Hi,
my mother 57 has recently been diagnosed with BPDCN and begins treatment next week. It would be good to hear other peoples stories good or bad with treatment - chemo - stem cell transplant and so forth. Any tips or advice to get through this and support I could provide myself to improve the situation I am all ears. I understand this type of cancer is extremely rare so it’s hard to find people in similar circumstances particularly so early in the journey. But even if you’ve had SCT your experience on this would be helpful. I want to ensure my mum that there is a way through this even if the road is long and complicated. Thanks.
Hi Coolie and a warm welcome to the Community although I am sorry to see you joining us.
I am Mike and I help out around our various blood cancer groups.
I don’t have BPDCN but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well…….. especially as I have had 2 Allo (donor) Stem Cell Transplants (SCT) (June 2014 then in Oct 2015)
I see you have found some of the few posts from people with BPDCN in a few of our support groups.……
As for the SCT process I do see you have joined our dedicated Stem Cell Transplant support group. This will be a good place to talk with others who have navigated SCT.
We also have our rare blood cancers MDS/MPN/ET/PV/myelofibrosis (MF) support group
I will keep an eye open for you in the SCT group. The best way to connect in with the group please click on the link below…….
…… then once the group page opens you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
