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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Re: Azacitidine treatment

Post by Goldtooth » 25 May 2018 22:11

Dear Alan,
I know what you mean by fatigue, I get it in spades.
My 45th cycle starts on 29/5 as I think I mentioned. I’ve been on Azacitidine a long time so I’ve got used to the fatigue.
Listen to your body, if you are tired, sleep. I have a couple of hours after lunch.
It doesn’t prevent me from getting to sleep at night, on occasion I’ve also had an hour after breakfast. It works for me.
You are never going to have the energy you once had, exercise, but not too much to exhaust yourself.
It’s early days for you at the moment but you will adjust as time goes on.
Infection avoidance is a must, crowded places, people with colds, strict hygiene, takeaways, places with poor hygiene.
MDS Support can give you a fact sheet of foods you should not consume plus how to handle fatigue etc.
I used to get a printout of each monthly pre Chemo blood at the start of my treatment but I don’t bother anymore, it’s quite impossible to interprete the results correctly by the patient, as they do fluctuate each month which used to worry me needlessly.
When my results come from pathology to the pharmacists who analyse them and note them in my treatment file then pass them to the clinic. The clinic, if my results ring any alarm bells they immediately contact the Head Consultant for approval to continue with my treatment.
This has happened sometimes when I have a sinus infection which I always make them aware of at the pre Chemo Assessment. I know when they have checked with the Head Haematologist as they tell me. The Haematologist has always given the go ahead.
It’s quite easy to get obsessed with ones results( many of the patients on my cycle do) and give themselves unnecessary anxiety.
I don’t know if the unit you attend operate is as good as mine, but there’s a procedure in place that if serious concerns have arisen in the that will affect treatment the unit will phone the patient on the day of the test to advise them and tell them what action is intended.
Good luck with your golf, a hole in one maybe?
Best wishes
Anthony
christina
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Joined: 07 Mar 2013 11:22
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Re: Azacitidine treatment

Post by christina » 28 May 2018 17:58

Hi I have just finished my first cycle of Azacitidine and now on my 21 days off, have to say and fingers crossed feeling fine, will have a blood test next week so will be interesting to see how I am, yes agree with the primrose oil, it worked for me, have to say this beautiful weather helps me, good luck to everyone
AWOX15
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Joined: 20 Feb 2018 16:21
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Re: Azacitidine treatment

Post by AWOX15 » 31 May 2018 20:23

Hi Christina
I noticed you said that you had 21 days off now. Are you on a 7 day cycle without a break?
Glad to read that you are feeling ok. Having completed only my second cycle I’ve found that the first 2 weeks to be quite tiring and I’ve tried doing things that maybe I should not have done e.g gardening.
The last 2 weeks have been much better.
Anthony is the person who has the most experience of Aza treatment that contributes on this site, but it would be interesting to hear from others, undergoing the same treatment.
It’s such a difficult cancer to categorise as there is no treatment that fits all.
We don’t even know if the treatment will work. Hopefully, after 4 cycles we will have a fair idea if it will. Even then, if it does work.....for how long?
This appears to be a well constructed website, but I wish there were more contributors to it.
Glad that the evening primrose oil is helping. Any other tips would be great fully appreciated!
Good luck with further treatment.
Alan
Goldtooth
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Joined: 01 Apr 2015 10:15
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Re: Azacitidine treatment

Post by Goldtooth » 31 May 2018 21:33

Hello Alan and Christina,
I had hoped there would have been more contributors also.
When I first started posting I think I was the only one in the Azacitidine discussion group.
My Haematologist at my initial diagnosis advised me that it is effective 1—5years, which is rather frightening. But with all average statistics there are always exceptions, for some it won’t work at all and others possibly longer.
I was talking to a chap in his 80s who had Acute Myeloid Leukaemia, Azacitidine is also used to treat this. It had just stopped working for him after 102 cycles.
The manufacturer Celgene wrote an article about him as he was the longest survivor being treated with Azacitidine in the Whole World.
Azacitidine only is effective for 45% of patients with MDS, which caused me a lot of anxiety and stress when my treatment first started, but so far it’s still working.
Our blood levels are not going to be the same as normal, but will fluctuate from blood test to blood test, so it’s best not to worry about it. Your Clinic will always refer to your Haematologist if any results give cause for concern, it’s happened to mine sometimes, usually when I have a sinus infection. Treatment has always continued.
It doesn’t mean to say that I don’t worry but manage to keep it on the back burner.
Lastly my Haematologist who I have a review with every three months(next one 12/6) told me “I’d know it had stopped working before she did”
We all have to keep positive(difficult at times) avoiding infection is paramount and not dwell on the negative.
When I saw my GP when I was first diagnosed he said “there’s no point in worrying about something you can’t do anything about” I thought him unbelievably callous at the time but after being treated for so long successfully I’ve come to the conclusion that he was right even though he could have worded his response with empathy.
We are all aware that our life span is going to be foreshortened by this disease and should make the best use of the time we have left, it took me a long time to think in this manner.
As Dyan Thomas aptly said “ I shall not go gently into the good night”
I always think of the end of Churchill’s speach during the last war “we will never surrender”
I remind myself of that when I feel low.
Good luck to you both, and let’s keep posting in this forum for a long time to come!!
Best wishes
Anthony
AWOX15
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Joined: 20 Feb 2018 16:21
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Re: Azacitidine treatment

Post by AWOX15 » 23 Jun 2018 19:00

Completed three cycles now and have found fatigue during the week of treatment and for a few days after to be the most difficult times to deal with.
The “not knowing” if the aza is working or not insidiously creeps into your thoughts.
It is such an individual disease that it is difficult to compare treatment with others, especially if you are older and have other underlying health issues.
So far, no blood transfusions, but believe it wouldn’t be out of the ordinary if I did.
I have no clinical nurse at my local hospital, where I have treatment, but I have been in contact by email and wonder sometimes if there are questions I should be asking that I haven’t asked.
I have joined the Facebook page and have realised how brave and enduring some people are.
Still find the evening primrose oil helps and dead skin peels off at the end of the second week, leaving fresh skin for the next cycle!
Goldtooth
Posts: 63
Joined: 01 Apr 2015 10:15
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Re: Azacitidine treatment

Post by Goldtooth » 24 Jun 2018 06:19

Hey Alan,
There are always questions you should ask, even if the answers are frightening. The main fear of course is whether Azacitidine is working and for how long and what comes later.
I start my 46th cycle on 25/6 and I’m still scared, we live from blood test to blood test.
I can put up with the physical discomfort and fatigue at this stage of the treatment, it’s the mental stress and anxiety that is often difficult to cope with.
You mustn’t give in to that, easier said than done I know.
I’m very fortunate to have a superb Haematologist who I have a review with every 3 months and am on first name terms with every Dept Head involved in my treatment and all the chemotherapy clinic staff who will always answer any questions I have.
I was the same as you when I was first diagnosed and started treatment and still get moments of self pity and panic.
Be as positive as you can in these early days, take it from me you will get used to this awful stage of your life.
We all are stronger than we think and have hidden reserves of inner strength that we can draw on.
Sophie will always answer any of your questions and I’ve found that Macmillan Support Nurses are helpful too.
I can also help you if you wish?
Good luck and best wishes
Anthony
christina
Posts: 95
Joined: 07 Mar 2013 11:22
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Re: Azacitidine treatment

Post by christina » 24 Jun 2018 20:47

Hi Guys good to read your messages and very helpful, have just finished my second cycle, I have Monday to Friday then the weekend off then Monday and Tuesday, so now I am on my 21 days off. Stomach just starting to feel normal again, the fatigue seems to come and go, but mostly all ok, just takes me longer in the morning to get going and I find walking uphill tiring, so haven't got back to golf yet. Most of the time I feel very positive, when I was prescribed Revlimid over 5 year's ago I was told it might not work and it did for all those years and gave me a very good quality of life enabling me to do all I wanted to do and so now I look on the Azacitidine as the next step to keeping me living my life and spending quality time with family and friends, so from 2009 starting with transfusions, then Epo and GCSF, then Revlimid and now the Azacitidine, this was my choice over transplant as am now over seventy and felt I wanted quality instead of quantity and didn't feel I could cope with the treatment, had I been 10 years younger it may have been a different decision, have to say I feel very confident with my doctors at kings and my local hospital, I think the facebook MDS support site has taken a few people away from here, but there is a lot of information on here, well that's my thought for today, enjoy this beautiful weather, in fact enjoy every day warmest regards to you all Christina
Goldtooth
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Joined: 01 Apr 2015 10:15
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Re: Azacitidine treatment

Post by Goldtooth » 25 Jun 2018 04:35

Dear Christina,
I’m glad to hear that the treatment is going well for you, and the fact you are feeling so positive.
That’s the best way of facing the time ahead.
Good luck and best wishes
Anthony
AWOX15
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Joined: 20 Feb 2018 16:21
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Re: Azacitidine treatment

Post by AWOX15 » 26 Jun 2018 20:03

Good to hear from you Christina.
christina
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Joined: 07 Mar 2013 11:22
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Re: Azacitidine treatment

Post by christina » 12 Jul 2018 15:58

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
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