I have just been diagnosed with bpdcn cancer. I am 82 and because of my age will not be offered chemotherapy. At the moment I feel well apart from a bit of tiredness and wondered if anyone had the same diagnosis. It would be helpful to hear from somebody who has bpdcn to find out what is likely to happen in the future. The prognosis I have been given is 6 to 12 weeks
Hi Bilton and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your diagnosis and prognosis.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Blastic plasmacytoid dendritic cell neoplasm (BPDCN) but I have been on my journey with 2 very rare types of Non Hodgkin's Lymphoma for many years.
You may already know that BPDCN is also a very rare, fast-growing type of Leukaemia........ I did a search of the Community and did not find any other mention of this condition but thats not to say that someone my be looking in with the same diagnosis.
You may want to check out Leukaemia Care UK who are the UKs main Leukaemia Charity who run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444.... although it is the holiday session so the office may be closed at the moment.
You may want to join and post in our dedicated Living with incurable cancer - incurable patients only support group as this will connect you with a wider range of people from various cancer types who are navigating the same journey as yourself.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides 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 3 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.
Do get back to me if you need further help navigating the community or just want to chat ((hugs))
