Richard's MDS progresses

Rosalind and I both went to Kings for blood tests and for the results of our recent bone marrow tests. Barbara came along for moral support, and to help with some shopping later.

Rosalind is fine, they are very pleased with her progress. Good results. However some of her white cells are only 8% being produced from her new donor bone marrow, so they gave her a 77 ml top up of her donor's stem cells. She may have to have that a couple of times more.

I was less lucky. My Neutrophils that had gone up over 1 (ie not neutropenic) have gone back down to .53 - which is not good. And my blasts which had gone up to 8% have now gone up to 10% - which is not good. This means that I will probably have to start some form of treatment in a few weeks.

The options are

• Azacitadine - which can give full remission to some patients, or prepare them for  a transplant
• Another chemotherapy drug - which they would use to knock the blasts down every few months until it did not work
• Or a close match bone marrow transplant

So we are looking at all options - there are high risk with all of them. So I am basically at the same point that Rosalind was about a year ago, with the added two issues of being much older and having haemochromotosis (and I will have to get my iron level down even more before treatments of other kinds in case I need blood transfusions - which would add further iron into my system)

So watch this space.

Meanwhile we are looking at options of where the treatment could happen, how to run the farm when neither of us is there, etc. I will also improve my fitness, keep my (poor) sense of humour and carry on doing as much as I can.

Blood result trends

Both of us are being treated in both London and Plymouth hospitals. So one thing I find useful is to record and plot my blood results. That way if I go for an appointment and they do not know my recent trends, I can just show them

So the three most important trends I have are
1. Blasts from bone marrow biopsy - these have been below 4 and the last time were 8 - which is not good - not enough to grpah yet (And I would like a straight line at 8, or even going back to 4 :-) )
2. Ferritin- iron levels
3. Neurophils
So here they are - click on it to see the image bigger

The good things are my ferritin level is coming back down to normal following lots of blood letting, and my I have gone above 1.0 on Neutrophils, so can relax a little about catching things for a while. I even had some Stilton Cheese the other day, which is not recommended if you are neutropenic

Double Haircut

We both had bone marrow biopsies on Wednesday – results in three weeks. Our blood tests were fine, and mine showed a big (for me) improvement in Neutrophils as I am no longer neutropenic for a while – I have gone above 1.0 to 1.36 – which is great. My red cells are taking a bit of a hammer, due to relatively frequent Venesections to get my ferritin low enough to enable me to have blood transfusion if I need them. So it’s basically getting rid of my iron filled blood, so I can have someone else’s later!

Rosalind's hair has grown back so well that she decided to have it cut. It is not long, but bits were different lengths, etc. so a trim was called for.

I had mine done at the same time – and decided to get used to short hair, as I may need treatment this year and will probably lose my hair then.