I was diagnosed with stage 2 MCL January 23 and was about to start Chemoimmunotherapy (Nordic) when my team changed their mind and decided Watch & Wait. I still have not started any treatment and have had over a year of feeling ok while the cancer progresses to Stage 4 - conter intuitivel but my dr and my research say treatment is as effective at stage 4 as long as organs not affected so I have had a bonus of over a year feeling ok but difficult to explain to people ( Ann’s sometimes yourself) that your cancer has not been treated and you waiting until it gets worse!
Now at a point where I need to start and hope to go on a new trial for a non chemo therapy ( a new targeted therapy) or if not the Nordic.
Hi MJF and a warm welcome to this corner of the Community although I am sorry to see you joining us I am Mike and I help out around our various Lymphoma groups.
I don’t have Mantle cell lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
This group had been slow lately but let’s see who is looking in.
Over my 24+ years I have had a lot of treatment (See my story) but I am 8.5 years out from my last treatment and turned 68 last Nov and am doing great.
All the links I put up are all taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information about all things Lymphoma from what is Lymphoma. symptoms, types of Lymphoma treatments and many support platforms.
They run regular Support Platforms both for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where both patients and carers/family can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
Always around to help more or just to chat
