Post BMT
My name is Keith and l have just joined the group .
l was diagnosed with AML in June 2017. After one round of chemo l developed and absese on my bowel and spleen . This lead to emergency surgery and l was left with a Stoma and Spleenectomy . I then had more chemo and a few months later a BMT in 2018 . I had my stoma finally reversed after a 3 year wait in 2021.This being l feel the end of my cancer journey . In October 2022 l started to develop bad gum bleeding and bruising for no reason . Also l dont clot if l cut myself and can bleed for hours . After lots of tests at Jimmys and also a specialist in Scarborough. The outcome is not diagnosed. Im told by my specialist this is common after BMT . Basically my blood Factor VII is unstable and this is the cause . I was wondering if anyone else has a similar experience. On a positive not l was 8 years in remission on the 1st July 2025 .
Best Answer
-
Hi Keith,
Welcome to the forum. As you'll be aware this is a space for patients, friends and families to share their experiences of treatment and beyond. I do not fall into one of these categories, I'm Rachel, Lead Nurse at Anthony Nolan and I occasionally contribute to the posts, particularly when there is something clinical raised, hence my reply to you today.
Thanks for sharing your experience, it sounds like it has been complicated but great to hear that you were able to get your stoma reversed and that you've had 8 years in remission following transplant
From the description you have given I believe you have developed Aquired Haemophilia A (AHA) following your transplant. This is an autoimmune condition where your immune system starts attacking a protein in your blood called Factor VIII (8) which can lead to problems with bleeding as Factor VIII is responsible for helping your blood to clot. This can occur as a result of many illnesses and even pregnancy but it is a known complication after stem cell transplant, though it isn't reported very commonly.
Diagnosis is important so then appropriate treatments and lifestyle changes can be made to reduce the risk of bleeding, so its great that you had all the investigations to understand what was causing your bleeding.
I've written this summary to help others who read your post, understand this complication and it may also help them to identify with the disorder if they have it or are experiencing similar issues. Sorry not to be able to offer any insight beyond this but hopefully others reading the thread may respond.
I hope you remain well and are able to manage the AHA without too much disruption to day to day life.
Best Wishes
Rachel
Answers
Thank you Rachel . But l wonder of l do have AHA why has my consultant left me undiagnosed. Is there test for AHA and such lifestyle chenges you mention .