learning about MDS

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Anne
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learning about MDS

Post by Anne » 07 Sep 2014 17:10

My husband was diagnosed with MDS at the end of July after a routine blood test.
He has been put on Azacitidine and has just started his second round of weekly injections. Prior to the treatment he had no symptoms except that he enjoyed the occasional afternoon nap and had a couple of irritating bleeds when he nicked himself shaving. He retired last year (aged 62) and has been enjoying a really active time playing sport - golf, tennis or badminton - everyday and was looking really well.
His first round of treatment went OK and then 2 days after he finished he ended up in hospital with a nosebleed that wouldn't stop. 2 platelet transfusions,1 blood transfusion and 6 days later he was released, only to go down with chickenpox. He has really been knocked for six and now struggles to even manage the most menial of daily tasks. We are told that the first three rounds of chemo are the worst but I do hope someone can confirm that.
Family and friends have been really supportive but it is a scary time.

Anne
davidmiller

Re: learning about MDS

Post by davidmiller » 08 Sep 2014 08:36

Anne. I believe we met last Thursday at WP in the treatment centre when I was about to start my 30th cycle of treatment. As I usually go for my treatment at 1 pm to avoid hanging around I may not see your husband this week but if either of you would like to talk I will l leave my telephone number with Gill/Bridget /Catherine and you can ring me at any time. May I say that he is in very good hands. After 3 years of treatment I have got used to the routine and I appear to have settled down to a 7 week cycle. If we do not get to talk I suggest that you both go to the Support Group annual event on 3rd October in London. I have been to the last 3 and will be going this year. If you ring Sophie she will reserve places for you.. I hope that you get in touch, and hang in there, it does get better.
Regards David Miller
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