My life after diagnosis of AML and its early relapse

Living with and after blood cancer
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Hi all…

I am Murshid, living in India. I am not sure if someone outside UK can be part of this community and share their experience here or not, but however, I would like to connect with people with experiences similar to mine from anywhere in the world. Unfortunately, my Google search could not find a similar forum from India or one without geographical boundaries in their name/description.

So, assuming that I am welcome here, I would like to share more of my story, and of course get to know other people here.

Let me wait till a moderator or whoever that may be decides if I can actually be a part of this community, before sharing more about my ongoing treatment.

Thank you

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Hi @Murshid you are extremely welcome here on this UK support forum.
But just be aware that diagnosis, treatment plans, treatments, medical facilitates and available drugs might be different in different countries and areas.
We are very much about supporting each other through people sharing their stories.
We are unable to give a medical diagnosis or medical advice.
At the top of the page there are the’ terms of use and show to’ guide’.
Really look after yourself and I look forward to hearing more about you.

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Thank you for the reply Erica, and for the very warm welcome!

You have pointed out rightly that there could be differences in the way the diagnosis and treatment are done in different places, but I guess Acute myeloid leukaemia (AML) patients and their care givers from different places can relate to each other as they have a lot in common about their disease and experiences.

By the way, I have had a quite early relapse of Acute myeloid leukaemia (AML) Inv 16 which was first diagnosed on April 30,2024. I had achieved complete remission after induction with Azacytidine+venetoclax. consolidation was done with 3 cycles of Hidac. Negative MRD (Minimum Residual Disease) reported in flow cytometry after induction and after 2 cycles of Hidac.

By August 2024, it seemed to me and my doctor’s that my stint with cancer is over.

But by December, my follow up CBCs started showing a developing pancytopenia. My doctor decided to have my bone marrow tested, only to find out that my disease has relapsed. Not only that, I am now found to have 8% of my TP53 genes mutated.

However, I chose to take a chance with FLAG-IDA, followed by a bone marrow transplant. FLAG-IDA is over, and now I am being conditioned for the Bone marrow transplant, which is expected to start within a few days.

I shall share an update hopefully after a successful Bone marrow transplant.

I am always positive and allow no worries to occupy my mind. It was a great experience so far, knowing how far my Doctor’s were willing to go to save a life and make my days meaningful, and how much love and care my family and friends were able to shower on me without a pause.

Now, I just thought somehow it is going to be great if I could meet more people who may add some new perspective to my experiences and may benefit from anything that I have experienced (which is just a wish of course).

That’s all what I have now… I shall be around reading about others and sharing any update when I have.

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