I was diagnosed with APML in December. I'm having twice weekly arsenic in hospital, had 2 bone marrow biopsies but won't find out if the treatment is working until my appointment with the consultants on 9th February. I feel like I am in limbo. I also have a Hickman line and I am really struggling with this. I hate how it looks and feels. I'm just feeling quite low and chatting with others that understand may be helpful x
Hi APML 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 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 know this journey rather well.
I had two Hickman Lines for my two Stem Cell Transplants, I can understand how you feel about the line but it’s a necessary evil but in the long run makes treatment much easier.
Let's look for some of the group members to pick up on your post. There actually have been a few new members join recently so why not click on the AML Group title and this will bring up all the posts. Have a look at them and as always you can hit reply to any post and see if the member is still using the community.
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 few folks with AML in it so worth checking.
Always around to help more or just to chat
