Hi there I am new to this recently my dad has been diagnosed very early with this cancer we know nothing about he's completely fine just his white blood cells a bit low but everything else coming back normal has anyone or anyone going through this same disease and can give me some positive outcomes please I am worrying myself sick please it's the not knowing he's only 54 and never had any health conditions until he found a lump on his neck
Hi and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our various blood cancer groups.
I don’t have Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN for short) but was diagnosed in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my blood cancer ‘type’ is different I have experienced ‘the’ treatment journey but not necessarily the exact same drug mix.
Being diagnosed with a rare blood cancer can be very challenging in the early days but the more you get to understand the condition the more the noise between your ears will calm down.
The link above is taken from the www.leukaemiacare.org.uk site so worth a look.
We do actually have a newish group for these rare blood cancer so do join the group by hitting the following link DS/MPN/ET/PV/myelofibrosis (MF)
Once the above page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New (Computers) or + (Mobile Devices). You will then see a dropdown menu so hit ‘Start a Discussion in New here, say hello’ and you are ready to go.
You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.
I have talked with folks with BPDCN on this community specifically in our Stem cell transplant group (I have had two) and at our local Maggie's Centre monthly Heamatology Support group.
You may want to put in Blastic Plasmacytoid Dendritic Cell Neoplasm and/or BPDCN into the search tool near the top and look at the old posts and as always you can hit Reply and see if the members are still looking into the community.
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