Connect with others who understand.

sign up log in
About MyLymphomaTeam

Connect with others who understand.

sign up log in
About MyLymphomaTeam
Real members of MyLymphomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Rituxamab Maintenance Therapy - Do Or Don't???

Rituxamab Maintenance Therapy - Do Or Don't???

Hello Group - My name is Pam, 63 year old retired nurse. I just finished 6 months of Bendemustine/Rituxamab (BR) treatment for follicular lymphoma stage 4. The majority of providers are recommending a 2 year - every 2 month infusion of Rituxamab. I've also heard some LLS physicians state they no longer use this protocol due to weakening of the immune system - with COVID and all still active would increase our chances of getting it. Anyone have advise/opinion on this? I personally don't feel… read more

A MyLymphomaTeam Member said:

My research says rituximab maintenance therapy can delay recurrence, but does not increase overall life span.

posted about 1 month ago
A MyLymphomaTeam Member said:

Hi Pam, I had that same cocktail mix for follicular NHL- Stage IV- 6 years ago. My Harvard educated doc from Memorial Sloan Kettering (who is AWESOME) did not have me do ANY infusions or treatment of any kind since the initial chemo/immuno therapy. I would maybe get a second opinion if you can. Personally I even worry about the CT Scan with contrast that I have to have every year now (used to be every 3 months then 6 months and now a year). That said, every cancer is different so it's possible your course of treatment includes the extra infusions. Hard decision for you but do your homework and do what you feel is best for you. Good luck!

posted 15 days ago
A MyLymphomaTeam Member said:

I had stage 3FL and did 6treatments of Bendamustine and Rituxan with a PET that showed full remission. Standard treatment is 2 more years of Rituxan which has been a fantastic drug to prolong reoccurrence until Covid. Yes it does suppress your immune system in the middle of a viral pandemic which is problematic. Advice from my specialist was to do one additional year of Rituxan which was 7 treatments every other month. At that point my body was tired, I had constant mouth sores, I had one systemic infection and I was done being isolated and feeling vulnerable. My oncologist and I agreed it was the right time to end.

I got Covid shots during this time but never developed antibodies until I got Evusheld and a subsequent Covid vaccine. I now have antibodies. If you had your Covid vaccines before taking Rituxan, they probably worked. They can check for antibodies with a spike protein blood test. The current Covid strains aren’t as deadly and Paxlovid is now available for treatment so I would do the Rituxan again if given the choice but not for two years.

posted about 1 month ago
A MyLymphomaTeam Member said:

Pamela,
4 PETS in one year does sound like a lot. I was wondering about xray exposure - with many CTs, MRIs, mammograms, one PET, dental rays and etc in the last 10 months. Do you (does anybody) track that? I paid for my one PET out-of-pocket, it was $1200 at an outside radiology center. Which means it would have been billed at way more in a hospital. I don't think my insurance would go for that many.
Rebecca

posted 15 days ago
A MyLymphomaTeam Member said:

Hi Pam! The scans for me were also super frequent in the first year or two so don't worry too much. In my case (and it sounds like in yours too) the cancer is in my bone marrow and only detectable via pet/ct scans and biopsies. As such we unfortunately have to have a lot of scans. As the years progress you'll have less and less though and my doc is very thoughtful about balancing the need for scans vs the damage from the contrast so I trust her. I always have great blood test results for CBC and CMP and so scans are the only true test for remission. Also, I'm glad you didn't get the Rituximab! At MSKCC a team of docs discuss each patients treatment etc and I truly feel I am in the best possible hands! Best of luck to you! I find out in about 20 minutes if I"m still cancer free after 6 years :)

posted 15 days ago
Already a Member? Log in