I have MDS which is basically bone marrow cancer. Ive had this for 14 years. I was in remission until Feb 2021 when I got Covid. Im now facing a bone marrow transplant at 55. Ive have gene mutations which could lead me to develop Leukemia. Im back on Ciclosporin as an immuno suppressant. Unfortunately it has a really bad effect on my kidneys. Id been told that if I dont have the transplant I may only survive another 5-10 years and that fighting Leukemia would be a lot harder.
However now my kidneys arent doing so well and my local consultant seems to be back peddling regarding the BMT, which I have a date for in Glasgow. im so confused about it all. Every day I feel sick to my stomach thinking about it all.
Has anyone been through this type of transplant? Looking for words of help.
Hi Longwood and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our blood cancer groups.
I don’t have MDS but was diagnosed way back in 1999 with a rare incurable but treatable type of skin NHL Stage 4a and although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.
I am jumping into your post as I have also had two Allo (donor) Stem Cell Transplants (SCT). Consultants often still refer to the old term of Bone Marrow Transplant.
We actually have a dedicated Stem cell transplant group where folks from many blood cancers support each other on the SCT rollercoaster.
Over my time helping out on the community I think we have had one person with MDS go through SCT but I do know a number of others through my local Maggie’s Centre Heamatology Support Group.
I actually had my two Allo SCTs at The Beatson in Glasgow so know the Glasgow team well
You can see my journey by hitting my Community name Thehighlander
Happy to talk more on this thread or in the SCT Group.
