New here (AML)

Hello

not sure if this helps but wanted to share my diagnosis…

I have been diagnosed recently with AML with TP53 mutation around 6-10%  I have no symptoms and due to start chemotherapy treatment this week. I have 30-35% blast bone marrow cells. So too early for me to say if it will be successful but I know TP53 has a negative prognosis.predicted outcome…What treatment did your partner have, chemotherapy and stem cell transplant? I am mid 60s what age profile is your partner

Hi, 

He had one cycle of chemotherapy with no success whatsoever but plenty of side effects. He was in hospital for 58 days. He turned 60 in hospital. We were sent to Christie hospital for more consultation for the possibility of Flag IDA treatment and stem cell transplant but they thought he will not benefit of it. So he is just getting support like regular transfusions. He has almost no immune system and is very vulnerable and at risk for any infection. Is yours mutated or wild variant of TP53. If mutated is it double mutated? Which chromosomes? Every tiny difference may have a different outcome. 
hopefully your genetic results are better than my partner. 

Hello MZK

My chromosome test was normal is monoallelic single mutated  normal karrotype if that makes sense…

Is your husband biallelic/ double mutated and compromised chromosomes, 

it’s all so incredibly complicated which makes everything so much harder to deal with…

Hi, 

yes his case is very complicated that is why they have stopped all the treatments. Today science has nothing to offer to people with his case. We even tried to find a trail but nothing was available. That is why I was wondering if anyone in this forum has hear anything about immunotherapy or has even tried it. 

anyway it seems that your case is simpler to deal with though perhaps simple is not the right word but there are treatments that are available to you and I wish you all the very best in every step of it. 

Hi MZK I am so sorry to read about your partners journey and the challenges you are facing.

I do not have AML but navigated a similar journey a few years back when my very rare type of Lymphoma became aggressive.

You may want to post your question to our Macmillan cancer nurse team in our Ask an Expert section but do allow a few working days for a reply as they do take time to research their reply’s.

If you have not done this already you my also want to contact Leukaemia Care UK who my be able to help you out - Support Line on 08088 010 444

You may also find our dedicated Supporting someone with incurable cancer support group helpful as you will connect with others navigating the exact same support challenges.

((hugs))

Hi Mike, 

thanks for the info it is very helpful. No I am new to all this and have not contacted any of the above. Everything has been happening so fast, I find the whole thing disorienting. 

I will certainly try. 

thanks again 

MZK