AML treatment for my father

Dear James, I have a rare form of leukemia and was turned down for a transplant even though I am only 56. This was because I suffered heart damage from my chemotherapy regime. In the uk whether or not you are deemed transplant ineligible will be a combination of everything and not just age. I have included an article which explains the issue quite well. I hope this helps clarify things for you.

Can a Patient Be Too Old for Stem Cell Transplant?

Hi James and welcome to the Community.

So sorry to hear the challenges surrounding your father and the 'where now?' questions.

I have lived with a rare type of NHL for over 20 years so do understand some of the blood cancer challenges.

Jane has highlighted that in the UK, as long as the person is in good health a Stem Cell Transplant can well be used.... we have had a number of folks in our dedicated Stem Cell Transplant Forum (SCT) in their 70s successfully go though SCT.

What can you do?...... could I suggest that you re-post your question to Caroline, our Heamatology Nurse and get her professional opinion on this. She does this as a Volunteer Experts so please allow 2 working days to get a reply.

We are always around to help out.

Thank you so much Johnty for your kind reply and the time you have taken to read my post

Thank you  so much

I was diagnosed with AML in 2016 when I was 65. They thought I was fit enough to go for transplant (in June 2017) despite having life-long asthma. It was a hard regime to go through. After the treatment, there were tiresome visits back to outpatients twice a week, then reducing weekly, 2 weeks etc. At first I didn't have the strength to walk from the hospital car park to the clinic in the hospital so dependant on being taken in a wheelchair, which I found very frustrating as I'm usually very independent and a good walker.

I was also very much confined to home for several months because of low immunity. This was very difficult for me mentally, and I was glad when I was well enough to drive round scenic trips, just to get out, even if I didn't stop anywhere. Had to be very careful over first winter because of all the bugs about, so wasn't until March 2018 I was able to get back to some of the social activities I liked, and see all my friends regularly.

Friends/family did their best to keep in touch, but they all have their own lives and activities, so you won't see as much of them when they have to come to you all the time. Some won't come at all.

On the plus side, while confined and not having much energy, I was able to work on some abandoned projects, mostly my family history for which I compiled my existing research into a 60 page book. This was the culmination of 45 years work and I am very happy I have been able to leave this completed record.

I was able to get back to gardening in September 2018 as long as I was careful about avoiding scratches and bacteria in dirt (and of course a true gardener loves to get their hands in the dirt). This gave me a great uplift in my mental health.

Your father will have different interests, but I think it is worthwhile looking at the whole picture. What will your father have to give up for many months (or maybe permanently) that may depress him to no longer have in his life. Will he cope with the loss of independence and lack of energy/fitness, though this should improve in time.

Though I never got back to driving very far, I had a lovely year between Sept 2018 and Sep 2019, redesigning and replanting parts of my garden, and making sure I saw the best of each season of flowers. I was nearly back to normal.

It was devastating to find I had relapsed in September 2019, and they cannot now cure me. I may only have a few months left.

I don't think my relapse has anything to do with my age, it is more to do with my specific gene mutation. Leukaemia UK publish a booklet that contains a detailed list of the various mutations, and ease of treatment. However this is likely to change as more data and research is done. AML remains a rare illness and the risk level of certain mutations are always being revised.

If you ask me if I would have gone through all this knowing it would only give me 18 months of normal life, that would be a hard question to answer. I have completed projects that meant a lot to me, enjoyed many things that gave me pleasure and learnt how many people really care for me (and many that were disappointing). It has been a good 18 months.

Tessa

Are you trying to decide how guilty you should feel about your father's care? Because that is not the kind of thinking that does anyone any good ever. In my experience, doctors worldwide always do their best for their patients. Its not perfect but they do the best they can with what they have.

ya alissa i feel that guilt about my helplessness in my father's case, me being a doctor