Hi all
I Was diagnosed with MCL back in August 2024 which was picked up from a biopsy taken from a bowel polyp. I had no symptoms so a bit of a shock.
My local hospital was very poor in not only telling me what type of lymphoma I had but also referring me to Haematology. I had to wait 8 weeks to get a telephone appointment then another 3 weeks to have a face to face with an Haematology Consultant. It was during this consultation just before Christmas last year that I was told I had MCL.
Fortunately I was referred to the Macmillan cancer centre london and within 2 weeks of referral I commenced chemoimmunotherapy therapy, R-BAC. The consultant was horrified had taken so long to be seen, I had gone from stage 3 to stage 4 from the time I was diagnosed to the time I started care at the UCLH. I found the Macmillan cancer centre at UCLH absolutely wonderful in every way, has anyone else on here been treated at the UCLH?
Fortunately the 6 cycles of R-BAC chemoimmunotherapy, which was a tough journey, worked and I have now been in clinical remission for 7 months. I also have the TP53 mutated gene which apparently can make the MCL more aggressive. Has anyone else here got the TP53 mutated gene? has it caused the MCL to relapse quickly?
I'm having 3 monthly check ups which I find comforting rather than a worry.
Several late side effects from the R-BAC the worst being a rash which has now changed to eczema, didn't have it before chemo, and dandruff, which I've never had before either.
Well that's enough of my ramblings, I feel better for getting in touch and downloading my thoughts.
Have a great Christmas everyone.
Graham
