Roller Coaster

Rosalind had her neutrophils go down to 1.1 and then got a throat infection. This got worse and her temperature went up to 37.5 C, which was not a problem. Then last night it shot up over 38 C so she had to go into Hospital ASAP to be checked out. This was after 9:00 p.m. So a friend kindly baby sat. At 11:00 p.m. she had not had results of a blood test back so her partner had to go home to take over and Barbara went in. Luckily her neutrophils had gone back up to 2.0 so she could be discharged with normal anti-biotics as opposed to intravenous ones. She is OK now, having a long lie in

Meanwhile my neutrophils have gone down to .6, so I cannot go near Rosalind and have to be more careful again

Rosalind gets another upset, and I finish my third lot of AZT

Good news

Well it's Wednesday. I have had seven(actually 14) lots of AZT this week. No real problems. The usual nausea, constipation from the anti- nausea drugs, horrid red blotches across my stomach, and excessive tiredness.

In spite of that I have managed to do quite a lot around the farm this week - mainly moving, checking and sorting out sheep to go into different lots for sale.  It has been very nice working my sheep dogs, especially Josh. His mother Whisper is still willing, but getting on a bit. Last weekend we had folks coming to buy sheep, and we really enjoyed sorting them out 33 lovely Hebridean pedigree sheep

Less than good news
Meanwhile Rosalind has had another upset to her recovery. Her latest Chimerism test has shown that her original bone marrow is still taking up too high a percentage of her total number of cells. It is the so-called CD3 cells where her donor cells only represent 25% of them. Only a full marrow marrow biopsy will tell them exactly what the issue is and what to do next. It could, for example, require her to have low dose chem followed by another top-up - but we just do not know yet.
Her bone marrow test will be on Monday, and then we have to wait 10 days or so for both Kings and Derriford to analyse it.

Tranche three of Azacitadine starts Monday

I had some tests today which confirmed that I will start with AZT again on Monday. Same again - each day next week, then Monday and Tuesday the next week. After several days of feeling much better and full of beans, I have felt more tired the last three or four days. My blood results showed this, in particular that the neurtrophils had come back down from 2.0 back to being neutropenic at .9 Mind you that is not bad - I could live with the restriction of .5 to .9 indefintlty if I had to So once more into the breach It's not bad - just a pain in the stomach I am gutted that I am not up to going to the funeral of a dear friend whose funeral is a long journey away. So this MDS like many other deseaes does mess with your life.

MDS Patient Support Group

MDS Patient Support Group website

    

If you are an MDS patient of carer in the UK and need help or advice I recommend you contact the MDS Patient Support Group. My wife and I found it very valuable to go along to one of their meetings. They have half day events from time to time and shorter regional ones.

MDS UK Patient Support Group

Tel  +44 20 7733 7558

If you are an MDS patient in Devon, this meeting might be a great one to get to know others and to share experiences.  Ros and I will be going

MDS Patient and Family Regional Meeting in EXETER

Tuesday 11^th October, 2011

Guest speakers:

Dr Hannah Hunter, Haematologist in Plymouth and Sophie Wintrich from the MDS UK Patient Support Group.

Location: Royal Devon & Exeter Hospital

Reception of Yarty Ward, Barrack Road - Exeter EX2 5DW

Starting 6.00pm - Finishing 8.00pm

Refreshments will be served.

  

This meeting is free of charge and open to MDS patients and their guests.  Patients, their families and friends will have the opportunity to participate in an informal discussion regarding their quality-of-life issues living with MDS.  New therapies and treatment options will be discussed.

MDS patients and guests from Plymouth and North Devon will be joining the Exeter group as well.

For registration and more information, please call:

Tania Davidson at the RD&E Hospital on Tel: 01392 402879

Getting out and doing some work

For the past 4 days I have felt a lot better and stronger. It's probably because my Neutrophils have increased from nearly zero up to an outstanding 2.0 !!! I have managed to do lots more around the farm and today we have taken three sheep to the local Kingsbridge Show. I am still being very careful about dust, hay and other ways of catching things. Its also nice being able to have the odd drink and go to the shops - small things that one comes to not even think about can now become something you really look forward to. I have another clinic on Wednesday, and all being well will strait another lot of treatment the following Monday. I have not heard if I have a donor for a transplant yet. Ros is doing very we'll and had a lovely few days holiday in Wales and Bristol. Being so much better has lowered the stress in the family quite a bit.