Blastic Plasmacytoid Dendritic Cell Neoplasm

Aww that's great John I am glad you are doing well my dad is a mystery he's doing good without treatment his markers on his white blood cells are low but nothing to drastic he starts chemo end of this month his skin lesions have skrinked and his lumps are going down it's just crazy thanks for getting back to me and have a lovely Christmas with your family all the best keep me.up to date please 

Hey John how are you doing? Did you have treatment with tagraxofusp? I've just been diagnosed and am just looking to connect with others because it's so rare it feels so isolating.

Hope you're well

Still doing OK thanks. Sorry to hear about your diagnosis. I am now 13 months into my diagnosis so am now on my maintenance cycles, so once every 4 months I have intravenous chemo (vincristin), and the rest of the time on daily chemo tablets - mercaptopurine. Haven't heard of the drug you are on. Also take methotrexate weekly, aciclovir daily plus anti sickness when I need them. Mentally I feel great and am able to continue with my life. Physically, I have a lack of energy, so know that when I do something there may be a time I need to rest to recover. I feel so lucky that I have a wonderful wife who is being an absolute rock for me. Don't feel isolated,sweetheart. I have found that when my mind focuses on the disease rather than life, I have a mental conversation with myself and give myself a virtual kick up the backside to remind myself that the days/weeks/months that I have left are for living. If all else fails, I write my feelings down, and then throw them away once finished.Works for me. On a lighter side, I now have curly hair - my chemo curl. I wish you well Beckilu22. Stay in touch

Hi guys. Been some time since I have been on this forum. I am now 3 years in to a 1-2 year prognosis. My maintenance phase has now concluded and in a couple of weeks will be drug free. Wishing the best for all with this horrible cancer. 

Hi John70 good to hear from you, wishing you many more years freedom.

Hi all, I was diagnosed with BPDCN in May 2022,  I had no problems with it , thank god, no tiredness or no sickness, a few lumps and skin discolours was all, I think because it was caught early, ime in remission since August 2022 now, I had to have a bone marrow transplant in November 22, which didnt go well, ime still in the recovery process from it, but ime here to help, because it is such a rare disease, I am from Northern Ireland, and only the 2nd case ever diagnosed here, it can be a lonely place to be and you do feel isolated with it,because nobody knows much about it.

Hi again Mickeypops and good to see you posting in the group.

The SCT journey is most certainly a marathon and I can appreciate 2 year post SCT journey as I was exactly the same….. but I am over 8 years out from my second Allo SCT and doing great - it can be done.

Hi Mike, good to hear from you again, things haven't been very good this last 15 months since my transplant, due to complcations, but we're coming out the other side of it hopefully, I hope to post a bit more in the future, but it certainly is a marathon and not a sprint.

Hope you're still doing well John

Ah we're transplant buddies, mine was in Nov 22 as well! I was diagnosed in the April, took 3 different types of chemo to reach remission and then went on to transplant. 

It certainly is a marathon. I have the added joy as a woman it put me into the menopause which at 35 brings its own wonderful bag of stuff. But generally my recovery has gone well. The worst is the exhaustion still. 

How are you doing, whats been hindering your recovery? Have you had your vaccines?