Hi I'm Kaf2, I was diagnosed with high grade aggressive mantle cell lymphoma Feb 2016, at 41, I was scared of the chemo but it went well, even after the first days chemo treatment you could visibly see the tumours going. My tumours were on the right and left side of my neck, yes, the first day my face and neck looked remarkably better. I was so amazed, as was everyone else. I had six months of chemo treatment, followed by an auto- graft , which is the good stem cells harvested off yourself. Stored, then put back in me a month later after another course of chemo. In the Nov 2016 i was in remission. Its now June 2023, 7years later, and im still in remission. I wasnt aware of any mantle cell lymphoma group and it would have been good to join back then.
Hi kaf2 and a warm welcome to 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.
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 T-Cell Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well…… especially as I have had 2 Allo (donor) Stem Cell Transplants (SCT) so do appreciate the journey you have had with your Auto SCT and it’s great that you remain in remission.
My second Allo SCT was back in Oct 2015, it was a rough journey but remission was achieved in Sep 2016 and I remain in remission to this day.
I was the same in wishing that I had found these groups many years ago. Always around to help more or just to chat.
PS - we also have a dedicated Stem cell transplant group as well.
