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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christina
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Re: Azacitidine treatment

Post by christina » 12 Jul 2018 15:59

Hi everyone I'm afraid my 3rd cycle of azacitadine was delayed as I had to go in for a transfusion owing to my hb being 7.6 and my neutrophils being 0.1 then I had to wait for my temperature to go down before I could have the transfusion, outcome was they wouldn't let me home and my neutrophils were zero, hopefully will have a blood test tomorrow and able to start my 3rd cycle on Monday. Has anyone else experienced all counts coming down at the beginning, my Platelets are ok, I think having ulcers and thrush in my mouth didn't help as my glands were up and obviously I had nothing to fight with, however I now have mouth wash and anti fungal and anti viral meds plus antibiotics for a few more days. Would love to hear if anyone else has gone through similar regards to all Christina
AWOX15
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Re: Azacitidine treatment

Post by AWOX15 » 12 Jul 2018 17:06

Hi Christina
Sorry to read of your problems and it must be quite distressing for you. My consultant prescribed anti fungal and anti viral drugs before I started the azacitidine.
I am half way through my fourth cycle and my main concern at the moment is wondering where the next few injections will go, as my stomach is becoming quite tender.
I hope the medications work and you are able to continue with your third cycle.
christina
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Re: Azacitidine treatment

Post by christina » 13 Jul 2018 15:07

Hi yes know what you mean, I also use Babana Boat aloe vera gel from boots, very smoothing, can I ask if your counts ever came down at the beginning of your treatment, would be happier if mine would come up, but have to say I feel ok also have found I have a slight temperature which I wouldn't normally know, only taking it after being in hospital, think I'm only going to take it if I feel unwell, so we will see what happens on Monday if they allow me the 3rd cycle, luckly I have the tennis to take my mind off it. Thank you for your reply, enjoy your weekend
christina
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Re: Azacitidine treatment

Post by christina » 13 Jul 2018 15:08

Meant to say soothing and only £5 for a large bottle
AWOX15
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Re: Azacitidine treatment

Post by AWOX15 » 13 Jul 2018 16:54

Hi Christina, my levels did drop to start with.
My neutrophils were at 0.17 at the start of cycle 3, but have risen to 2.35 and my platelets from 84 to 142.
All levels are still low, but they are on the increase at the moment. I am aware that this can change!
Pleased it’s the weekend as my stomach needs a break.
Have a good weekend.
christina
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Re: Azacitidine treatment

Post by christina » 13 Jul 2018 20:26

Thank you that helps, hopefully mine will rise a bit on the next cycle, watch this space, keep well Christina
Goldtooth
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Re: Azacitidine treatment

Post by Goldtooth » 14 Jul 2018 06:49

Hey Christina,
My levels rose after my first two cycles.
But now they fluctuate quite considerably and I still have a degree of neutropenia, my platelets vary considerably too from blood test to blood test.
At my last review with my Haematologist in June she mentioned this but was still happy to continue with the treatment.
It’s quite worrying I know and one can quite easily get anxious at each blood test, I know I do.
I’ve got my next one on 17/7 and I always wait in trepidation after it expecting a call from the clinic to say that my next cycle, 47 won’t be given on w/c 23/7. I can only relax again at the weekend when I’ve not been telephoned, I know it will happen one day, but hopefully not just yet.
We all live from blood test to blood test, which is very hard to cope with.
Keep your spirits up Christina, it’s a difficult time for all of us.
Best wishes and good luck
Anthony
AWOX15
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Re: Azacitidine treatment

Post by AWOX15 » 15 Jul 2018 21:20

Hi Anthony
Was there a period of time when all your levels increased and levelled out in all of your cycles, or have they fluctuated from your early cycles?
Goldtooth
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Re: Azacitidine treatment

Post by Goldtooth » 16 Jul 2018 08:01

Hi Christina,
They were all higher for the first two years or so, but they have never stayed level at all.
I’m subject to frequent sinus infections and when on antibiotics to treat them my white cells take a dip.
They all vary to a different degree at each blood test, platelets in particular.
I used to religiously check my tests at the start of my treatment and give myself a lot of anxiety when I saw that levels were lower than they should be.
I don’t do that now as I’m not really qualified to assess them.
I have huge confidence in my Haematologist and the clinic will always check with her if any of my results give cause for concern and she will decide if I should get the next cycle.
I’m not being blasé about my results. I always have a degree of anxiety in blood test week( such as now) as I am due one on Thursday and if I’m not very careful it can take me over.
You have had a difficult time at the start of your treatment but hopefully all will settle down in a while.
Azacitidine is usually given for 6 months in a 7 day cycle and if successful it’s then condensed into 5 days as it was in my case.
I know from my own experience at the start of the treatment how anxious you must feel, I couldn’t cope very well at first and felt ghastly.
If you wish to talk about it further I’ll send you my telephone number in a private message, sometimes talking to a fellow sufferer can be better than email?
Best wishes
Anthony
Goldtooth
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Re: Azacitidine treatment

Post by Goldtooth » 16 Jul 2018 08:05

I should have addressed my last reply to you Alan!!
My apologies
Anthony
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