Azacitadine treament for Richard's MDS - day one and two

Well yesterday I had my first injections of azacitadine. In many senses it was a lot less trouble than I had built my self up to deal with. After a normal one hour wait in outpatients two nurses who had not used the drug before got me sat down ready. A registrar came around and checked that I was in good health and gave me a 30 page document to read on what it is for, and a long list of possible side effects and risks - fun reading I can tell you. Barbara also went through it.

The actual injection is very easy, but just before they give you a tablet for anti-nausea - a common side effect. I have to take those twice a day until the 7 day course is finished. They also gave me tablets, one a day, to stop me catching gout. Now I normally get gout once or twice a year and it is very painful - I treat it with heavy duty special pain killers. This tablet, however, stops the crystallisation in your toes and you do not get the pain - I am told.

The actual injection was in 3.4 mls of azacitadine in two places a few cms apart, It took a few seconds and was no problem. I hung around for 30 minutes to ensure I was OK and then left.

Later in the evening I found I had two rashes had developed, The upper picture shows one of them that evening and the lower one this morning. It is about 3.5 cms  high by 4.5 cms across.

When I went back for another injection today, one of the consultants who had used the drug before said that the reaction was the classic rash that you get. So I thought it might be useful for others to see what it looks like, With me it was a bit itchy for a while but otherwise seems to be no problem. By this evening it has started to fade. Five hours after this afternoon's injections I have had no new rashes - which is great

By mid next week I expect my blood counts to have plummeted and I shall have to be even more careful for a few weeks. The lounge at home will become a mini-office as well as that beloved day time television. I shall still take the dogs out around the farm to keep me fit both physically and mentally. I also have to eat little and often, drink a lot of fluids, check my temperature in case of fever, monitors for nausea and loads more possible side effects

The really weird thing that Rosalind felt as well is that you go into hospital and basically agree for the staff to poison you, when you actually feel very well. And you know you are going to feel like shit a few days later, and there is a chance of more serious risks. Its very scary. And all this is down to trust between you and the hospital staff that their tests are correct and that things you cannot see or feel have to be treated ASAP. The other thing is that you do not have much time to agree the treatment. MDS can progress very quickly, as Ros found out, so starting treatment and getting a donor lined up quickly is life critical. One way of helping this is to have supportive carers and a very positive attitude.

Meanwhile, while all this was going on Ros joined me in hospital to have a whole series of tests done, She had normal blood tests, a blood chimerism test - which can figure out what % of each type of cells is coming from her donor. She also had a bone marrow tests, which is necessary to determine the underlying status, and a special bone marrow chimerism test - similar in objective to the blood chimerism test.

So poor Barbara was taking it in turns to sit with one of us then the other. At one time they moved patients around a bit so that Ros and I could sit together and keep each other cheerful. Very surreal. Very weird. Two of us in one family with a very rare disease yet again being treated together.