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'