Blastic Plasmacytoid Dendritic Cell Neoplasm

FormerMember
FormerMember
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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 The information on the internet is sparse and out of date.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

  • Hello Kerry, 

    i have to say I haven't heard of this, but am thrilled your husband is doing so well! Cord blood cells seem a great choice as they seem to have less risks with all those hidden viruses like CMV. 

    I will go and look things up.....for interest.......but then as he is 100% donor now, I probably don't need to!

    infections are a pain, our daughter had so much chemo in the past that she still has low immune levels, and after 2bouts of pneumonia last winter they decided to give her immunoglobulin monthly. It has certainly helped so far this winter ( she's over 3 years post allo) 

    hugs xxx

    Moomy

  • FormerMember
    FormerMember in reply to moomy

    Hi moomy,

    Thank you for your reply. Ironically my husband had CMV. He is currently in hospital with a respiratory virus. 

    The info on the internet about his disease is very scary, my husbands doctors right from the start warned us not to look. I heeded their warning, until he got the result if 100% donor. Then I suppose intrigue got the better of me. We have no idea what the future has in store for us. I am so grateful for the transplant as it has undoubtably saved his life. I think that because it was this time last year when my husband first stared feeling ill and tired, it brings it all back. Our lives have changed forever.

    Thanks for reading and replying.

    Kerry

  • Hi Kerry, 

    yes, sometimes looking things up scares you even more, but with chimerism of 100% then surely the complex disease he had is gone. I really hope that infection improves and he is soon home again. Always a worry! 

    If our daughter is anything to go by, plus the experiences of those who have gone before, once those first years are gone and our carees are still coping, then things hopefully get easier year by year. 

    CMV can be a pest in the early times, but they do seem to manage those levels really quickly and well. 

     I still marvel at how much these transplant doctors know and yet admit that there is still an art involved with their medicine. Daughter has periodic GvHD in her gut but they have said that unless they do invasive tests and still find nothing, there is no proof, therefore they just help her manage it when and if it occurs! 

    Keep posting, if there are any hiccups that any of us can help with, of course this is the place to ask! 

    Hugs xxx

    Moomy

  • I have been similarly diagnosed. My consultant (in Leicester) tells me that I am only the 5th case she has come across in the 10 years she has worked there. Had a tumor removed 3 weeks ago, and tests have shown it is not in my bone marrow or shows in a subsequent blood sample. However, I have a number of lesions appeared on my chest and back and have a further appointment with my consultant this Thursday. I am guessing that will lead to my first chemo. I have to say, the hospital have been brilliant with me so far and arranged things really quickly. Hope your husband is doing well.

  • Hi  and welcome to this corner of the Community.

    You will see that this thread is over 6 years old but let’s see if  is still looking in.

    Always around to help our was best as I can.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi there do you have bpdcn ? If so how are you getting on are you doing ok? 

  • Hi Kerry my dad has been recently diagnosed with bpdcn we are absolutely heartbroken, how is your husband doing is he still ok and how many years has been cancer free please 

  • Hi Danielle. I have BPDN and have undergone treatment over the last 9 months. I am now in the maintenance stage, where daily chemo tablets keep me functioning. I look as strong as ever, but energy levels are really low . Sorry to hear about your dad. It really is a rare blood cancer and local GPs have said that they have never heard of it. The good news is that by following the treatment plan, I am really enjoying my life and intend to carry on doing so. I wish your father well.

  • Hi John thank you for replying my dad hasn't started treatment yet will be the 29th of December he starts chemo he's doing really well just now the doctors are surprised considering he hasn't starting any treatment. What treatment plan have you been taken? How are you feeling within yourself ? Are you in remission? 

  • It is a mix of different chemo, steroids and other drugs that basically protect you against the treatment. Mentally, I feel fine. Physically, tired all of the time, but keep pushing myself. Still no sign of the cancer in my blood tests  it seems to hide somewhere. You could call it remission, I just think of it as extra time to enjoy life with my wife and family. Hope you can have a good Christmas