It’s the 90th day after my daughter having a stemcell transplant to try to cure her blood cancer called sezary syndrome she was in hospital for 4 months and came out a day ago ‘she is not doing well the drs have said she’s got more of her stemcells back than mine what I donated to her which could mean her cancer hasn’t gone we will no by next week hopefully as they took a biopsy on her skin not sure how I’m feeling
Hi , I did reply to your question to Jane in our Ask an Expert and I have been following your posts in the Carers Only group but I am not allowed to post in there so its good that you have found yourself over to our corner of the site.
Sezary Syndrome is in the same T-Cell Lymphoma Family as my Cutaneous T-Cell Skin Lymphoma (CTCL) that I was diagnosed with in 1999. I have had two Allo Stem Cell Transplants with stem cells from my brother.
I am a touch confused when you say about getting more of her cells back than the ones that you had donated...... the conditioning chemo should have killed off all her stem cells before she received your cells....... what type of conditioning did she have?
My first Allo did not work and failed within 6 months so had to go back for a second Allo the following year - you can see my story by hitting my forum name....... Thehighlander
Basically my skin was not clean going into my first Allo and this was the main reason that it did not take.
I had a completely different type of conditioning going into my second Allo and so far I am still in remission so there are further routes to take.
SCT is like a major procedure to put the body through so it does take a long time to recover.
What are her team saying about a way forward in this?.....((hugs))
Hi again, so first thing you need to do is make up a list of questions so that you have a clear understanding where things are at and if the SCT has not worked then what is the next plan.
As you know CTCL is a skin Lymphoma and the reason my first SCT did not work was that the conditioning did not kill off all the cancer cells as my skin still had small tumours ..... so going into my second SCT I had 30 sessions of Radiotherapy to kill all the cancer tumours on my skin then very very strong chemo conditioning to clear my bone marrow before going into SCT.
Lets look for her team to find a positive way forward for her.
