Azacitidine treatment

Please share your experience of using this particular MDS drug - sometimes referred to as "chemotherapy". If you have general questions about azacitidine, please check our website, our Patient Handbook or call us. For personal clinical queries - always discuss with your haematologist or nurse.

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Goldtooth
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Azacitidine treatment

Post by Goldtooth » 18 Dec 2016 16:54

I have RAEB2 and have been treated successfully with Azacitidine for 2 years.
I have noticed there have never been any posts since Sophie included this subject over three years ago.
Plenty of views though, so there must be some considerable interest, anybody care to share their experiences of this treatment with me?

Anthony Abel
cavalier
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Re: Azacitidine treatment

Post by cavalier » 23 Dec 2016 12:18

Hi Anthony,

In response to your posting - I live in France and was being successfully treated with Revlimid between 2010 - 2015 when it suddenly ceased to have any effect. It was thought that a BMT would be my best option for treatment - supported by specialists in both Paris and Lille. However, they had second thoughts that at my age (77) perhaps that it wouldn't be such a good idea. They subsequently recommended, and put into effect, a cycle of treatment with Azacitidine (7 days) and Revlimid (21 days) with a short break between the two. This was discontinued after 3 cycles because it had a deleterious effect on my immune system, resulting in my being hospitalised twice with infections. I'm not sure if it was the Azacitidine, the Revlimid, or a combination of the two which caused this. Subsequently, I am continuing with regular transfusions to keep up my haemoglobin level whilst a new treatment is sought. I hope that your treatment with Azacitidine continues to be beneficial.

Geoff Luton
Geoff (M) age 77. Living in France, diagnosed in 2006. After being successfully treated with Revlimid between 2010 and 2015 when it ceased to have any beneficial effect is now back to regular blood tranfusions whilst a new course of treatment is sought.
Goldtooth
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Re: Azacitidine treatment

Post by Goldtooth » 02 Jan 2017 16:22

Dear Geoff
Thanks for your reply.
I know that my treatment will not last forever as my prognosis is poor.
With this in mind I looked at present trials to treat AML which haematologist told me would be the outcome when Azacitidine ceases to be effective. Much to my concern the ones I found precluded patients who had previously been treated with Azacitidine.
I am five years younger than you and was told that a BMT was out of the question. I can only hope that my treatment lasts as long as yours did. There are several people at the clinic who it has stopped working and they are now transfusion dependent like yourself.
We both must remain positive, which isn't sometimes easy I know.
To quote Winston Churchill "we will never surrender" I often think of that phrase in relation to the disease, it does help me to keep the dark thoughts in check.
I wish you a Happy New Year and good luck for the future.
Best wishes
Anthony
AWOX15
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Re: Azacitidine treatment

Post by AWOX15 » 24 Apr 2018 10:32

Hi
My name is Alan, a 72 year old, recently diagnosed with MDS( something I had never heard of)!

My IPSS-R Prognostic risk category is Intermediate.

I have just completed my first cycle of Azacitidine, or Aza as my nurses call it. The two injections into my belly have not been as a great concern as I thought they might. I bought some evening primrose oil after reading others using it, and have found it to be useful in reducing swelling and itching in the vicinity of the injection.
My regime is 5 days on, weekend off and further two days.
I have felt extremely tired or should say fatigued this first week.
A week ago I was playing 18 holes of golf and now I might just be able to drive to the club house!

I am interested to hear of others undergoing this treatment. I’m surprised how few contributors there are on this website considering the wealth of information on here.

Is there any respite from the fatigue in between cycles?

Reading others experiences would be helpful.

Thanks for reading.
Alan
Goldtooth
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Re: Azacitidine treatment

Post by Goldtooth » 24 Apr 2018 12:36

Dear Alan,
I too have MDS RAEB2, which means Refractory Anaemia With Excess Blasts. I am intermediate also.
You will be treated with Azacitidine in a 7 day cycle for 6 months thereafter the cycle will be 5 days with the same dosage condensed.
My next cycle (45) starts 30/4.
I’ve never put anything on the injection sites. I do get a bit sore sometimes and my legs and arms sometimes ache after the cycle ends and I tend to ignore it.
As far as the fatigue goes, that does happen but fades after a few days after the cycle ends.
You will be tired anyway due to your blood condition.
I’m 74 in a few weeks time and I definitely can’t walk as far as I used to.
Azacitidine can cause sleep disturbances, which it does for me so I always sleep for 1-2 hours after lunch.
Don’t push yourself Alan, just get some gentle exercise. Walking I find does it for me, I usually do about 5 Miles a day.
A great many people spend far too long flopped in front of the television, which is a big mistake as chemotherapy can make one prone to deep vein thrombosis. There are a couple at the clinic I attend who have this problem.
Did your Consultant give you any information regarding diet, exercise and possible side effects of Azacitidine. If not Macmillan can give you a fact sheet on Azacitidine and MDS Support can give you all the other information that will assist you.
It’s a scary time when you are diagnosed with what we both have, but you mustn’t give up and let it drag you down.
I must admit I was consumed with self pity when I was diagnosed.
Attending the chemotherapy clinic has become part of my life now, as has avoiding infection of any sort which is of paramount importance.
My Consultant Haematologist told me that infection would kill me quicker than MDS.
I wish you good luck with your treatment Alan and if there is anything else you wish to know please don’t hesitate to get in touch.
Best wishes
Anthony
Ps I wrote a blog on this site( I’ve not updated it for a long time) Read it if you want, I had huge problems getting diagnosed due to my GPS incompetence, it’s under the name Goldtooth
Goldtooth
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Re: Azacitidine treatment

Post by Goldtooth » 24 Apr 2018 12:55

Dear Alan,
You can send a private message to me on this site too if you want more information.
Anthony
AWOX15
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Re: Azacitidine treatment

Post by AWOX15 » 24 Apr 2018 13:41

Hi Anthony

Thanks for your speedy reply. I read your emails under “Goldtooth”, which prompted me to post on here.
I am surprised how few comments are made pay patients on this site.
I have spoken to Sophie, who was really helpful.

My biggest shock was when the consultant said that if the azacitidine helped my MDS that I would remain on it until it no longer worked. That changed my plans on my lifestyle, spending winter months in Spain.

Your reply was encouraging and I’m sure I will be in touch soon.

Alan
christina
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Re: Azacitidine treatment

Post by christina » 30 Apr 2018 22:28

Hi haven't posted for a few years as have been leading a very active life on Revlimid, diagnosed in 2009 first on GCSF and epo then 3 years ago on Revlimid, but suddenly my counts are down and blasts up, so after a week in Kings and many tests am looking to start on Azacitidine so have been reading with interest your experiences. Will stop now as just wanted to make contact, am sure I will have many questions when I get my head around it, my trouble is I've always led such a full life since my diagnose in 2009, I've been very lucky traveling overseas to our daughter's each year, now I have to re think things. Anyway I found you experience very helpful
Kings an
christina
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Re: Azacitidine treatment

Post by christina » 30 Apr 2018 22:34

Sorry signed off too soon, Geoff we met quite a few years ago at a London MDS forum when I was just starting the Revlimid and I asked you many questions then, do hope all is well with you, I'm sure I will be back for more advice even though I know we are all so different, many thanks
AWOX15
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Re: Azacitidine treatment

Post by AWOX15 » 25 May 2018 21:18

Just a quick update. Just completed my second cycle of azacitadine and the weekend after 5 days of treatment was quite exhausting. Fatigue is definitely the word i would use and was glad of the weekend off.
Ive found the use of evening primrose oil very useful in reducing inflammation around injection sites and the nurses have said they notice a difference between those patients that use it and those that dont.
My haemoglobin level was 8.8 before the start of cycle 2 and I was concerned that the level might have dropped necessitating a transfusion. I had a blood test on day 5 with the results given on day 6 at 9.1. No big increase, but definitely a move in the right direction.
Certainly seem to have good days and not so good days.
Playing golf tomorrow!
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