Hello Everyone,
I am here in Michigan, United States and my girlfriend’s dad was recently diagnosed with Acute Myeloid Leukemia. Her dad is 64 years old and is considered to be healthy otherwise, so he was able to be on an aggressive form of 7 3 chemo and qualifies for a bone marrow transplant. He is roughly a week passed his first round of chemo now, he’s just feeling tired and had a brief fever but continues to get additional transfusions.
At this point, we are in a “break” period as the oncologist calls it, where we wait 1-2 weeks for the chemo to do its thing and another bone marrow biopsy is done to see where his blasts are. Upon diagnosis they were at 24%. We are also still waiting for additional results to see about any additional gene mutations (said it could take 3-4 weeks about 1 week remains). He was told already that he does have a TP53 mutation poor prognosis, and I read enough to understand that it’s not the mutation you want to have but AML patients still have the ability to push through.
my question is a loaded one. Are there other questions we should be asking? Is this the process he should be going through based on his condition? What can we do to help this situation?
The news is devastating to put lightly. We are trying to get as educated as possible, so we can advocate on his behalf and that’s why I’m here.
I appreciate any advice or positive stories about your experience.
Thank you
Hi ADMc13 and welcome to this corner of the Community although I am always sorry to see you joining us and to hear about your dad.
I am Mike and I keep an eye on our various Blood Cancer groups.
I don’t have Acute Myeloid Leukaemia (AML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well….. and more so as I have had 2 Allo (donor) Stem Cell Transplants (SCT)….. consultants still tend to use the old term Bone Marrow Transplant but 99% of all transplants are now SCT.
As you may have realised the Macmillan Community is run by a United Kingdom cancer charity so our medical system is rather different from that in the USA.
Let’s look for any group members who have similar experiences to pick up on your post and get back to you.
You can also click on the main ‘AML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
