[Wf mom]

Plasma cell leukemia

by Wf mom on Tue Dec 02, 2014 11:03 pm

I see there are forums for many of the variations of myeloma, but none for plasma cell leukemia, which is in the myeloma family as well. Yes, it is extremely rare - which makes a forum even more important and valuable to the patients and caregivers who struggle to find any information.

[016Pink]

Re: Plasma cell leukemia

by 016Pink on Sat Feb 07, 2015 4:54 pm

I agree. My mother had PCL and, unfortunately, has passed away. However, I have never met anyone else who has, or has had, this form of leukemia. A forum would have been very helpful and, even now, would be of interest to see what strides are being made and what treatment is being given.

[Jenny1960]

Re: Plasma cell leukemia

by Jenny1960 on Wed Feb 11, 2015 6:13 am

I too have been diagnosed with plasma cell leukemia in October 2014, aged 54, I have had 4 months of chemo of thalidomide, Velcade and dexamethasone and am just about to have auto stem cell transplant followed by donor transplant in a couple of months, sort of a tandem procedure.

Before October, the only symptom I had were pains in the shoulders and hip, so it all came as a complete shock. The first diagnosis was multiple myeloma but was quickly changed to PCL after bone barrow biopsy. My kidneys had been destroyed and I had to go onto dialysis for a short while but, amazingly enough, the kidneys recovered after being on chemo for a month or so and seem fine now!

PCL seems to be rare and indeed I am being treated in a big London hospital and am the only patient at present with PCL.

It will be nice to speak to others in the same situation.