Hello everyone,
I am 49 years old and was diagnosed with stage 4 FL 2 years ago. I had 6 cycles of RCHOP and had a complete response. But at my 18 month PET CT Scan it showed a Deauville score of 5. I was sent for a needle biopsy (as there were no easily accessible nodes to do an excisional biopsy) but there was not enough tissue so it was inconclusive. My consultant says I will be discussed at the next MDT but that it is likely they will recommend high dose chemo with a stem cell transplant. I don't know if this will be an autologous or allogenic one; 2 years ago there was cancer in my bone marrow biopsy so it might be that I will not be able to do an autologous one now.
I would like to know if anybody else has been in this predicament? I do not want a stem cell transplant at all. I am alone and do not have the family support for the recovery period at home after a transplant. I also want a second opinion - hopefully at UCLH or KCLH because they both have a lot of clinical trials. Really I do not want a treatment that means I am so unwell that I cannot look after myself. RCHOP was tough but aside from a few days per cycle, I was fine and even those rough days I could sort myself out (if only just).
What happens when a solo person needs a stem cell transplant and does not have family to look after them?
I would really value any insight people can give.
Thanks,
Theo
Hi again Theo, sorry for not catching up with you.
There is a single man in our local Heamatology Support Group who remarkably has the same rare type of Skin NHL as me and late last year he followed the basic same Allo Stem Cell Transpalnt Route that I had pioneered back in 2014/15 and he is doing great.
The thing is he has no family, stays on a croft (farm) in the back of beyonds in the Highlands and did ok, yes, he had some initial challenges but so far so good.
Mike
