maintenance

newoldguy

Male, 73 years old Non Hodgkin's follicular lymphoma, diagnosed in June. Stage 3, 3a, no bone marrow involvement, no extra nodal involvement, nodes above and below the diaphragm enlarged, nothing larger than 3 cm. Five treatments of Rituxan/Bendumastine, generally well tolerated, sixth and final coming up. PET scan about half way through treatment was totally clear, nothing glowing or enlarged, molecular total remission etc. Typical symptoms, some fatigue, some shortness of breath, but manage to still walk 30 miles a week. Reading about two year every other month Rituxan maintenance pro's and con's. My oncologist would probably treat with maintenance, but mentioned the down side, etc. lack of OS improvement. I read pros and cons to this but would consider it and am looking for opinions and will likely get a second consultation from another major cancer center here in town. I am almost 74 and if I can stay in remission for some time and not have to deal with treatment again it would make me very happy. Anyone going through this? Thoughts?

po18guy

Sorry to hear of your diagnosis and the current dilemma. Not yet in the same situation, but there is a fairly recent change of perspective regarding treatment vs. palliative care. Statistics, using breast cancer as an example, tend to reveal a very close overall survival between someone who chooses palliative care at diagnosis, and one who undergoes standard treatment. Controlling symptoms can be far less damaging to the body than full-on anti-cancer treatment. As well, the palliative person stands a far better chance of holding onto acceptable health much longer. Still, we cannot deny the fact that both are downward curves, one being flatter for longer than the other. The first tapers more quickly at the end, even if both share the same end point.

A very tough call, as no one on earth can state which is "better." Taking one course may eliminate the other, and no matter which you choose, there is no way of knowing if that was the optimal choice. For this reason (and many others) cancer patients may tend to feel alone. That is not strictly the case, but it is the sense one gets. It calls for substantial pondering - even prayer if you are so inclined.

newoldguy

Sorry, you are mistaken. Rituxan in all circumstances is not considered "palliative care". It is a CD20 monoclonal antibody that is used as a first line treatment often with chemotherapy agents to treat follicular lymphoma and several other blood cancers. It has also been used by itself or along with newer CD20 antibodies as a maintenance drug to prolong remissions or as second line therapy to treat relapsed lymphoma if needed. Most treatments in follicular lymphoma and many other blood cancers are not curative but result in remissions which can be achieved for decades in some patients. The PRIMA study and several others demonstrated that maintenance therapy can continue remissions for very long time. As I approach 74 I find my goal to be a long enough remission that I might not require second line treatment.

ShadyGuy

Correct. I had 36 infusions of rituxan over the years and credit it with saving my life. I think palliative care and maintenance are not the same thing in my mind regardless of similar OS. It has been 10 mostly good years. And in my opinion it extended my life. I seriously doubt I would have lived this long without it. There are definitely side effects but they are mostly minor - leg pain in my case. Have fun. We all die eventually. Time is all we have. Put it to good use.

newoldguy

Thanks for your comments Shady. From what I have been reading there is controversy over long term use of Rituxan causing infections, etc. Generally, two years, every other month or similar supposedly provides good long-term remission in many patients and that is what I am considering. Did you find your oncologists cooperative in prescribing such use? I have my sixth and initial final treatment coming up and have found minimal side effects and my feeling is that those affects may be caused more by the Bendeka than the Rituxan. Ten more reasonably healthy years would be quite rewarding at this point.

ShadyGuy

My oncologist loved Rituxan. It worked well on my stage IV FNHL and I was NED for almost 4 years after completing maintenance before relapse. It worked for me. In the 10 years since diagnosis, even with additional chemo, life has been good. After chemo in 2018 I was started on Rituxan maintenance again. This time I went to Duke for a third opinion. Duke recommended no more R at that time. I stopped it and go in January for a scan and full workup. Time will tell if stopping was a good decision.

newoldguy

https://csn.cancer.org/discussion/comment/1691045#Comment_1691045

Thanks for your comments. It would appear that after my sixth Rituxan/Bendamustine treatment next week and probably another PET scan I will have to make a decision about maintenance. It would be nice not to have to deal with a relapse of this in the time I have left. May I ask how old you are?

duckhead

Hi newoldguy, I read your original post from a few months ago with a lot of interest. I am wondering if you elected the maintenance or not and if so, was it Rituxan? And either way, your reasoning behind it?

I am about to undergo my 6th and final (scheduled) Rituxan/Bendamustine chemo next week and eagerly await a scan about 6 weeks or so from now (I did not have a mid course scan). I am 60 and was diagnosed with grade 1-2 stage 4 (bone marrow involvement) follicular lymphoma about 6 months ago.

I anticipate an upcoming discussion with my oncologist about the maintenance regimen. Without knowing more, and given the pros and cons, I am leaning toward Rituxan maintenance as I would like to prolong or extend my remission (assuming and hoping I will be in remission which I will know in about 6 weeks from now). Just wondering how you reached your decision as far as maintenance goes.

And Shadyguy or anybody else, please feel free to chime in.

Thank you in advance for any insight on this subject.

newoldguy

Duckhead, I did opt for maintenance Rituxan and had my second infusion about two weeks ago. My oncologist felt also that it was a reasonable direction given my age and that I had good results from the B+D regimen. Since I pushed him to go into first line treatment when I could have waited, he figured that would be the direction I would want to go anyway. My last PET scan in January showed a complete molecular remission as did the mid-course scan. I am surprised that they did not do a mid-course scan for you also. Just as a side to this, I had some nodes in my neck that had become bothersome and could be felt and we noticed that after the second treatment of B+D they had pretty well gone away so we knew something was happening.

By the way the side effects from Rituxan alone are not particularly bothersome, perhaps some aches and such and maybe some fatigue which I have anyway but not much else.

I made my decision after reading everything I could find about R maintenance and some feedback I got here. There are plenty of articles on the web, NIH, ASH, Lancet, Oncology etc. Just about all of them say that maintenance will lengthen the remission and have data to support that. OS is another story, most of them do not find a benefit to OS, but some do. One study done by the VA specifically mentions improved OS with maintenance and states that oncologists should not tell patients that OS is not improved. Incidentally my oncologist also said OS would not be improved, who do you want to believe? I really found the con side of the argument to be a bit weak. I treated this right from the beginning and jumped into maintenance, will I live any longer? Who knows, but I am going to give it the best fight I can with what is available. If you opt for it, follow good hygiene and covid prevention practices, I was also given a double injection of Evusheld, the anti-covid monoclonal last week per the oncologist.

Hoping your scan is clear, keep us posted.

duckhead

Thank you so much for the response and the detailed reasoning, newoldguy.

My bulky mass and enlarged lymph nodes decreased significantly or went away after my second chemo so maybe the reason why my oncologist decided not to do a mid course scan. I just know from the notes all along that I am responding well to treatment.

I also had the Evusheld shots very recently. Will be talking to my oncologist about the maintenance regimen as I believe it does more good than harm even if it does not appear to improve OS according to most studies as you stated. Not all oncologists are receptive to continuing the Rituximab maintenance following chemo treatment. I don’t know where my oncologist stands on this as we haven’t talked about this up to this point.

Congratulations on the remission and getting the chemo behind you. I keep my fingers crossed I will go into remission ( and if so, for a long time) and have the success that you are having. I will keep you posted. Thank you very much again for responding and sharing your insight. It is very much appreciated.

newoldguy

I brought this up with my oncologist prior to the last couple of chemo treatments and he was rather non-committal. I think he wanted to see how the last scan looked prior to getting into the topic, perhaps not wanting to get ahead of the situation. In any case when we chatted to discuss the PET outcome, he agreed that it would be a reasonable course to follow.

Given my age now of 74, this is a situation of buying time and if I could live the rest of my life without having to deal with chemo again, I would be quite happy.