Rituxan maintenance

[newerguy]

Finished up six months of Rituxan-Bendamustine for follicular NHL, PET scan at halfway point was clear, have another PET in a week for final results. Anyone use Rituxan maintenance every other month for two years? Something I am considering if oncologist agrees, seems to be controversial these days. I am 73 and would like not to have to be treated again.

[Andilynn]

Hello,I’m glad your treatment is completed and that your scan looks clear.

I had two years of Rituxan maintenance following four weekly infusions for splenic marginal zone lymphoma. Maintenance is something to discuss with your oncologist to determine the benefits vs. the risks. I developed secondary hypogammaglobulinemia from all the Rituxan. My immune levels are permanently low and I’m at risk for infections constantly. In retrospect, I would have not done maintenance, but would retreat the lymphoma when it returned. Mine is a slow growing, incurable, but treatable type. I wish you good luck with whatever you decide.

[newerguy in reply to Andilynn]

Thanks very much for your reply it is the sort of information I wanted to hear. I should have mentioned that my NHL is follicular type 3A with a KI 67 of 50%. No bone marrow or organ involvement so far. I am waiting to see how that final PET scan comes out. Some of what I have read is that folks who achieve complete remission do not necessarily benefit from maintenance therapy. Many thanks again.

[Russ70]

Hi,

I had Follicular NHL. Only had a PET scan at the end of my treatment and I'm in complete remission. I've had a year of maintenance shots (every 3 months) and I feel great tbh. I took them just to make sure it stayed away/

[newerguy in reply to Russ70]

Thanks for that reply. I admit I am rather leaning toward maintenance, but really want to hear how this has worked for others. Most docs all say that it doesn't lead to a longer overall survival, but they say that for everything. When I wanted to be treated initially, I was told that also, but saw no reason to just sit and watch it grow even slowly. Frankly at my age if I could stay in remission till the end and not have to deal with this again, it would be all I could ask.

[Russ70 in reply to newerguy]

I am 51, so I would take that into consideration too. My doctor said, as I am on the younger scale (51, I'll take that at being called younger haha), the maintenance would not cause any issues. It's ultimately up to you and what you feel comfortable with. Good luck with your decision and your final scan.

[newerguy in reply to Russ70]

Thanks for that, how were the side effects from the Rituxan alone? I had it with Bendamustine and between the two they were tolerable although I did have some rapid heartbeat and sort of have to watch caffeine intake now it seems.

[Russ70 in reply to newerguy]

I had RCHOP (Rituximab + Cyclophospha­mide + Doxorubicin + Vincristine + Prednisone) for my chemo treatment, so sounds a bit different than yours. The maintenance for Rituximab (I believe that's just another name for Rituxan from googling) is a shot in my belly. Takes about 5 minutes. There are a couple of drugs they give before it, I believe to nullify the affects. The only really side effect I have had was tiredness on the day of the jab, but I think that's more to do with the pain killers they give before hand. I have a lump in my belly for 3-5 days after it (where the needle goes in), but that goes back to normal after that.

[newerguy in reply to Russ70]

I was told that Benda was well tolerated by "older" patients and was as affective which followed what I read. I suspect it was somewhat easier than RCHOP. In any case with the pretreatment protocol it was tolerable, and I would do it again. My concern with maintenance as mentioned would be immune levels not coming back after. Thanks so much.

[Russ70 in reply to newerguy]

I found RCHOP bearable for the first 4 rounds, but the last 2 were quite hard, as it has basically taken over your body by that time

[BerkshireBear]

I also did RCHOP about 7 years ago for LargeCell B and Follicular. Followed by Rituxan maintenance for a while. I seem to remain in remission from both. But as my doctor says: everyone is different, and cancer is sneaky. So go with what you and he feel is best for your situation.

[Russ70 in reply to BerkshireBear]

Yep it depends on so many different factors.

[newerguy]

I guess the unknown is what those factors are and how they affect the length of remission. Looking at the studies that were done for maintenance some years ago the typical results showed an increase in length of remission not OS. However, some studies did mention that had the volunteers been followed longer an OS increase may have been shown. As I mentioned given my age that is not my primary concern at this point. I have also read that if you have a CR in last scans some feel that maintenance is not really necessary. None of this has really been well substantiated. To a degree this is a serious illness that requires you to do your own research and make choices that seem to often offer little benefit from one to another. Extremely frustrating. Am I the only patient who feels this way?!

[BLP1211 in reply to newerguy]

Agree.

[Steelgate]

Hello newer guy. At 55,I was diagnosed with stage 3 follicular in 2016 w a 10cm node in my mesentery. I had BR for 6 months, very tolerable, which shrunk the cancer into remission, with two years of rituxan maintenance. oh, my oncologist now says that later studies are showing that maintenance is not all that effective but your mileage may vary with your situation. I was cancer free for three years that have had a relapse starting in 2020.

In 2021 I started a duel bio protocol with Lenalidomide and obinutuzumab, which was only 50% successful with the same mesentery tumor.

Currently I'm in the middle of RCHOP TREATMENT, which is a full-bore chemo treatment with all the side effects but my mid treatment pet scan shows that it's being very effective. I've had mini biopsies with only follicular showing in the study but two doctors that I'm visiting both sense that it's a double hit type of lymphoma so that's why they are no suggesting r-chop with a possibility of radiation.

My advice to you is to take the least lethal treatment first with BR and then if not successful, the Bio protocols I mentioned above. Get second opinions, this is your life and you own your health. The nccn shows the most recent protocols and there's much progress being made in this field. Bottom line there's hope. My MD Anderson doctor said that if there's a cancer you could choose, it would be lymphoma because it has a high success rate for survival.

[newerguy in reply to Steelgate]

Thank you for your suggestions. As I did have 6 mo. of BR treatment and a complete metabolic response at the halfway point as indicated by the PET scan, I am anxious for the end of treatment PET that I will have next week. Given my age soon to be 74, it would be nice not to have to go through chemo again, hence my interest in maintenance to perhaps put off a reoccurrence of this. At this point, I think it is about buying time with a decent quality of life. I suspect I may want to get a second opinion regarding maintenance from OSU as they have a well-regarded cancer treatment facility there. I hope your treatment continues to go well.

[newerguy]

I did have my end of chemo PET scan last week which was clear just as the second mid chemo scan was. Discussed all this with oncologist yesterday and decided given my age 74, and 3a type we might want to do Rituxan maintenance every other month for two years to keep the remission going as long as we can. So will begin in February and see how things go. I appreciate all the comments various folks provided, thanks so much.