azaitidine treatment

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haroldhill
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Joined: 28 Sep 2010 15:43
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azaitidine treatment

Post by haroldhill » 15 May 2011 20:00

hi
has anyone had a course of azaitidine, how did they get on and what side effects
were there any info welcome
thanks harold hill
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: azaitidine treatment

Post by chris » 16 May 2011 12:57

Dear Harold

Please see the post by David in the "My Experiences" section. It's called "18 months leading to Vidaza" (which is the manufacturer's name for azacitidine).

Also, click on this link below to see an article about Professor Rodney Taylor who was given azacitidine and campaigned successfully for NICE to fund the drug through the NHS.

http://www.dailymail.co.uk/health/artic ... -NICE.html

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
dinace1
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Joined: 07 Apr 2011 00:20
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Re: azaitidine treatment

Post by dinace1 » 17 May 2011 02:57

Hello Harold
My mum started her 1st course of Azatidine treatment Monday 10th May and her last day is today, Tuesday 17th May. 2 injections of the drug daily for 7 days. The drug is very thick and tends to sting as it is administered, mum is very thin due to weight loss which made it quite painfull for her. The injection site wounds, which are in her stomach are raw and very sore to touch. (We were told this would happen)
Mum has had no sickness, though she has sickness tablets to take while undergoing treatment. constipation is a problem though again mum has tablets for that as well. No appetite is our major concern at the moment which we are seeing someone about today, the tiredness has increased but again we were expecting this.
On the whole, mum is coping wonderfully with this new drug.
After the final injections today Mum will have 28 days off and then back for the second course.
Hope this little information has helped.
Yours
Denine
patm
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Joined: 08 Jan 2011 18:52
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Re: azaitidine treatment

Post by patm » 21 May 2011 22:36

Hi my husband was diagnosed with mds in May 2008 at this time azazitidine was not available on the nhs but he was lucky enough to have a specialist who applied for and fought for funding from our primary care trust. This was granted and he started a 6 month regime of azazitidine in august of 2008. It was a regime of 7 days of injections and 3 weeks grace, but blood tests every week. He was quite tired and did suffer some soreness at the injection sites but on the whole he found it not to bad. After the 6 months treatment his bloods had improved enormously and for the next 12 months was transfusion free and in
good health. Unfortunatley his bloods deteriated again but he was not allowed any further azazitidine due to cost and had to undergo 2 courses of intensive chemotherapy for at this time he was diagonised as having aml. It was a rough ride for the next 6 months but now he is fit and well, transfusion free and on 3 monthly visits to the specialist the last visit being yesterday. Results, specialist over the moon with blood results . He is fit and wealth and we are off to France next week for a well deserved holiday. Hope this puts your mind at rest. He has always been very positive about his condition and as always said that they must have the wrong bloke. Positive thinking I think helped a lot. Hope this story helps to put your mind at rest it is not easy but with positive thinking you can get there in the end.
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