Completely healthy 53 yr old before and after the ATRA and Arsenic treatment. The 40 day stay initially in the hospital was brutal, had to do it all over again when it relapsed. The Acute promyelocytic leukaemia (APL)/RARA by PCR came back negative during initial remission and is negative again 1 month after relapse and treatment. Doctors are unsure what to do at this point and have suggested an autologous stem cell transplant because they do not know what else to do. With healthy, normal cells at this point, I don’t see the point of going through the transplant. Still doing the months of consolidation therapy right now. So little information on this leukemia. I am in the US and receiving treatment from a top notch cancer hospital. Would love any information anyone has on a relapse of Acute promyelocytic leukaemia (APL).
hi @Medtechls and welcome to the site.
Given the time difference, I guess the Blood Cancer UK site fairies and the volunteer pixies are tucked up in bed hiding from the snow or the ice forming on the windows, so as I can not sleep(joys of Polycythaemia vera (PV)) may I welcome you to the site.
A lot of highlight, right click and hit google search on reading your post, so outside of my remit but is some site notes on this condition with some ideas for going forward.
I know the US health system is somewhat different from here in the UK, but I am sure those in the know will try and find you some info as soon as the third cup of builders tea or caffeine kicks in.
Hope you find some answers on this journey of yours
Hi @Medtechls,
A very big welcome to our forum. I am sorry to hear what you are going through just now & I hope you are coping okay?
The circumstances around your relapse and treatment decisions sound difficult & conflicting for you so it’s understandable you’re reaching out to find others with similar experiences.
I hope you are able to receive some support from other forum users who have experienced relapsed Acute promyelocytic leukaemia (APL). In case it’s helpful to know more about UK support services, I have linked here to a fellow organisation who hold information & support for those affected by Acute promyelocytic leukaemia (APL)- Acute Promyelocytic Leukaemia (APL) | Leukaemia Care
It is very likely you are well aware of the work & support a little closer to home, that Leukaemia & Lymphoma Society offer but i did want to include their webpage information around peer support as this may be useful- Peer-to-Peer Support | Leukemia and Lymphoma Society (lls.org).
Please do also know that our helpline is very much here for you should you prefer to talk things through- +44808 2080 888.
Best Wishes, Lauran
Hi @Medtechls a great big welcome to our UK forum and as we have mentioned the UK medical system can work in different ways medically and treatment wise.
I was also a very healthy 53 yr old when I was diagnosed, with a different blood cancer, and I wrote the news that I had just been diagnosed in a Christmas card to a friend in Los Angeles and when I received her card she had also just been diagnosed with the same blood cancer as me. She was immediately treated, I wasn’t. That was 20 yrs ago and we are both going strong.
However you have really gone through the mill and now have a dilemma to consider.
I am so glad that you are under a top notch cancer hospital, that really helps, however I wonder if you have similar emotional, psychological, physical and practicalities many of us share?
I hope others can share their experiences.
Really look after yourself and take lots of special care.