Macmillan’s website will undergo planned maintenance from Monday 1 Dec at 10:30pm to Tuesday 2 Dec at 9am. During this time, the Community will be partly unavailable. Members won’t be able to log in or join, but you will still be able to read posts and discussions.
Macmillan’s website will undergo planned maintenance from Monday 1 Dec at 10:30pm to Tuesday 2 Dec at 9am. During this time, the Community will be partly unavailable. Members won’t be able to log in or join, but you will still be able to read posts and discussions.
Hello, I'm a new member of the community and would be interested in people's experiences of Rituximab maintenance therapy for Mantle Cell Lymphoma. I had successful R-Chop chemotherapy in 2021-2022 and achieved full remission. Following that I was put on Rituximab subcutaneous injections every 8 weeks for 2 years. I have recently had treatment number 9, so have 3 more to go. So far, I have responded well to the therapy with no significant side effects other than a couple of days in between treatments when I feel very tired and quite devoid of energy.
However, the last injection came 2 weeks after full knee replacement surgery and, since then, I've not really recovered my energy levels. It has got me wondering if the maintenance therapy is becoming less effective, or is it perhaps only to be expected that knee surgery plus painkillers plus Rituximab is going to temporarily affect my energy.
Hi Hopalong and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Mantle Cells Lymphoma diagnosis.
I am Mike and I help out around our Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is be different I do appreciate the challenges of this journey rather well.
Although I had over 750 hrs of Rituximab, maintenance was not any use to me so I had to go straight to Allo Stem Cell Transplant.
I would suggest that your energy issues is most likely not a sign of the treatment not working.... more an accumulation of effects of the treatments..... people often report this...... but you are recovering from surgery as well.... so I am not that surprised as to how you feel.
I see you have already joined and put a reply to a post in our Mantel Cell LymphomaHodgkin's Lymphoma group...... you may want to also have a look at our General Non Hodgkin's Lymphoma as maintenance is used a lot across the various NHLs.
It's often best to put up your own post in the groups as this tends to get more replies.......... You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title...... you can copy and paste the text from this post into your new post.
I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.
Thank you for getting back to me and for your welcome to the community. I reckon you're right about the cause of my weariness; I really should have learned by now that (a) surgery and the follow-up medication really takes it out of you and (b) I have to accept that I am getting older, so recovery takes a bit longer.
I'll take on board your tip about posting on the General Non-Hodgkin's Lymphoma forum.
Trevor (Hopalong).
Whatever cancer throws your way, we’re right there with you.
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