My dad is 68 and has Acute myeloid leukaemia (AML). He went through intensive chemotherapy from May-September last year and was in remission but we have been told yesterday he has relapsed and the option is FLAG-IDA and possible stem cell although we’ve been told the chance of the stem cell working at this stage could be as low as 10%. My dad isn’t keen for the stem cell as he doesn’t want to be away from his family and wants to be with us which is why we initially rejected it. But the FLAG IDA is still an option to extend our time. He is worried that this chemotherapy will stop him from being able to do the things he loves but equally knows that it is his only option.
I’m looking for people who know about relapse treatment or have stories of doing clinical trials after relapse to share their stories in the hope it helps us to weigh up the pros and cons.
Hi @AnnaR thanks for posting on our forum.
It is a real dilemma for your dad and you all and you might have differing thoughts.
It is so difficult for family members as they are so powerless too
Personal experiences are so unique as we are all individuals with unique medical histories.
However I hope others will share their experiences
I attach the Blood Cancer UK information on clinical trials Clinical trials | Blood Cancer UK
If you are all thinking about a clinical trial I would suggest you talk to the Blood Cancer UK support line on 0808 2080 888 @AnnaR this is a space where you can really say how it is for you.
Look after yourselves and be very kind to yourselves
Hi @AnnaR so sorry to hear about your dad’s relapse, this must be incredibly frustrating and challenging for you all.
My husband is being treated currently for Acute myeloid leukaemia (AML), albeit refractory Acute myeloid leukaemia (AML) which did not go into remission until the second round, after a course of FLAG IDA. He is 32 and FLAG IDA is a very intense chemo regime with lots of side effects. However, it was worth it to us because he got into remission which is allowing him to get closer to stem cell. I know there are other patients of a similar age to your dad that we have met who have taken and been fine on FLAG IDA. I do think that his doctors would not recommend it as a treatment option if they did not feel he was fit enough to manage the treatment.
Perhaps you could consider sharing your concerns with his medical team who might be able to explain more clearly what to expect and what they hope this might do for your dad’s specific case.
@Toadmum I am so glad to hear the second round with FLAG IDA worked for your husband, and you are all a step closer. Sending love to you all.
Thank you so much for your reply it is really appreciated. Today has been a hard day but we have done lots of research and spoken to the medical team and are having a good chat about our options. It brings me hope and connection knowing there are others out there.
I know just what you mean - posting and reading on this forum has been so helpful in remembering that we are not alone on this journey. I think you make a good point - that you do have options, and that in itself is a glorious thing.
Sometimes when I’m having a bad day, I remember that I don’t technically have to do this. I know that sounds ridiculous, but I choose to walk this path with him and to show up, and when things feel too much I try to deploy tactics that can help me. Maybe this is something that could work for you.
I try a cup of tea, change of scenery, talking to someone, ticking off something on my to do list, spending some time doing something nice, remembering that today is just one day and that tomorrow is a new day.
You have got this. Please keep posting as you feel like it. It’s a privilege for us all to be a small part of your journey. I also found that expressing myself and documenting our experiences is helpful personally but I am sure that it will be helpful to others who might have to walk this path in the future.