Starting on Azacitidine

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Glynjo
Posts: 11
Joined: 20 Oct 2014 17:49
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Starting on Azacitidine

Postby Glynjo » 29 Nov 2014 18:51

Hi starting on Azacitidine soon, can anyone share their experiences with me please !
davidmiller

Re: Starting on Azacitidine

Postby davidmiller » 30 Nov 2014 16:22

Hi. I was diagnosed with MDS in July 2011 confirmed in August 2011 after a second BMB. My blasts were 10% plus problems with 5 and 7 chromosomes which put me as a higher intermediate 2 on the IPSS scale and therefore eligible under the then current NICE guidelines for treatment with Vidaza (azacitidine). I started on 5th Sept 2011 on a 5 week cycle of 7 consecutive weekdays' injections. In Jan 2012 the routine went on to a 4 week cycle. After 6 months I had another BMB which showed very positive results- my blasts were down to under 5%, my chromosome 7 had been 'sorted' and my IPSS score was down to 1.5 which put me into the lower .intermediate band. The side effects from the treatment have been soreness in the stomach area at the point of injection, my hair is thinning and I feel a bit jaded while I am having the treatment with some loss of appetite. I do not bother to do anything about the soreness although my fellow patients at our clinic rub on aloe vera and others put an ice pack on the sore area. I do notice that a hot bath seems to ease it . Within 3 days after the end of treatment the soreness etc has gone and I feel absolutely fine. As my consultant puts it the treatment works but it does hammer ones immune system and the 3 key items Hb, platelets and neutrophils drop significantly. It therefore takes some time for them to recover, consequently I have settled down to a 7 week cycle of 9 days 'on' i.e. Thursday start and finish on the second Friday allow 2 days to recover and then 5 plus weeks 'off'. Although none of these key items recover to the desired levels, I do not feel tired (Hb) I do not bleed or bruise (platelets) and remarkably I have only had one cold in 4 years (neutrophils) I expect shortly to start my 32nd. cycle of Vidaza. So far so good and I met someone who had well over 50 cycles before he had a bone marrow transplant to cure the problem. From talking to my fellow patients at our clinic no two people are the same and reactions and progress can differ but my experience so far has been good. If this does not cover everything and you would like to chat,Sophie has my phone no. and email address. Good luck.
David Miller
Glynjo
Posts: 11
Joined: 20 Oct 2014 17:49
Contact:

Re: Starting on Azacitidine

Postby Glynjo » 30 Nov 2014 22:08

David,

Wow - thanks for the comprehensive and positive response. I was diagnosed as Intermediate 1 in August and referred for a SCT. Told 2 weeks ago no suitable donor yet. Up until then management was via blood transfusions which quickly became weekly. I am since had a second BMB which apparently showed no change. I was considering asking for referral to Centre of Excellence, but a change of consultant resulted in a plan to try and tackle improve my results, whilst waiting.

I am encouraged by your response as I am still working albeit with adjustments and would want to sustain this.

Glyn

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