MCL diagnosis just over a year ago. Described as indolent, I'm glad to say. How does that fit with MCL being diagnosed as a high grade lymphoma type?
Had immunotherapy... Ibrutinib and rituximab.
The ibrutinib didn't agree with me and stopped both 6 months ago. Had done a great job though on clearing the MCL and scan was clear.
Now on active monitoring
So... Hasn't bothered me too much yet, except for seeming to have triggered arthritis type symptoms Anyone else had that?
Hi Christine M and we omento this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. Sorry for the delay in replying but I did not het a notification about your post.
I don’t have MCL but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Lymphoma ‘type’ is different I understand the challenges of the journey well.
Each Lymphoma type (there are over 60) brings different challenges so it’s often hard to get someone with the exact same experience.
Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.
I will always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos, webinars….
They run regular Regional Lymphoma Online Support Groups for both patients and Carers and a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
Always around to help more or just to chat
