AML remission options

[tony9]

Hello,
My 18-year-old son was diagnosed with Acute myeloid leukaemia (AML) and myelofibrosis, and the presence of a deletion of the 7q chromosome arm was also detected,he is diagnosed two months ago. The first therapy was the DA Protocol, but unfortunately, it did not lead to remission. The second therapy was Flac Ida, and we are still waiting for the analysis to see if it has led to remission. In case remission is not achieved again, what would be the next steps? I would like your opinion on this.

Additionally, he is scared and very nervous. What could help on this. And is it normal?

[Erica]

Hi @tony9 welcome to our forum I am so glad you have found us and had the courage to post,
I cannot imagine what it is like being a parent and seeing, feeling and being so powerless to make things better for your child.
This is a medical question that we cannot answer as your son’s medical team will take a lot of information into account, as we are all individuals, before making a decision, if they have to, on the way forward.
However if you need to speak to the Blood Cancer Support line their number is 0808 2080 888.
That might be to talk about available trials.
Then you ask if it is normal/natural that he is scared and very nervous and I am not medical but I would say yes, definitely,
I am also encouraged that he is being honest and showing his feelings to you and not hiding them. I think it is far healthier.
I am making a presumption here but perhaps you are feeling the same?
Perhaps even you might share how you are both feeling together and that you are there for him.
Personally I found it was really annoying when I has feeling the same as your son, but quite a bit older, when people told me that it was going to be alright and tried to negate my feelings. I just went into myself and my anger boiled inside me.
Please do keep posting how you are and what is going on. I have found this is the one place I can say how it really is for me.
Look after yourselves and spoil yourselves

[Duncan]

Hello there @tony9, welcome to the forum. I’m sorry you have reason to be here but I’m glad you found us.

Your poor son being diagnosed with not one but two of these blood cancers, and at such a young age. And poor you going through it with him. What a lot of shock I imagine is being felt.

I was diagnosed last year with a different but related Myeloproliferative neoplasms (MPN) to your son’s MF, but my treatment is likely very different and like @Erica said it’s best to take medical questions to the specialists. Even with the same blood cancers, those of us with them will have individual treatments based on our ages, previous related health issues, and other diagnostic stuff. Best to check with your son’s haematologist.

Perhaps at this early stage your son might like to read this great Blood Cancer UK information for young adults? Blood cancer and young adults | Blood Cancer UK

Here’s up-to-date informations about Acute myeloid leukaemia (AML): Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK

And here’s information about Myelofibrosis (MF): Myelofibrosis (MF) | Blood Cancer UK

One bit of advice I’d strongly offer at this early, worrying stage is to keep away from googling all this. When I was first diagnosed with Polycythaemia vera (PV) I found information online from random searches tended to show old and inaccurate data. Go straight to good cancer organisations for current and accurate information.

Perhaps your son would like to join the forum? There are plenty of folks here who have lived with Acute myeloid leukaemia (AML) and MF for many years and will have invaluable advice. Just a thought.

In the meantime, I’d say it could help for your son and you to write down all your queries and worries and worst case scenarios and I bet his haematologist will be able to answer with facts. I find it reassuring when my haematologist can share their clinical advice and good old facts about treatments.

You can also call Blood Cancer UK and speak to the expert nurses, they’re a really amazing resource of first-hand knowledge, and really lovely too. Call on 0808 2080 888 (Option 1) to speak to one of the Support Service Nurses in confidence.

And finally, I second @Erica’s suggestion of spoiling yourselves! What a lot of horrible news your son and you and wider family are dealing with. Time to treat yourselves to something relaxing and distracting, I’d say.

Do keep us posted how you’re getting on, @tony9.

[Heidi-J-BloodCancerUK]

Dear @tony9,
Welcome to the forum although I am sorry for the reasons that you find yourself here.
We wouldn’t be able to comment on the next stage if remission is not achieved this time as it very much differs for each individual. I would encourage you to adopt a one day at a time approach at the moment, although I know its easier said then done. Does your son have a Clinical Nurse Specialist (CNS)? You could always reach out to them and have a chat about this.

I am sorry your son is struggling at the moment, his whole life has been turned upside down in recent months and he must be on a real roller-coaster of emotions. (You all must be). Please do let the treating team know how he is feeling, there might be some support in the hospital which could help. Can I ask, is he being treated in an adult service? Or adolescent? There are often teenage and young adult facilities/nurses (TYA) in hospitals who can help provide emotional and practical support. We can help you navigate this if it would be helpful? You are very welcome to call us to talk things through, we would be very happy to support you and your family through this. Our support line is 0808 208 0888.
Take good care,
Heidi J (Support Services Nurse)

[Toadmum]

So sorry to hear about your son’s experience. My husband is 33 now and was diagnosed late in 2023 with Acute myeloid leukaemia (AML), with 2 challenging mutations.

Induction chemo did not get him into remission but FLAG IDA did so hang in there. After this he had a round of FLAG no ida and then bridging chemo. We expected he would get his stem cell transplant in March however this was delayed. With this in mind, he had two rounds of aza/ven chemo as an out patient and then got his transplant a few weeks ago.

He has been doing well, so hang in there.

[Toadmum]

Just to add, feeling scared and nervous is so normal. One day or hour or moment at a time - for him and for you. Maggies and similar charities are also helpful. It might also be possible for his medical team to put him in touch with other patients who have been through their treatment and can provide a listening ear.