Hi everyone,
Recently diagnosed with POEMS disease (plasma cell infiltration greater than 10% in bone marrow). I have started DVrd chemo and will have autologous stem cell transplant in a few months. Has anyone else been diagnosed with POEMS? Apologies I know this is a myeloma forum
Regards,
A
Hi AideenO26and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your diagnosis.
I am Mike and I help out around our various Blood Cancer groups.
I don’t have Myeloma or POEMS but I have been on my journey for over 25 years when I was diagnosed way back in 1999 at 43 with a very rare (8 in a million) incurable but treatable type T-Cell Low-Grade Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare fast growing type of T-Cell High-Grade Non Hodgkin’s Lymphoma was presenting….. so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
More so as I have been through 2 Allograft (donor) Stem Cell Transplants (June 2014 then Oct 2015) and I have been in remission since.
I did search the site for POEMS but did not get any hits….. but that not to say that there is someone looking in. But a few members in this group have had DVrd.
As for Autologous SCT there have been a number in this group who have been through an Auto SCT as well as others on our Stem Cell Transplant group.
Always around to chat.
