Richard having to have a Bone Marrow Transplant goes from 50% to 80% likelihood

At a meeting with the Prof in Kings yesterday, he reviewed what my Plymouth Consultant and I had decided and fully agreed with going full dose straight away. This was after my bone marrow results had shown the blasts go from 3% to 7%, showing that the MDS had 'progressed' again. (Progressed means gets worse !)

 

We spent a lot of time discussing a possible bone marrow / stem cell transplant, which has to be from an unrelated donor. This will be my decision - but he thinks that the time is nearly on us to make the decision. He said only a handful of people have gone beyond where I am with the Azacitadine, that I have had two years with good quality of life and that even on a higher dose I might not last more that 12 to 24 months on Azacitidine alone.

He has recommended full dose for 7 days at 4 weekly intervals for two tranches, followed by a bone marrow test, and then clinic with Prof on 19th August - probably decision day if a donor has been found

Out of interest the longest anyone has been kept going on Azacitidine is 8 1/2 years and the vice chairman of the UK MDS group (a professor of medicine himself) has been on it for 5 years now. 

Prof Mufti said I was in great shape physically for a transplant, and wholly agreed with expediting possible donors. Statistically there is a basic 38 % chance of me surviving two years from a transplant, but I have the attitude, physical condition and this great new ward in Plymouth all of which increase my chances of success. He is comfortable having the transplant in either Plymouth or Kings.

If we go ahead he would probably use Azacitidine and heavy duty chemo for pre-conditioning.

The Prof has offered to help Plymouth if I have the transplant there

A. Plymouth can send someone up for special training, which they do give often

B. And hands on support by telephone, email and Skype when needed.

He said King's protocols have some nuances compared to other centres for MDS, e.g. filtering T cells out of the donor transplant. Plus they have some special things they do post transplant, and can even now use Azacitidine afterwards! He is happy to share everything with Plymouth.

 

He was happy with the blood results from yesterday, as an indication the drug is still working. He expects the figures to look better 10 days from now.

So Hey Ho - I have never had a transplant and now I have a chance. It beats doing nothing!
Meanwhile I will get even fitter and plan how to manage things around the farm if I have to go through this several month trauma. The good side is, it is potentially a cure.

Meanwhile over the weekend staying with my son and his wife. We saw their new house which is part way through construction. We all then had a lovely time meeting up with old friends from London, went for a boat trip down the Thames, and all sorts of things in lovely weather. 

My last personal assistant who lives in San Francisco managed to meet up with us for 30 minutes while we past in Paddington Train Station - seen here in the photo I took 2 minutes before she got off the Heathrow Express.