Hi There,
I was diagnosed with AML in July 2018 and now in remission. Just interested to hear about people with that diagnosis…my consultant and team have been unable to find any MRD in me and a bit confused about that. I also wondered how long it took people to feel 100% recovered, although i actually feel nearly normal I still get fatigued at times.
Thanks!
Dear Anna welcome to the forum, I don’t have aml but ppcl myeloma, I’m so glad to hear you are in remission and feeling generally well. Every patient is so unique I think doctors struggle to give reasons for unwanted symptoms during recovery and in the longer term. Remember the treatment you have been through is life changing from a psychological point of view, and sometimes this can manifest itself with physical symptoms. You need to be kind to yourself and learn to prioritise what you need. My treatment was much easier than yours and it’s only a year on that I have acknowledged how difficult I found it all.
Best wishes
Alfie
Hi, firstly I would just like to give you a great big welcome to our community forum. I do not have AML, I have CLL. I echo @Alfie words, just think what your body has been through emotionally and physically since the tremendous shock of diagnosis onwards. Also we are such unique, special individuals, with differing medical histories and lifestyles so perhaps there is no answer to your question. I have realised on this site often the diagnosis does not matter and we all share the same fears, questions, thoughts and feelings. Take care and please keep posting how you are.
Welcome @Rowanstar ! I am so pleased you’ve found our community forum. How are you feeling, I imagine its been a difficult and challenging year for you since diagnosis and going through treatment? I think lots of our members would say recovery is a process, and there is no right or wrong time or way that this happens to you, and some days will be harder than others.
You may find the blog shared in this thread Living in remission from AML - how it feels written by @AnnaMam good to read.
Thank you Alfie, very true and kind of you. It’s a real shift of mind to prioritise your own recovery and needs.
Thank you Dawn. When I was diagnosed it was a massive shock amd in some ways I think recovering from the shock and psychological side of it has been worse than the physical stuff. My initial symptom had been mouth ulcers and whilst I knew something was wrong I just though it was a deficiency like B12 or even coeliac disease. Luckily my GP did a blood test as I really thought I had coeliac disease. I had no inkling I had leukemia. I had 4 rounds of FLAG-IDA high dose chemo which was really tough but luckily got through it. I feel really lucky as the Churchill has been amazing.
It certainly sounds like your GP was thorough and diligent in sending off your blood test, I can only imagine the shock when you had been thinking it was something totally unrelated to leukaemia.
This page, albeit from an American blood cancer charity, explains MRD really well and may help you make sense of what it means! https://www.lls.org/sites/default/files/National/USA/Pdf/Publications/FS35_MRD_Final_2019.pdf
Hello, apologies for the late reply to your post. I too am in remission from AML (diagnosed in 2015)
I still don’t feel 100% recovered, I’ve spent a long time trying to come to terms with my new normal, though at the moment, after 4 years I do feel like I am finally winning. For me it has been a long hard slog. Are you receiving any help or advice at the moment regards nutrition and exercise?
The MRD (minimal residual disease) tests that you have, which determines whether or not there are a ‘small number of leukemic cells’ present in the bone marrow are an important part of monitoring you after treatment finishes. MRD can be responsible for relapse so if you have none then that is a good thing. If you are on a trial you are monitored for this as part of that so that they can determine the effectiveness of treatments and make sure you are still in remission. Does this answer your question or would you like to know more?
How are you doing @Rowanstar - are you beginning to feel any change to your fatigue or how you’re feeling emotionally?
Hi there thank you that MRD article was really helpful. I think what has happened with the MRD is that they have done flow cytometry which has come back negative which is good but my consults wishes to do even more sensitive tests like the next generation ones but for some reason this wasn’t performed after my last bone marrow biopsy. But hopefully it will be done next time. I will keep you posted!
Hi, How are you doing?