Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN)

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Hi Everybody.

I am new to the group, I was diagnosed with a very rare type of cancer called Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) in May 2022

I am from Northern Ireland & was told I am only the 2nd case of it in NI, there's a few more rare stastics with it, I can't find any specific group for it but its leukaemia linked, even a lot of the medical staff that have been looking after me haven't even heard of it, I was wondering if anybody on here has? 

From Mickypops. 

  • Hi and welcome to the group  

    I have a rare NHL so understand in part, but let’s look for anyone to pick up on your post who has first hand experience.

    You may want to join and post in our MDS/MPN/ET/PV/myelofibrosis (MF) group for rare blood cancer as well.

    You can also do a total community search by putting Plasmacytoid Dendritic Cell Neoplasm  or BPDCN into the site search Mag tool near the top, select ‘anywhere’ and this will bring up any older posts and as always you can hit reply and see if the members are still using the site.

    Happy to chat more.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Highlander.

    Thank you for the welcome.

    I put BPDCN into the search box and nothing came up, it was the first thing i done when I joined, but thank you for the advice, I will have a look at the group you suggested and see what comes up.

    Many Thanks

    Michael/Mickypops.

  • The challenges of living with a rare blood cancer, I know this very well.

    I see you have also joined our Stem Cell Transplant (SCT) group…… you will see for my story (below) that two Allo (donor) SCTs did the job for me with me now over 7 years out and still in remission.

    All the very best.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Well done you for being seven years in, Where is the best place to put up my story please ? It might help somebody along the line as in it being so rare.

    All the best

    Mickypops.

  • Just follow the following link below

    Click to see how to add details to your profile

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hey Mickypops 

    I had bpdcn too. I was diagnosed a year ago this week and am now 5 months post haplo stem cell transplant. 21st April is 6 months cancer free for me. 

    Feel free to message me if you'd like to chat. It's a pretty lonely place when it's such a rare cancer. I've connected with a few people over in the USA who have it and a couple in the UK. 

    All the best Becki 

  • Hi Mickeypops,

    sorry just noticed your post as was not a member of this group. I too had Bpdcn was diagnosed in Jan 2020 had various rounds of chemo to keep it at bay, then was advised to have an Allo stem cell transplant as is a type of blood cancer that likes to hide away and without a donor immune system it may easily come back. So I had my Allo sct in May 2021 and luckily been in remission since. Unfortunately I am suffering from gvhd as a result of the Allo sct but elements are slightly improving. 

  • Hi Becky.

    Sorry I haven't replied to you sooner, my email has been playing up and I only saw your email this morning, Sorry to hear that you you have BPDCN as well, its a very rare cancer and not many people have heard of it, let alone having it, I will be diagnosed a year now on the 24th May, I have been cancer free since Aug 22, and got a bone marrow transplant on 17th Nov 22, that went pear shape and nothing only complications since that, for I took an infection called HLH, which I still have, its all very complicated with my case, I just finished medication for the HLH 2 weeks ago, and still have the infection,  we have to wait until my Heamagloban reaches 120, its 115 today, thyre going to take blood from me to reduce my iron and hopefully that will reduce my infection, it is a very lonely place to be Becki, thyres nobody who can relate with you, and sometimes even the doctors struggle to understand it sometimes as well, I'm glad to hear that your 5 months cancer free now Heart eyes 

  • Hi Hardtimes

    Sorry to hear that you have Gvhd from your SCT, but i'm glad to hear its improving, Its a depressing place to be when you get complications from the SCT, i got HLH from mine and killed my donor bone marrow, but miracalously some of my bone marrow survived the chemo and started on its own again, my case is all very complicated and there's nothing straight forward with it.

  • Hi Mickeypops,

    Thanks for replying. You are right it can be quite a lonely journey, but I think this can also be down to the type of person we are. Sorry your 1st bone marrow transplant or stem cell transplant turned into a bit of a mess and you had complications. As you know it is a horrible experience with mucousitus etc I got sepsis during mine. It sounds like you will probably have to have another sct when your body has recovered to ensure you stay in remission. Most people seem to suffer with gvhd after to some degree and this is what I am suffering with at the moment. Hopefully over time it will get better. If you can what I advise is to exercise as much as you can and eat as healthily as possible to give your body te strength it needs to fight. My thoughts are with you and hope all goes well. Please feel free to ask me questions about anything and I will try and answer. Do remember everybody’s journey is different and progress also differs from person to person.