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 to read that you are looking down the Stem Cell Transplant (SCT) tunnel. Unfortunately this can happen once all the main first line treatments have not done the job.
Yes, you do have to look at how you can get through and out the other end if you have a SCT. We have had a few ‘singles’ in the Stem cell transplant group and they actually did ok.
It’s now all down to the greater good in all this. What are your options? Are there other options?........ for me, Allo SCT was my last roll of the dice as I had a few years put on my countdown clock. My first SCT was a straight forward but the graft did not take the second SCT worked but it was very hard work.
You need to get better information and opinions as this will help you make a clear decision.
You may want to put a post up in the SCT Group as this will open you up to others who had to make that same decisions.
Been off site on holiday so sorry for not getting back to you.... and I am just navigating the new site.
Always around to listen and help as best as I can.
Mike
To be very honest, the way forward will hinge on your overwhelming desire to live yes it sounds harsh, but that was the choice I was given.
Could I have went through the first SCT on my own - most likely yes but big a no for the second one.
I see you have put up a post in the SCT Group so will pick up our conversation over there.
it’s the last day of my wife’s holidays so going out for a few hours to walk the shores of Loch Ness - the benefits staying in Inverness.
