Hi there. I had the most devastating news yesterday that the NHS are unable to commission a 2nd stem cell transplant for me as I relapsed 9 months after the first one. This is despite being well and fit and gaining remission via Gilteritinib. I am at a loss on what to do and have been looking at crowdfunding to pay for one privately but the costs are high. I have looked into potential hospitals abroad but it is a minefield. I am only 57, have 2 daughters and want to live! Can anyone recommend a place to get a private transplant? It has to be from a live donor as my first one was from an umbilical cord.
Hi Angelina6c7643 and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I keep an eye on our various Blood Cancer groups.
I don’t have Acute Myeloid Leukaemia (AML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well……
……. especially as I have had 2 Allograft Stem Cell Transplants using cells from my big brother.
My case is complicated due to having to be treated for 2 rare types of rare T-Cell NHLs at the same time.
My first Allo SCT was in June 2014 (See my story) this was basically seen as a trial as we were using a new-ish conditioning called the Stanford Regime TLI/ATG plan that did not require chemo…… this was primarily aimed at my rare skin NHL….. as they felt that my other aggressive NHL was most likely in remission.
I was told on Christmas Eve 2014 that the graft had failed…. we tried a number of DLIs leading up to this point but the graft just failed……. Merry Christmas.
But my team sent my case out for review including going to see a skin expert in Newcastle and a full case review by Dr Sean Whittaker at St Thomas' London.
So a plan was put in place and I was brought back in and had my second Allo SCT in Oct 2015 using my brothers cells again and FluMelAlem30 as my conditioning……. it took a good few years for the graft to take hold…… but it did.
Over the past 10 years I have only heard of one person in the USA who has had 2 Allograft SCTs……. in Myeloma I often see folks have an Autologous SCT first then go on to have an Allo SCT……
Are you in the UK?…… if you are I have not seen any information about being able to get an Allo SCT privately
You may want to contact Leukaemia Care UK who have a Support Line on 08088 010 444 or Anthony Nolan https://www.anthonynolan.org/your-patients-our-support
