Tablet form azacytidine

Hi Pakora  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

I don’t have AML but I was diagnosed back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I know this journey rather well.

Let's look for some of the group members to pick up on your post.

You can put azacytidine into the search tool near the top, select ‘anywhere’ and this will bring up all the relevant older posts and as always you can hit reply and see if the member us still using the site.

It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups most are online at the moment….. the one I attend does have a few folks with AML in it so worth checking.

Always around to help more or just to chat

Thanks Mike.

Hi Pakora - I'm back on here as I was updating folks on my dad's journey so far. When he was diagnosed in Nov 2021 aged 69, the prognosis didn't seem all that good. Cut to now and he's in remission and going for SCT next week! This could be a cure for dad. 

Initially dad was put on azacitidine injections and venetoclax tablets. He did very well on them and only had a few side effects. That go him into remission within three months! 

Please remember that we are all unique and we may have only minimal side effects. Mindset is hugely important and the mantra we employ is; "what if everything goes right?"

Sending you positive vibes that you will experience all the benefits of aza - it really is a wonderful drug and they're making advances all the time

Good to hear the progress Jaheen  do remember we gave the dedicated Stem cell transplant support group.

Thanks Jaheen.  I'm also a big fan of positivity.  However, I've neem told that transplant is not an option so, in my case, azacitidine tablets are being prescribed as a maintenance drug i.e. to keep my alive for a couple of years.  That;s why I'd like to know others' experience of it in tablet form.

Lots of good luck and wishes for your partners SCT

Azacitidine worked really well for my dad and he was able to do much of what he used to do. Think the thing that helped him when he was on that treatment was drinking plenty of water, flavoured helped him get the volume he needed and going for regular walks and keeping as active as possible. 

Hope you get on well with it and even though you're not a transplant candidate, new treatments are being developed all the time. Best wishes! 

Hi Pakora my mum has been given the same prognosis (she is 74 with Parkinson's) and started azacitidine injections and venetoclax tablets in Oct 2022. She is now in round 3 and has tolerated the chemo pretty well - slight loss of hair, some tiredness (but not what I would call fatigue) and some loss of appetite (but no nausea). Round 1 of chemo had lots of extra medical interventions - drip, blood transfusion and platelets- but round 2 and 3 have been much easier so far - only extras have been at-home injections. She aims to drink 2.5 litres of water a day but does struggle with that.

I don't know if your experience will be similar, but we seriously considered the 'no treatment' option offered - I am now very glad that she actually decided to go for the chemo route.

I wish you the best of luck on your treatment journey x

Thank you Jaheen, that's good to know.  I'm a keen 'walker' (I roll rather than stroll as a wheelchair user!) and am currently organising a trip to Australia and USA, with the aim of doing some hiking in both places.  It's good to hear it will also be good for my leukaemia   Sounds like I will need to get into training on the drinking lots each day though.

I really appreciate you responding to my request and will keep my fingers crossed for you Dad.

Thanks Amber111.  It's encouraging to hear that the side effects did not last long or were minimal.

I'm going on to the tablet form a azacitidine only, to keep me in remission for a couple of years.  If I'm lucky it will work for more than a couple of years and I feel I have the resilience - and definitely the mental attitude - for that to happen.

Like your mum, I suspect that I will also find taking in enough water a bit of a struggle too - a pretty minor hurdle to overcome though, eh?

I hope your mum continues to do well and I really appreciate you taking the time to respond to my message.

Hi Pakora my mum got another good report from consultant on Thursday so the treatment is definitely working. I agree a positive attitude makes all the difference - good luck ! Xx