Hello,
Firstly hello to all, sending best wishes.
Posting about a dear family member, of course understand how everyone is different but wondered if anyone has any experience in this situation.
My wonderful father in law was diagnosed with AML a few days before Christmas, he had pneumonia and was taken into hospital, bloods were taken which obviously showed really low levels, in turn a bone marrow biopsy was also completed, the hospital thought he had MDS but found out he had AML. He treatment consisted of 7 days of Azacitidine (Vidaza, Onureg) injections as well as taking Venetoclax for 28 days for a cycle then the cycle starts again. He had to come off Venetoclax at times as it made him ill (urology, bowel and abscess issues). He has blood transfusions every 2 weeks too.
after 4 months of treatment he had another biopsy and was told that the treatment hadn’t worked. My father in law asked for a couple more rounds as he truly believes that he can beat this. The consultant has agreed as he wants to respect patient wishes so agreed to 2 more rounds.
We are nearly at the end of those 2 rounds and I wonder what happens now? I understand everyone is different but I just can’t stop thinking what happens if treatment was to stop?
he is 84 but oh my was so fit and active and he is trying his best to be like that again. I can see he has lost a lot of weight and he isn’t like he was before but he is determined and I think a positive attitude is amazing but in my heart I just want to know about reality too. He is my hero!
sending love to all. Thanks for reading x
Hi loverainbows and welcome to this corner of the Community although I am always sorry to see folks joining us and I am especially sorry to hear about your father in law. I am Mike and I keep an eye on our various Blood Cancer groups.
I don’t have Acute Myeloid Leukaemia (AML) but I was diagnosed way back in 1999 at 43 with a very rare, incurable but treatable type of CTCL - NHL ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my blood cancer ‘type’ is different I do appreciate the challenges of this journey rather well.
Let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘AML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups most are online at the moment….. the one I attend does have a person with AML in it so worth checking.
Always around to help more or just to chat
