Hi all. This is the first time I've ever used a forum or even reached out to anyone for support.
We have been on a 6 year battle with two relapses, two failed STEM cell transplants and a new diagnosis of ALL.
My partner has been three lots of aggressive chemotherapy over a 6 year period and now has been left battered, with no whites, no neutrophils (after a failed donor transplant) and now an Adenovirus which is well and truly embedded - with the antibiotics not doing much in the way of shifting it.
I'm losing hope of a positive outcome and the blows just keep coming. Any help, words of wisdom or successful outcome experiences would be greatly appreciated.
Thank you for your time
HI CSKb8abe9 and welcome to this corner of the Community although I am sorry to hear about journey. I am Mike and I help out around our various Blood Cancer groups.
I don’t have Acute Lymphoblastic Leukaemia (ALL) but I was diagnosed way back in 1999 at 43 with my first type of rare (8 in a million) incurable T-Cell Non Hodgkin’s Lymphoma then in late 2013 a second aggressive, also rare (4 in a million) T-Cell Non Hodgkin’s Lymphoma arrived took me to Stage 4a so I do appreciate the challenges of this journey rather well.
Especially as I have had 2 Allograft (donor) Stem Cell Transplants…. the first Allo SCT was in June 2014 and I was told it had failed on Christmas Eve 2014……. I went back in Oct 2015 for my second Allo SCT and remission was eventually achieved in Sep 2016….. and I remain in remission to this day.
Over the years helping on this community but also with Lymphoma Action I am not aware of seeing anyone who has been in the same position but let’s see if anyone picks up on your post.
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, the one I attend does have a person with ALL in it so worth checking.
Always around to help more or just to chat.
