AZACITIDENE TREATMENT

[JRHA5]

Hi all.
Im just been to see consultant today and he was talking about me starting on AZT. And hopefully after the 6 month cycle move on to the stem cell transplant. My white cells and red cells and plateau r low but have been stable since i was diagnoised with MDS. I have no symtoms yet. Work full time and still gym 4/5 a weeks. If no one had told i had this shit disease i would say i am fairly healthy 4 a 60 year old man. Im thinking they want me to start sooner rather later. My blast r celebrity8/10%. What i was wondering if anyone could give an advice. My problem is im self employed and no work no pay. So im wondering do the side affects stop u from working. Personally i would like to wait 6/12 months. But dont wanna go against the advice. I just fell so well at monent. Its all so confusing. Any advice would b welcome. Tjanks

[chris]

Hi Jay

I’m so sorry to hear that your MDS had become more serious - despite you still feeling so well. Also I understand your financial worries if you cannot work due to the treatments that are planned for you. I’d suggest you contact Macmillan for advice on the financial side as there may be some benefits you could access.
The Azacitidine treatment involves going to hospital appointments as an outpatient for 5-7 days every month. The side effects that people experience vary widely and it’s impossible to say how you would be affected. It would be best to discuss with your haematologist what the likely impact of having a stem cell transplant would be but you certainly would need to plan for being off work for several months as it is very dependent on what side effects you experience during and post-transplant.
Please take a look at our website for a video about stem cell transplant.

Just to let you know that if you cannot post on this Chat Forum, you can call our support line or send and email and we will try to answer your questions.
Take care
Chris

[JRHA5]

Thank u chris. I will take your good advice on board.

[JRHA5]

Just had my 1st injections off azacitidene. Home now. No reactions yet. Just hoping it stays that way. But am expecting the pain to come. Im having a 6 month cycle then hopefully if things go well a stem cell transplant at the end. Im 60. A little early. But hopefully my age will help. Im fairly fit i would say. If anyone got any information off taking this drug will b great. Ive brought some pemrose oil 4 the injection site. Im hoping the sickness will not b to bad. Im hoping to comtinue working.

[chris]

Hi Jay

Hoping your treatment goes well and not too many side effects for you.

Have you checked out the new information about Azacitidine on our website - including some useful updates by Prof Vyas from Oxford?

Here’s the link.

https://mdspatientsupport.org.uk/what-i ... ne-vidaza/

Hope it helps

Chris