Hi,
I’m writing for my aunt who has just found out that her AML have recurred after 25 years in remission. She had her own stem cell transplant 25 years ago and successful remission.
She’s low energy right now so I’m writing for her.
She’s currently exploring treatment options and is keen to hear of anyone who has experienced success with venetoclax and / or immunotherapy. As she’s older than before so she is wanting to explore the less severe options first.
Thank you
Hi CazzaB and welcome to this corner of the Community although I am always sorry to see folks joining us and so sorry to hear about your aunts relapse after being 25 years out from Stem Cell Transplant.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Acute Myeloid Leukaemia (AML) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well especially as I have had 2 Allo (donor) Stem Cell Transplants that last one back in Oct 2015
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.
It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provide 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
