Following AML remission for 2 years it returned in February.
I am now on month 6 of Azacitidine injections.
I am experiencing on-going weakness and soreness in my muscles [especially arms and legs] and have a stiff and sore neck and upper back.
Otherwise I am feeling remarkably well and am able to walk 8000 steps before becoming fatigued…so not all bad by any means.
Is this a common side effect for others undergoing this treatment?
Following AML remission for 2 years it returned in February.
Hi @JohnC and welcome to the group. I don’t have AML but know there are others on here who will be able to share their experience or you. How are you doing in this new lockdown?
Hi @JohnC, a great big welcome to our forum, I also cannot answer your question.
I wonder if you have checked out your symptoms with someone on your medical team?
You must have had a double whammy with your relapse and then going into lockdown, the first time. What a year.
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8000 steps to me is good, you sound as if you look after yourself…
Please keep posting how you are getting on.
Hello @JohnC a warm welcome to the forum! Sorry to hear your AML returned in February, though it’s good to hear you’re feeling well! Really hope your current treatment is going as well as it can for you.
In case it’s helpful, Macmillan have some general information around side effects of Azacitidine, and it mentions this as one of the possible side effects -
You may get pain in your muscles or joints for a few days after treatment. If this happens, tell your doctor so they can give you painkillers. Tell them if the pain does not get better.
However, as always, we’d encourage you to talk to a member of your healthcare team such as your clinical nurse specialist or consultant as they should be able to tell you whether this is something to expect or not, and offer advice around this in the context of your individual circumstances.
Hi John. I just wanted to reach out and offer support. I was diagnosed with AML 2 years ago and like you went through the full works of treatments. I guess Relapse is always on our minds, and always a possibility for us all - but I’m really sorry it has come knocking on your door. Just remember that you’ve beaten this beast once, so you can do it again. I am not a medic (my handwriting is far too good!) but on the stiffness and soreness front I wouldn’t get over concerned. I always found that 90% of the time it was the drugs I was taking that were causing the problems not the cancer! Anyway you’re doing 8000 steps per day, so you’re flying!! Keep positive and stay syrong and happy. And the very best of luck !!
Hi @Quentin, a great big welcome to our forum and you have already shown the value of it by reaching out to someone else.
I like your sense of humour, it’s a good thing you cannot see my writing as you would have thought I had missed my vocation as a consultant. At 70 yrs old I still do not know what I want to be when I grow up.
How are doing in lockdown? Take care
Thank you to all who replied.
My wife and I [no royal blood involved appreciate your support.
Hi @JohnC may I ask you a question ? How did you find out you had relapsed ? Did you have symptoms or was it from routine bloods . I am interested as I am coming up to 2 years since the end of my chemo and will have my last bomemarrow check for MRD in December ( hopefully COVID permitting ) so am interested in your story . I was NPM1 and FLT3 , treated with Chemo x4 . Helen
Good morning Helen.
I am pleased to hear that your treatment has been positive and may it continue to keep the leukemia at bay for a good time yet.
Initially, I was found to have AML through a routine blood test and subsequently had 2x5 weeks in isolation whilst I was given a mix of Cytarabine and Daunorubicin for the first week of each treatment cycle.
This succeeded in getting me into remission.
So now to your question …I am guessing it is triggered by that underlying and nagging bit that says if, or even when.
It was through this remission time we learnt to live a day at a time and have been able to continue with a lifestyle that suits us.
The relapse came with a bit of a vengence.
In the November of last year a routine bone marrow biopsy showed just 0.2 blasts but by early March they were 22.5.
As we had been doing a fair bit of walking [about 5 miles] and cycling [12 miles] I knew how my body felt.
Within about 10 days I had become fatigued, had to sit down and rest on ever-shorter walks and the pedal strokes felt as if I was tackling a very steep Tour de France mountain stage.
I guessed it was either a problem with a heart valve I had had replaced or the leukimia.
I had a blood test on the basis of these at my GPs and had a phone call the next day from my haematology team.
The rest, as they, is history.
I wish you all the best with your MRD but as we are all different and respond so differently to treatment please don’t take my story as yours.
Just enjoy each day.
Morning John ( @JohnC )
Thankyou for your prompt reply and kind words. It seems to me that AML is an umbrella diagnosis under which each of us sits with our own specific genetics /results/treatment etc , and so really we are unique with our own AML. This does make it soo difficult sometimes as we each have no clear pathway or direction and also tricky for our doctors !!! I wish you well too and thankyou. Best Wishes Helen
Doing grand thanks Erica
Hope you are too.Don’t worry, at just 70, you have ages to go before you have to decide what to be when you grow up.
…or maybe…just don’t grow up ! Sounds like a good option to me !
Stay well, stay happy.
Hi @Quentin, a good plan, I won’t grow up. You might have thought I put that plan into action today as I was out for my daily walk when it started snowing, it was stunning, I felt like a child again.
How are you doing in Lockdown 3, I haven’t had the vaccine call yet, have you?.
I must have been a rodent in a past life @Erica as my inclination when it snows is just to hibernate!
Yes, thanks @Erica I’ve had a Vaccine call up. But am stuck outside the UK so cannot attend. Ooops !
@Quentin, when will you be able to get back to the UK or can you have vaccine where you are, what would be the procedure?
Wow - how do you manage that one? Where are you at the moment?
Hi hellenjoy. I’m new to the forum and saw your reply - I’m 3 months in remission from AML after 4 rounds of chemo and am flt3 and npm1 positive like you. It’s good to hear from someone in a similar situation. Can I just ask, are you on the Midostaurin oral chemo maintenance and how you’ve found it?
Hi @Michelle26, a great big welcome to our community forum. I hope you have found the value of our community forum already by your post.
I really find it supportive just to know I am not the only one feeling, thinking and having the practicalities that I do, especially in Covid times.
I look forward to hearing more about you.
Thank you for the welcome Erica!
Hi @Michelle26 and welcome. Glad you found the forum. I hope others experiences will be able to help X