11th Azacitadine dose complete OK

That was much better - half dose is a lot easier on me. And for only 5 days instead of 7 is nice.
I have even been able to do some outdoor physical work on the mornings of treatment.
The nurses got extra training on how to give the drug, and told me to make sure that was how it was done in future
Basically

• Mix this very thick drug for several minutes
• Apply at 45 degrees to the skin - normally the stomach
• And take 60 seconds plus to put it in
• If it does not go - it can sorta clog up - use another needle and try again elsewhere 

I have switched from the anti sickness pill called Ondansatron to another which has less side effects. I can do that as my body has really got used to the Azazitadine .

I have been very lucky with side effects. Fellow patients some times get bad nausea, need extra blood, saline mix if they cannot drink enough or other treatment. But they all keep their spirits up - which helps a lot.

Roz gets some great news

She went to Kings to see the post transplant consultant and was told that her results are now very very good. She still has a lowish CDM percentage, but everything else is excellent. In particular her overall percentage of blood that comes from her donor has risen to 96% - which is time to relax a bit. It has gradually been creeping up over the past six months

She had a bone marrow biopsy and aspiate, and will have that checked out in a few weeks.

But they now expect her to just switch to a monitoring phase

She was thrilled

Azacitadine dose gets reduced to half

Dr Kulasekararaj at Kings has written up about new research on MDS

The Prof and another consultant were very pleased with my results and the trends, I am responding very very well so far. The particularly liked the fact that I had not had to be supported by GCSF (besides once at the beginning of my first AZT course to stimulate my white cells which had gone very low, which is normal).

Normally they would wait for 12 courses (over a year) before changing the dose / frequency, but they want to reduce it now as I am doing so well.

The options the consultant gave were:

·         Full dose with 6 week intervals

·         Half dose with 4 week intervals

But the Prof came in and said go for a

·         Half dose, for 5 days only  (instead of 7), at 4 week intervals - which is great

And it's ok to slip a week every so often for holidays etc if I am very well.

They detected no blasts from my last bone marrow and checked with us that Plymouth are happy with the trephine. So, no more bone marrow tests unless blood levels suggest one is needed - which is great.

I mentioned that I get bad constipation from the Ondansetron anti sickness tablets used with the chemo, even at only one a day. He suggested I switched to metochlopramide or domperidone for less sever anti sickness control

They thought the Nuetrophil dip last time was a blip as the N are so good now, even though just after treatment. They have seen this sort of unexplained occasional blip happen with other people.

No-one has ever come off AZT unless it was causing problems! The best they get down to is half dose, every 6 weeks. (which they were tempted to put me on) There are new treatments that are being trialled now that look promising, including a combination of Azacitadine with another product. Again see the link at the top.

I understand that there are all sorts of reasons to come off AZT including - if there are no benefits to the bone marrow or blood, severe rashes, after a while it stops working, and lots of other potential side effects.

He looked at the rash on my elbow and suggested I see a dermatologist ASAP, who could also zap my mole again. Just to make sure it is not something nasty.

Hereditary stuff

They will do a special new genetic test of the ~20 to 30 genes that are thought to be suspect for MDS from Richard's and Roz's previous samples. And possibly later an even more through series of tests that they can now do with new technology

Things can change, obviously, but this is good news for a while