I started my MCL journey in April 2015
Starting in May I had 4 cycles of ARA-C chemo with rituximab and detramethadone. In November 2015 I had my Autologous SCT with the LEAM conditioning routine. This kept me in remission until January 2022 when it relapsed.
Hi Mantle and 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 MCL but was diagnosed way back in 1999 with a rare, incurable but treatable type of Skin NHL (CTCL) Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.
I am rather sorry to hear that you have relapsed 7 year on from your Auto SCT....... I can totally appreciate this as I relapsed 6 months after my first Allo (donor) SCT that I had back in June 2014....... I went back in Oct 2015 and had my second Allo SCT and so far so good (hit my community name for my story)
There are a number of folks in the group who have had Ibrutinib so lets see if anyone is still looking in but you could also put Ibrutinib into the search tool near the top (hit everywhere) and see all the older posts and as always, you can hit reply and see if the members are still on the site.
You may want to check out Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos but they do run monthly Regional Lymphoma Online Support Groups and a great Lymphoma Buddy Service where people like yourself can be linked up with someone who has walked the same treatment journey.
We do have a dedicated Stem cell transplant group where folks from different blood cancers support each other but there is no one in the exact same position as yourself at the moment in the group but do have a look through the various threads.
Always around to help more or just to chat.
Whatever cancer throws your way, we’re right there with you.
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