Hi,
My Dad just started maintenance treatment of Rituximab every two months for two years. He is, I am happy to say, in remission after 6 rounds of chemo, which ended 4 months ago. Has anyone else been through maintenance Retuximab? Would be really interested to know your experiences, especially around the effect on your immune system, and how much you were able to do? did you notice a pattern at different stages of the two months, or was it more consistent? he is a keen folk dancer, and we are hoping he won't have to stop his life too much. Thanks for your time x
Hi Hannt and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your dad.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Mantle cell lymphoma but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) …….
Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
I did not have maintenance as I went straight on to have 2 Allo (donor) Stem Cell Transplants (June 2014 then Oct 2015) but let’s see if anyone group members will pick up on your post.
However I did have over 700hrs of Rituximab as part of my 6 cycles of R-EPOCH and on the whole I did well with all my chemo….. x yes fatigue but manageable and yes like many drugs the Ritux will temporarily reduce his immune system……
But we tried to keep as normal a life as possible during all my treatments although keeping clear of crowded inside places was important.
If you are n the UK you may want to also check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms… with their online Grouo having over 5800 members so lots of support.
I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.
They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
