Hi. My husband has had polycythemia since 2015 and now diagnosed via a bone marrow biopsy 4% AML and the p53 gene.
He has to have another bone marrow biopsie we are awaiting an appointment as just spoken to the consultant on weds with his results from first biopsy in April.
Would like to know anyone else with this condition and what treatments have they had please. As we want some sort of guideline of how these procedures work.
Thankyou
Hi Elb and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups. I don’t have AML but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I understand this journey rather well.
Someone being diagnosed with a blood cancer can be such a shock and it does take time to get the best treatment in place and for the family to get their heads in order to be able to see the light in the dark forest…… but you will get there.
There have been a few group members active lately so let’s see them pick up on your post.
You can look through the various discussion threads in the group by hitting THIS LINK and as always you can hit reply on the thread to see if the member is still using the site.
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. 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.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
For good information do check out Leukaemia Care UK on 08088 010 444 who produce very good information and various support platforms including their Buddy Scheme
Always around to help more or just to chat
