Looking forward to Christmas

Rosalind and I have both been checked out today and are both in good nick. So we can both look forward to a nice long Christmas break.

We both hope that you all have a great holiday - and remember that life is short so make the most of it

Happy and healthy new year to everyone

Roz and I have a clinic with Prof Mufti

Prof says to go ahead with next course AZT, and I am doing very well. He reckons my graphs are a great advert for Azacitadine - 'that is what is supposed to happen.'

The drop in Ferritin is because my red cells are much better and many more in number.

We should carry on with AZT until I have had nine courses (nine months)

I am to go back and see Prof - 27th Feb, just before 9th tranche

After all nine courses, he wants me to have a bone marrow biopsy at Kings, when they may check extra things

Things to watch out for on AZT are

- blasts going back up

- rash getting very bad

- granulocytes going very low

GCSF can be used to get  granulocytes up again

Can reduce dose of AZT by up to half to reduce rash - sometimes does not work

Can delay treatment, after 9 months, to 5 or even (a max) 6 weeks between courses, and / or with reduced dose. It depends on how I am doing, side effects and counts

He is happy to have the odd 5 week between courses in meantime. Eg over Xmas

He is very very pleased with Rosalind's progress. As with other patients we may need to now also address the emotional and other 'in your head' aspects of post transplant recovery for patient and carer. One of his staff is starting a research project into this.

Hereditary aspects

They feel there must be some genetic link but have not found one yet ( other than in 25 specific cases with known faulty genes). They are doing a very complex genetic analysis on a large number of patients, including the two of us anonymously, which will take about another year to complete. They are developing specific genetic tests. He is considering what we, as a family, might need to do. 

The future

I may stay on AZT for a very long time

Possibly with help of GCSF, varying dose and / varying between 4 and max 6 weeks.

There are two new promising drugs being trialled at Kings, one of which was developed at Kings.