Helping Each Other

One thing that has helped me a lot during the past few years is getting advice and guidance from other patients, and frankly just sharing war stories. Often this has been when I was the patient first to go through some treatment, such as the use of Azacitadine, and others have asked me what was involved or followed this BLOG.

Pete on a slip way

Richard with the Tamar Bridge behind

Pete has become a close friend, after sitting next to him and his lovely wife in waiting rooms etc. He has undergone similar treatment and is doing very well I am pleased to say. Pete has
just completed his 21st session of Azacitadine - every 5 weeks and for five days, and this has gone on for just over 2 years now.  So we both bare witness that Azacitadine can really work for some people.

We meet up away from the Hospital to shoot the breeze and visit different places in South Devon. A few days ago went to a very nice pub next to the Tamar bridge between Devon and Cornwall - the Royal Albert Bridge Inn. We had great fish and chips and a good natter
I do recommend that patients make such friends as the mutual help can be very rewarding

Great test results

I went to the clinic today and got some good test results following extensive blood tests last week

All my normal blood results were fine. The viruses I had earlier are staying away and of most importance my CD3 result was 76% which is up from the mid 60s five weeks ago. This means that 76% of my CD3 is from my donor. It should be 95%+

My whole blood value is 88% (lowered by the CD3), while my Neutrophil count. Has gone up to 100% donor, which is great

The consultant say that at least it is stable and at best improving a bit. If it does not get into the high 90s they will still want to give me a top up of stem cells from my donor, but ideally not until after 12 months to minimise side effects.

I am now off all medication except for penicillin tablets twice a day for the rest of my life, and an allopurinol tablet to stop me catching gout again. Clinics frequency has again changed from 5 weekly to once very six weeks

Coming off the anti viral drug Aciclovir may have a side effect of catching shingles. This might explain why Rosalind caught shingles a couple of weeks after she came off Aciclovir

Tommorrow I achieve another transplant objective, which was to replace my car that I have had for five years. Same model, different colour, and less miles per gallon, and a few more goodies eg blind spot car detector

My friend Pete who is on Azacitidine like I was is doing really well after many many months, so I am very pleased