Hello

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))

Hi Bilton, I am sorry to hear of your diagnosis. I am 58 and was diagnosed with BPDCN in July 2024 and attempting recovery..  it has been very intense and hard on the body, infections, ICU visits to say the least so I can understand why chemo was not offered. In your case you’ve been given a prognosis which I am very sorry to hear but this takes away the constant hospital visits and will hopefully be far more peaceful for you and have your dignity throughout. From what I’ve discovered in communities and across various chats in terms of a prognosis journey, it’s not painful, starts with tiredness and gradually naturally become weaker in day to day, it’s not been known to effect you massively other than ill side effects, loss of appetite and so forth, if you have skin markings from the disease these can spread and become darker or begin developing and you may notice a change in your breathing and swollen lymph nodes - neck, armpits, crotch. It took me a long time to get my diagnosis and I was quite far into the disease it infected my bone marrow and found in fluid around my central nervous system so experienced a lot of the above but the side effects are all individual these however are common. The timing given to you could be underestimated, this cancer although aggressive is very unpredictable and hard to put a time on and I don’t think anyone knows really so you might surprise yourself! But I hope in this time you manage to find peace and acceptance. This life is cruel sometimes but I wish you well for the longest time possible and make sure you talk to people.