Tenth course seems to be going fine now

The doctors decided to only give me a half dose as my Neutrophils were so low, compared to in recent months. The first three jabs were fine. Four to go next week. Yesterday they checked my Neutrophils, and the good news is that they have now gone up to 1.7. So the numbers went .5, .4, .8, .9 and now 1.7. All a bit wuierd, but in the right direction and back up into the range it was in during courses 6 though 8.

A blip with my Azacitadine

I should have started my tenth course of AZT 10 days ago but my Neutrophils insisted on a trip to the basement, going down to .4 or so. All these results are plus or minus a bit, but a graph shows the trend very well

At this stage of the treatment they would want me on stable minimum of around 1.0

Well today they have got up to .9 so that is near enough. (when I first had it the treatment then .6 was OK - its the average over a period of months). So I had half the dose, so only one injection. I tried gentling ribbing some evening primrose oil over the spot and other other rashes I had - and it reduce the redness and itchiness a lot. (When I had done this before I waited for 12 hours before I did it - a paper I read said do i straight away)

The consultant in Plymouth kindly rang the consultant in Kings, London - probably to discuss both Roz and myself. Between them they have decided to carry on with the 10 th course of AZT, but to halve the amount I get. This is probably because you can get a toxic effect which forces your Neutrophils to go down more than normal, which is a bit odd after 9 months of it. After that I will get another bone marrow aspirate / biopsy so that they can have a good look at the impact.

My last bone marrow biopsy showed that blasts were normal and that the AZT was doing its job. All very weird.

In 12 days I will then go back to Kings for a clinic and will discuss these strange effects and see if their wider experience, when they did several years of trials of AZT, can cast light on it.

At least the AZT seems to work for me, mostly, and for a few of my fellow patients. On the other hand, I also know one patient who could take the treatment and its side effects, but it was not working. And another who kept being violently sick so had to come off it again very quickly.

 Roz seems to be doing fine and is working with a friend all day today doing some ceramics

Topup for Roz and 10th cycle delayed for Richard

Rosalind at Kings 3rd April 2012

Rosalind had blood tests, which were fine, followed by her 5th DLI (top-up of stem cells from her donor). This time they upped the dosage to 132 mls. They said the dose was double the last time to help stabilise the lymphocytes. She may get a graft Vs host reaction from 10 days to 40 days after and has been warned to check for rashes and other symptoms carefully. (Since then she has had rashes on her stomach which look like the reaction expected)

We were lucky to get an impromptu clinic with a new consultant. He has been there since the early Autumn 2011and seems very knowledgeable.    Kings have had a lot of staff changes this year, which you would expect with a teaching hospital that does research.  Kings will check how much stem cells they have left, and if necessary ask for more.

Any further childhood vaccinations will be delayed until Rosalind's system has stabilised to to the required level. She has just had her first lot again - MMR

She is to carry on with all the drugs. She may well stay on the antibiotics for the rest of her life, and the aciclovir for many years. If she wants, she can stop the folic acid.

She should go to Kings on 22 nd May for a bone marrow and a chimerism test, followed by clinic.

We have also dropped a not to Prof mufti to remind him about doing some more hereditary tests.

Richard - should have been starting 10th Cycle of AZT

My bone marrow samples have arrived at Kings, and I have a clinic at Kings on 23rd April.

At my last clinic my neutrophils were going down. My10th course of AZT was delayed 8 days, to today, because of Easter - no pharmacists on over holidays unless for emergencies. Blood tests today showed my neutrophils had plummeted to .5, which means they have to recover before another cycle. We believe I should now have some GCFS to promote neutrophil growth and then start with my next session next Monday. The registrar thinks I should wait to next Monday to make that decision - which puts me at over 6 weeks before cycles which the prof does not like. So we are in negotiation to ensure the right thing is done

Here you can see my neutrophil results over the past 6 cycles. Each dip is when I have treatment. The big jump was an anomaly due to having flu for a few days and neutrophil production went into over drive. If you ignore that jump then I should hit zero next week! Hence my 'negotiation'