[Chirley]

Hi,

Thanks for asking. I'm still feeling okay.

I think I'm becoming anaemic because I'm pale again (I actually like being a little pale....makes me look younger). I'm also a little breathless at times and I have a mild chronic headache which are all my indicators that I'm due for a blood transfusion.

If I'm right and I do need a transfusion, it will have been a disappointingly fast decline. Its been just over 7 weeks since I had my last copper treatment and almost 9 weeks since my last blood test. The last test showed Hb well and truly in normal range and copper just below normal range. My blood levels aren't affected until the copper is pretty much near zero.

Neurologically I am having a very slow but steady deterioration. Walking is such hard work and dangerous because I'm so unsteady that I could easily fall that I spend most of my day sitting and reading or being on the net. I keep putting off getting a wheelchair because there is some kind of psychological barrier that I'm avoiding even to try and understand. My GP says it's denial, I say it's optimism. I'll deal with it when I have to.

I have an appointment on Thursday to have my port flushed and also to see the hematologist. I want to discuss the chromosomal abnormality with him. I've been thinking about it and realized it must be new damage because I certainly wasn't born with the syndrome caused by this particular deletion and because it was not found on the 10 or so BMBs I've had done.

I rang Celgene and spoke to a patient liaison person who said there have been no reports of this deletion being caused by Vidaza but that they were going to document it as an adverse event. I gave them permission to contact my doctor about it but only after I see him on Thursday because he has not been told of this finding yet.

My little dogs went for their yearly vaccinations and check up this morning and both were given a clean bill of health. The vet said that my old (13) white dog is doing incredibly well considering she has had Addisons Disease for 9 years and had an obstructing liver tumor that almost made her bleed out about 4 years ago. The liver tumor disappeared without treatment and the vet said he had never seen that before and he considered it a miracle. The arthritis medicine is working very well for her and she's a playful old girl again.

I'm very lucky.

Going to cook my dogs sausage and mashed potato for dinner as a treat after the needles.

Regards