Rituximab Maintenance after chemo - your experiences

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.

Hi Hannt, I'm glad  to hear your dad is in remission. I am on Retuximab every 2 months and  I am about halfway through the treatment. I haven't had any problems with my immune system but I do keep away from anyone who has a cough or cold etc. I still do my hobbies eg cycling,  walking and a bit of gardening, but I don't over do it and take a rest if need be. Sometimes I feel tired in the evening so I just have a early night. Having the injections hasn't stopped me going on holiday or just a day out. I hope your dad carries on folk dancing as it can help you feel normal ( if that's the word). I've been diagnosed with mantle cell non hodgkin lymphoma and been in remission for two years. There is a lot of information on the Macmillan site you can look at. I hope this helps a little.

Thanks so much for your reply, and glad to hear you are also in remission. Really helpful to hear how you are able to keep up your hobbies and adapt to the treatment. Sending you all the best xx

Hi Mike, thanks so much for your reply and all the info - so helpful! xx