New diagnosis- therapy related AML

Hi Jay2024 and welcome to this corner of the Community although I am sorry to hear about your diagnosis. 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.

I have had a search of the old posts and there is no posts covering T-AML but there may be group members with experience who may pick up on your post and get back to you.

You may also want to look at our general Living with incurable cancer - incurable patients only  Support Group…… This group covers all cancer types (Please join the group but for everyones safety this will then have to be approved by the Macmillan Community Team so will not happen immediately)

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

Always around to help more or just to chat

Hi Jay,

I was diagnosed with cervical cancer in June 2021 was treated with chemotherapy and radiotherapy. In October 2022 I was diagnosed with therapy related aml, like you I was told I had 3 months to live if treatment didn't work. I was put on a chemotherapy called vyxeos. After a period of time a bone marrow biopsy confirmed I was in remission. I was then put forward for stem cell transplant. My siblings were all tested and thankfully 3 of them were exact matches. After numerous tests they confirmed I was healthy enough to have stem cell transplant. This was done in April 23 I was in hospital for 4 weeks. Since being discharge I have been in and out of hospital with various infections. My immune system is improving and I've had a lot of my vaccinations. Currently I only attend hospital once every 2 months and I feel very well. 

Have they spoken to you regarding treatment and stem cell transplant?

Good to hear from you AF55 ….. I did not realise that you had T-AML.

Yes I was told I was very unlucky as less than 5% of people treated for cancer will develop this. I haven't come across anyone on the forum who has therapy  related  aml  that's why I responded to Jay. 

Hi there, it’s so good to hear from you as I don’t know anyone with T-AML. I have damaged dna from the chemo and immunotherapy I had in 2019 which will affect my life expectancy. It’s been a huge shock and I’m still struggling to get my head around it, because of my kids.

like you, I’m having Vyxeos. I am currently in remission after the first cycle of chemo and this week I’ve started a consolidation cycle. Yes, they are talking to me now about a stem cell transplant from a stranger donor. I don’t know when that will be. It’s so good to hear you have had a transplant and you are well. It gives me hope x

Thank you Mike for your response. It’s so good to be in contact at last with people like yourself. It has been a lonely road so far. 

I don't know anyone with t-aml so when I saw your post I had to reply. Its extremely rare to get t-aml and I was absolutely stunned didn't really have time to think about it as they started treatment quickly due to it being so aggressive. I started vyxeos in the November then had further dose in January I found it not too bad, the worse thing was attending hospital almost every day for blood transfusions and platelets. Since my transplant I have had no blood or platelets. The transplant is tough as you are in hospital and I was only allowed one named visitor which was my partner but my children and other family members were not allowed. When you've had one cancer you never think you'll get another and certainly not an awful one like aml. But I got through it and feel really well. Just take one day at a time, if you want to ask anything give me a shout.

Take care x

Hi again Jay2024 and I am glad that you have connected with AF55 

Although my type of blood cancer is completely different I know the Stem Cell Transplant (SCT) journey rather well as I had 2 Allo (donor) SCTs with stem cells from my big brother.

The first was back in June 2014 with the second in Oct 2015…… I am coming up to 9 years out, in remission and I will never be cured…… but I turn 69 in Nov and I am getting ready on with life.

We do have a dedicated Stem Cell Transplant support group covering all blood cancers….. as the SCT process is basically the same regardless the blood cancer type.