Hello I am wondering if anyone else has similar symptoms when on Azacitidine. My treatment was put on hold for a few months due to adverse reactions. Firstly large red lumps over my entire body, then dark red blisters on my legs and feet, then sore raw mouth.. I am now going back on Azacitidine due to my symptoms of Sweats, bone pain, fatigue etc. On top of all the above I continue to have what I describe as hit and run mild fevers.they last just a few days temp rises between 37.5 to 38.2 then they go and I feel ok for a few weeks then they start again.
Fatigue is also one of my major problems . Around 7ish each evening I am exhausted and want to go to bed. I hold out till 8.30 then by 2am I am wide awake with sweats. Very frustrating. I cant sleep of a,daytime although am tired enough at times.
I feel like I am moaning too much but feel this,is the only place I can off load too. My family are great but dont have a clue of how I am, they just dont understand what Chronic myelomonocytic leukaemia ('CMML') can be like. It would,be good to hear if anyone else feels like this at times.Or am I moaning too much? Thank you x
Bonny that sounds dreadful- I have Myeloma so can only relate to the night sweats and fatigue which is bad enough.
Firstly, you’re not moaning- these are truly horrible side effects you’re describing, I’m curious as to why your team put you back on a medicine they’d previously taken you off of due to adverse effects. Have you told them what you are going through again? I’d do so straight away if not. Maybe also reach out to the clinical nurses on here too?
Hope things improve for you soon x
Thank you for your reply and support, my team are so lovely, I have to trust that they know what’s best for me as I dont understand why I had so many issues on it last time. I have not been offered anything else so will see if it helps me this time around fingers crossed. X
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Please don’t think I’m doing your team down, absolutely not my intention- we’re so lucky to have access to amazing medical teams. I was kicking the tyres really, making sure they were aware you had this previous adverse reaction as when you have medication lists as long as we all have sometimes things get missed and that they are currently aware of what you are going through xx
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Hi @Bonny16 , you are absolutely not moaning. Family support is wonderful but you’re right that unless someone has been through this, it’s very hard for them to truly understand what living with blood cancer and its treatment feels like day to day.
I did want to mention the recurring fevers specifically, even though they’re mild and seem to settle, it’s really worth letting your team know about the pattern you’re describing so they can keep an eye on it, if you haven’t already. I’m going to tag in our Blood Cancer UK nurses too, as they may be able to offer some further advice on what you’re experiencing; @BloodCancerUK_Nurses.
In the meantime, I think you’ll find real comfort in knowing others on here have been in very similar situations. There are a few threads that might resonate with you, one specifically about Azacitidine side effects from other Chronic myelomonocytic leukaemia ('CMML') members, and our CMML information page if you haven’t already come across it.
Our Support Line is also there whenever you need it, and sometimes talking it through with someone who understands blood cancer helps. You can reach them on 0808 2080 888 or support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services
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Thank you, I didn’t think anything but positive support so thank. You stay positive too.xx
Hi @Bonny16 You definitely are not moaning and even if you feel you are your not.
Night sweats not nice. I’m not Chronic myelomonocytic leukaemia ('CMML') but Myelofibrosis as primary diagnosis.
I was on Azacitidine for about 13 months and part of that time with Venetoclax.
Tiredness by evening common especially on treatment weeks.
I tried to push through to 10pm. Reading and listening to music helped keep me going.
I also tended to have a nap after lunch some days
Reality is your body is dealing with a lot so try not to be too hard on yourself.
In terms of others, reality most don’t understand blood cancers. I certainly didn’t before diagnosis.
Most seem to think that because you’re not rake thin and have no hair you must be fine.
People say things like you look well.
My response was so do 90% of the people in the Haematology Clinic waiting room.
I found chatting to others in the clinic really helpful. Others with blood cancer even if not the same condition really understand.
As does everyone on the forum
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I definitely don’t think you are moaning and neither will the other forum members. It’s good that you have this space to offload. It can be really difficult for others to understand can’t it.
It all sounds really uncomfortable. I hope things do ease a little for you. Keep us updated on how you are doing
Nichola
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Thank you, I think am just a tad aware that atm so much has been going on with me and I wouldn’t want to put people off as I need feedback and like listening to others and offer support where I am able to others. X
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That’s what we are all here for x
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