Blastic Plasmacytoid Dendritic Cell Neoplasm

FormerMember over 10 years ago

31 replies
13 subscribers
9457 views

Hi,

my husband was diagnosed with the above blood cancer in January of this year. It is an extremely rare disease. Following 3 rounds of chemo he undertook a donor stem cell transplant (umbilical cord) in May. He is disease free and 100% donor which is amazingly fabulous. He has suffered with some GVHD and various infections/viruses.

I wondered whether anyone had any experience of this disease? The information on the internet is sparse and out of date. Apparently it has some characteristics of AML, not even sure what that means.

Thank you for reading,

Kerry

Beckilu22 7 months ago in reply to Coolie

Hey Coolie,

I was stubborn after my stint in icu for sepsis and kidney failure. Was home 3 days after being transferred back to the ward lol make sure there's a follow up for you with the ICU muscular skeletal team. It's very common to have joint issues after.

I've just had my 2 year pet scan and its come back all clear so I'm 25 months in remission now!

My sct went really smoothly really. Long term side effects for me have been fatigue and brain fog as the worst. There's lots that can happen during recovery. The docs have to warn you of the worst. It is very daunting. There will be really low few months after it. The transplant is actually the easy bit, its the recovery afterwards that gets almost everyone. It takes so much longer than 100 days and appointments dont stop and then the vaccines kick your butt. It really is like 18 months to 2 years.

The more you move and the more you eat protein then the better recovery is likely to go. My sister was my donor a 5/10 direct match.

It's hard to eat after. Lots of meal replacement shakes and high calorie food is your friend.

Some days its a minute at a time. Have you got care support for after sct?

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Blastic Plasmacytoid Dendritic Cell Neoplasm