My Diagnosis

Hello all!

I was diagnosed with a rare form of AML called Myloid Sarcoma. Where normal leukemia is found in blood and bone marrow, my leukemia forms as a tumor off my bones and is found in the DNA of my cells. I was diagnosed originally December 2020. I then was put in remission May 2021. Unfortunately, recently, I was told that it has returned as they found a very small rise in the MRD (minimal residue disease). I am due to have 4 weeks of chemo then a bone marrow transplant will follow. My brother has already had a blood test to see if he is a match and my sister is due to fly over from Spain Tuesday to have her blood test too.

I am very anxious but staying as positive as I can. 

Anyone else had or due to have a transplant?

  • Hi  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

    I don’t have AML but I was diagnosed back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Blood Cancer ‘type’ is different I know this journey rather well……. but more so Stem Cell Transplant (SCT) (often still called Bone Marrow Transplant) as I have had two Allo (donor) SCTs with cells from my brother.

    Regardless of the type of blood cancer the SCT process is basically the same for everyone. I see that you have found and joined our dedicated Stem cell transplant support group - this will be the best place to get support so do go over, put up a post and introduce yourself to the group.

    My 23 year journey was long and complicated but you can look at my story by hitting my community name.

    I will keep an eye open for you in the SCT Group.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike,

    I am 39 years old mother of 3 young chikdre and wife of 16 years.

    I have a rare form of AML called Myloid Sarcoma. Mine forms off my bones into a tumor full of leukemia cells and is found in my DNA they take out of the cells.

    I was originally diagnosed Debember 2020 and went into remission May 2021Unfortunately y I was only in remission for 9 months as it returned recently. 

    I am due to have 4 weeks of chemo then a transplant. I am feeling very anxious but trying to stay as positive as possible. 

    Do you have any advice as I am very scared about the transplant.

  • As you will see from my post above I also have a rare type of blood cancer (CTCL) that going into my first Allo SCT was also in my bone marrow.

    The SCT process basically cleans out your bone marrow of ALL cells and the donor cells populate your your bone marrow and builds an all new immune system, bone marrow, blood type and DNA……. Think it to be like putting a new hard drive and software into a computer.

    To put the power of SCT into some prospective. Until Sep 2016 I only ever was n remission for periods of about 6-9 months so treatments were used to keep me going but my two SCTs put me in full metabolic remission in Sep 2016 and to this day it remains this way…… so SCT saved my life.

    Do put up a post in the SCT group as there are a number of folks who have been through the process recently ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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