!
I think I would do it... But saying that, I had to stop my maintenance after only a few rounds of it due to my counts not coming up. I was devastated to stop maintenance - still am if I overanalyze and think too much about it. But my counts came back up in waves... I will be discussing the article with my oncologist in June. I do think I'd be strongly considering it though if I tolerated it like you do. I'm glad to hear you're still doing well.
Stefanie likes this comment
Hey Jess, funny I was just thinking of you! No decision made yet. My Onc answered the questions I gave him and ultimately said there is probably more than one right answer here. He apparently also wants to be a politician. With the FDA approving Rituxan to be administered subcutaneously now I was kind of leaning toward doing it.
I did also ask what would happen if it came back while I was on Rituxan and he said there were a lot of other treatment options out there.
Did you decide what to do yet? I asked my oncologist about the article and he knew of it. He said that for myself the risk of my white count, that only recently normalized, decreasing again was too great. He didn't want to continue with me because he said it meant if my cancer came back again he wouldn't be able to blast it with the Rituxan. I'm not sure if he would have recommended longer use of it if my counts had been okay though. I hope you're doing well!
Let me know what your Onc says! I'm taking a poll!
Hope you and the family are doing well - we are counting down to summer break here!
Jessica likes this comment
Hi Stefanie
Just wanted to thank you for sharing this. I had 2 years maintenance rituximab and was in remission after initial 6 months rcvp . Lasted 12 months then it came back. Now on rituximab and bendamustine for 6 months (had 2sessions) and initially told would be followed by 2 more years maintenance but now they want to do stem cell. Having seen you post I will be asking their opinion on this. I am uk based on NHS who have been great. Thanks and good luck.
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Vital Info

Posts

February 25, 2015

Maryland

January 23

Cancer Info

Non-Hodgkin Lymphoma

follicular

February 24, 2015

Stage 3

over 6.1

Rituxan

the unknown

Prayers and good wishes

offer to clean some dishes, bring dinner. basically help my husband please.

Johns Hopkins Kimmel Cancer Center

August 5, 2015

Nausea, fatigue, lower back pain, night sweats

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