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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AWOX15
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Re: Azacitidine treatment

Postby AWOX15 » 16 Sep 2018 10:00

Hi Christina
I hope you are feeling better after your sickness and able to continue with your treatment tomorrow. If your not feeling better I hope you have been in touch with your triage team.
My initial diagnosis of MDS was through a similar type of scenario as yours, sickness and diarrhoea, but nobody else around me had any symptoms. It was only through blood tests that I discovered what I have.
Hope all goes well.
Alan
Goldtooth
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Re: Azacitidine treatment

Postby Goldtooth » 07 Oct 2018 06:22

Hi all,
I start my 50th cycle of Azacitidine on 15/10 providing my pre chemo blood test on 11/10 doesn’t ring any alarm bells.
I saw my Haematologist on September 18th and she told me my results go up and down, but as long as they recover, which they do don’t worry. Easy for her to say!!
I feel quite well at the moment but the anxiety never leaves me.
Every ache or pain ( at my age 74 quite a few) gives me concern thinking it may be something to do with MDS.
Very difficult to deal with at times.
I’m sure it’s the same for all of you with this dreadful illness?
When I started Azacitidine in January 2015 there were 8 of us on the same medication in my cycle week, some with MDS and others with AML, now there are only 2 of us left.
I know I can’t beat it but I’ll never give in to MDS, I refuse to think of myself as an invalid.
“Keep right on to the end of the road” as the old Harry Lauder song goes.
Good luck and best wishes to you all
Anthony
AWOX15
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Joined: 20 Feb 2018 16:21
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Re: Azacitidine treatment

Postby AWOX15 » 07 Oct 2018 20:44

Hi Anthony

That’s a milestone to me. 50 cycles is a lot to have gone through. Have all your injections been in the stomach?
If the aza stops working is there a plan “b” ?
Every month is a worry.
Trying to keep rational is difficult because i feel and look normal. I can still do the things that I did before, but a little more tired than I used to be.
Like you, the aza is working, but there is no guarantee how long it will be effective.

We have to make the most of everyday and I try, but those dark thoughts lurk in the back of my mind.

Keep well,and please, I don’t want anybody to say “ keep positive “

Regards Alan
Goldtooth
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Joined: 01 Apr 2015 10:15
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Re: Azacitidine treatment

Postby Goldtooth » 07 Oct 2018 21:41

Hey Alan,
Thanks for your reply. My Azacitidine is given over 5 days, arm, arm, leg, leg then stomach.
I feel exactly as you do, the uncertainty is always on my mind.
I don’t look or feel ill either and the fatigue is present for a few days the week after treatment, but I’ve got used to being tired as I don’t sleep well at night but have a couple of hour catch up after lunch.
I hate it when people saying keep positive too, I’m sure it’s well meant though, but extremely irritating.
As to plan B, I did ask my Haematologist at diagnosis what happens when the Azacitidine stops working. She told me that Acute Myeloid leukaemia would develop and depending on my condition it would be decided what treatment would be given. More uncertainty!!
She also told me I would know when it had stopped before she did as I would get all sorts of infections etc. She is very straightforward which I appreciate. I have always had great confidence in her right from the outset and I’m sure she will do the best for me.
I think hope is all we can cling to, and keep as fit as we can without over doing things and avoid infections and crowds and places of poor hygiene.
I’m aware from this site that there are trials for AML for patients whose Azacitidine treatment has stopped working, maybe that might be an option for us in the future.
One thing though Alan which I have mentioned before, never think of yourself as an invalid. That’s fatal for your mental health which is burdened by anxiety, as mine is.
I’ve seen several patients in the clinic who have plainly given up, ones mental deterioration does have a disastrous effect on ones physical health, I’ve seen it in the clinic.
The watchword is Never Give Up.
Best wishes
Anthony
Goldtooth
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Joined: 01 Apr 2015 10:15
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Re: Azacitidine treatment

Postby Goldtooth » 26 Oct 2018 06:18

Last week I completed my 50th cycle of Azacitidine, it takes me a week to get over the fatigue.
It doesn’t get any easier, but I’m four years older so that’s not really unexpected.
I’ve been getting leg ache when walking any distance recently.
My first thought was it was something to do with MDS. I spoke to a Macmillan Support Nurse yesterday ( fantastically supportive) she said it’s all to easy to put any other condition that develops down to your original disease.
After telling her my symptoms she told me it’s unlikely to have anything to do with MDS and is very probably Claudication of blood supplies to my legs, I will be seeing my GP to confirm this.
I’ve found GPs rather inadequate in their dealing with MDS, I always check with Macmillan first before seeing mine.
If it is Claudication, that’s due to my heavy smoking for many years in the past.
If anything I’ve increased my walking as I know that that will cause other blood vessels to bypass any blockage in my legs blood supply.
Start cycle 51 on 12/11, I’m aiming for 62 cycles and beyond :)
Good luck and best wishes to you all
Anthony
christina
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Re: Azacitidine treatment

Postby christina » 05 Nov 2018 18:27

Anthony that's a great record, I'm also on azacitadine, 7th cycle started today, my MDS has transformed to AML so until I have a bmb at the end of the month at King's I won't know if it's working, my Platelets are up but neutrophils and hb right down having blood transfusions twice a month, I also have a lot of pain in my legs when I'm in bed, trying to stay positive, have now joined a leukemia support group who meet once a month with hemotolgy nurses, well attended at the first meeting last month, any tips greatfully received, keep well Christina ("Tina)
AWOX15
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Joined: 20 Feb 2018 16:21
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Re: Azacitidine treatment

Postby AWOX15 » 05 Nov 2018 19:17

Hi Christina
How have you been diagnosed now with AML without a bmb? Excuse my ignorance. So sorry to read this, but really interested to know what your treatment plan is now.
I finish my eighth cycle tomorrow and besides having a sore stomach around injection sites and general fatigue, I’m relatively ok.
It must be difficult to remain positive under the circumstances.
Having Aza treatment is a trial in itself, always worrying about your next blood results to see if you will continue the treatment.
Knowing that you continue on aza until it stops working is difficult enough to comprehend.
Please keep us updated on here, or on Facebook.
Look after yourself.
Alan

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