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 » 17 Jul 2018 20:59

Hi thanks for all the advice, my counts were all good and I started my 3rd cycle yesterday, must say I feel fine and after 9 years of different treatments that gave me a good quality of life I feel very positive, this is just the next stage and appreciate every day, I belong to Cancer United and do a lot with the CUFITTER a group fighting cancer with exercise and also sing with their choir, Google them, they are an amazing charity, in a perfect world there would be a cufitter gym In every county. So yes I'm a glass half full person and feel from my diagnoses in 2009 that I have been so lucky to have led a normal life, lots of people go through so much more, good luck to you all Christina
AWOX15
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Re: Azacitidine treatment

Post by AWOX15 » 03 Sep 2018 17:36

Just starting my sixth cycle of azacitadine after a meeting with my haematologist this lunch time.

My blood counts are nearly all normal and a bone marrow biopsy is not required.....phew; what a relief!

I will now continue on my regular cycle of 5 on 2 off and 2 on, until the aza becomes too toxic or stops working.

The monthly blood results cause quite an anxious time, wondering if all will be ok and the fact that knowing the chemo is working, but for how long?
I am now becoming used to to the regime and the nursing staff have now become familiar faces. I am lucky that my local hospital is a quarter of an hour from home and I’m normally home within the hour.
It must be quite difficult for those who have to travel some distance to receive treatment and I sympathise having to do this on a regular basis.

I did ask the haematologist about taking aza orally, but unfortunately that looks some way off!
AWOX15
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Re: Azacitidine treatment

Post by AWOX15 » 05 Sep 2018 16:44

Goldtooth wrote:Dear Alan,
You can send a private message to me on this site too if you want more information.
Anthony
Hi Anthony
I haven’t seen any posts from you on this site for quite a while. I hope that you are ok. Im on my 6th cycle of aza and my haematologist is not going to perform another bone marrow biopsy because all the signs show that the chemo is working.
My regime will stay the same 5/2/2 until the aza becomes too toxic or it stops working.
Are you on any other treatment for the MDS or is it still working for you?
Look forward to your reply.
Alan
Goldtooth
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Re: Azacitidine treatment

Post by Goldtooth » 05 Sep 2018 17:19

Hello Alan,
I must admit that I’ve been rather lax in my posts, no other reason that it’s still working.
I had my 48th cycle during that week of blazing hot weather. That was very wearing, the temperature in the clinic was 41 degrees.
On my knees by Friday( I’m on 5 day cycle) I had heat exhaustion that evening, I couldn’t cool off. Nausea, disoriented and faint. It took a couple of days to get over that.
Pre Chemo blood test next Thursday, always an anxious time, all being well cycle 49 starts on 17/9.
Im very pleased to hear that you are responding well to the treatment, we should consider ourselves very fortunate that Azacitidine works for us.
Best wishes and good luck
Anthony
Goldtooth
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Re: Azacitidine treatment

Post by Goldtooth » 05 Sep 2018 17:36

Hey again Alan,
You mentioned orally taken Azacitidine. Back when I first started treatment I met a patient who had Acute Myeloid Leukaemia who was trialed on oral Azacitidine in the same clinic, it didn’t work for him so they switched to injections, sadly after three cycles he died, he was in his 80s a lovely man.
He was in The British army at the atom bomb tests at Christmas Island which undoubtedly caused the illnesses.
Although it’s irrelevant now it’s very possible that my many years of metal detecting on farmland gave me MDS. Prolonged exposure to pesticides can be a probable cause. There is a farmer in the Clinic with CML who had 62 cycles of Azacitidine which stopped being effective and now he is transfusion dependent, maybe pesticides triggered the illness in him?
Best wishes
Anthony
AWOX15
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Re: Azacitidine treatment

Post by AWOX15 » 05 Sep 2018 19:05

Good to hear from you Anthony. You must have provided the the medical team with an enormous amount of information on the efficacy of Azacitidine!
AWOX15
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Re: Azacitidine treatment

Post by AWOX15 » 06 Sep 2018 17:43

Hi Anthony
I worked as cabin crew for a major airline with nearly forty years service and have wondered if radiation has had any effect on my bloods? Probably not enough research or numbers to form any kind of evidence!
Goldtooth
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Re: Azacitidine treatment

Post by Goldtooth » 06 Sep 2018 18:44

Hi again Alan,
Nothing has been proved as far as I know.
Take a look at www.cdc.gov The site covers effect of solar and cosmic radiation on aircrews and the exposure levels that should be adhered to.
It’s quite possible, but I don’t know if enough research has been made.
Miners were never aware of Silicosis or Asbestos workers about Asbestosis for many years of work until they were diagnosed.
The patient at my clinic who was at the Atom Bomb tests years ago developed leukaemia many years after, that was definitely due to nuclear contamination.
Do your remember Winscale/Sellafield and the clusters of cancer cases in the area.
The people of Chernobyl are still dying.
We are all surrounded by everyday causes of cancer that haven’t yet been discovered.
That all sounds frightening and very gloomy I know.
Not enough money is available for cancer research, maybe in years to come hopefully that will change.
Sometimes I find it hard to quell how scared I am of the future for me, I imagine that you feel the same.
It’s very important not to give into those feelings I know because ones mental state can effect you physically. I was diagnosed with Clinical Depression in 1994. I recovered after a year of treatment but it took a terrible toll on me and my family.
Don’t ever lose hope Alan, I don’t always practice what I preach though.
I apologise if what I’ve written is depressing, that wasn’t my intention I assure you
Best wishes
Anthony
christina
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Re: Azacitidine treatment

Post by christina » 15 Sep 2018 13:42

Hi everyone I'm here stuck in bed after a night of vomiting and diarea, had my fifth day of azacitadine yesterday and not sure whether that's the cause or that I had fish and chips for supper, no one else was sick, have a normal temperature so putting off phoning the hospital just lying here hoping it will get better, feeling exhausted, also had to have a transfusion beginning of the week, have been so well that it's hard to understand what's happening, anyway back in for my last two days of chemo on Monday, see what they say, hope everyone is well regards Christina
Goldtooth
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Re: Azacitidine treatment

Post by Goldtooth » 15 Sep 2018 14:53

Dear Christina,
I’m very sorry to hear of your troubles.
It’s very probable that it may have been something you ate, I was warned at the beginning of my treatment to avoid takeaways.
Even though everyone at the meal was not unwell it doesn’t mean you can rule out the food.
Remember your immune system is very vulnerable due to probable neutropenia so you are at constant risk.
MDS Support issue a fact sheet of foods to avoid, if you haven’t already got one ask Sophie to send it to you.
Takeaways are always risky even with a good immune system. Staff often don’t always follow strict hygiene protocols and dare I say it’s possible that one or other of the diners don’t either.
Always remember we are vulnerable to bacteria that have no effect on people with a normal immune system.
I hope you recover quickly and are well enough to complete the rest of your cycle.
Good luck and best wishes
Anthony
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