Hello has anyone been on Azacitidine and had any of the following reactions. I suffered large lumps over my entire body, a mouth full of sores and ulcers , strange tiny deep red lumps on my legs, then finally a Spleen infarc. 6 . It’s been 6 months since this event.
My team have asked me to go back on Azacitidine due to my symtoms ect first month half dosage then increased to full dosage . I am very anxious about restating this,but my constant symptoms of feeling tired, mild fevers, itching,sweats bone pain etc. Any advice would be good. Thank you.
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Hi @Bonny16.
I can understand your worry if you’ve had all those side effects.
Hopefully others will be able to share their experiences with you.
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Yes thank you that’s what I am hoping.
I did lose a bit of confidence with my Haematology team but they are all amazing and I understand they have my best interest at heart. I was told if I refuse treatment my outlook what not be great.
Thank you for the support. I love this forum. We are all in the same boat. X
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Hello @Bonny16, I’m sorry to hear about these nasty side effects, they sound very uncomfortable and scary.
I’m going to tag our @BloodCancerUK_Nurses here as they might be able to talk through the clinical side of restarting after reactions like yours, particularly around what to look out for and how the reduced dosage approach is designed to help.
In the meantime, you’re definitely not alone in navigating azacitidine and its side effects, as there are other members here with Chronic myelomonocytic leukaemia ('CMML') who’ve been through side-effect experiences (though not alwasy exactly rhe same), such as this recent thread which might be worth a look. You can also use the ‘related’ feature at the bottom of the page, or the search bar at the top, to find other posts that might be helpful.
We also have information about CMML treatment on our website which covers azacitidine and what to expec, just in case you haven’t seen that yet.
If you’d like to talk anything through in the meantime, our Support Line is here for you on 0808 2080 888 (option 1) or support@bloodcancer.org.uk. It’s staffed by our Blood Cancer nurses, and they are completely fantastic.
Take care,
Ceri - Blood Cancer UK Support Services
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Hi @Bonny16 I’ve been on Azacitidine at various points.
It’s good that they are going to gradually going to increase dose.
I found it was important to try and not overdo it treatment week.
Just keep an eye on things and let your clinical team know of any issues asap.
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Hi @Bonny16
So sorry to read about all the awful discomforts you are bearing at the moment. It must be such a difficult decision deciding what to do. I wonder if this might be a good time to have a in-depth frank discussion with your clinician based on the BRAN system that is supposed to be in place in the NHS.
Basically
B - what are the benefits of the proposed continuation of Azacitidine?
R - what are the risks and likely quality of life of continuing?
A -what are the alternatives? Other treatments or palliative care ie just treating symptoms to maintain good quality of life eg blood transfusions, pain relief
N- what if I do nothing?
You might ask them to explain exactly what they mean by your “outlook not looking that great”.
Then you have to decide about what is more important to you, continuing the treatment and enduring the side effects or not having the treatment and maybe having a possibly shorter life but with better quality?
Do also chat with support line at BCUK. Or Leukaemia Care offer grants for free counselling sessions if you need help coming to a decision?
Wish you all the best
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Thank you. I have not heard of the Bran before.
I will ask the questions.x
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