[HeathParticipant]

Hi Ellen,

Do you think you could add Plasma Cell Leukaemia to the list of related conditions? It is a very rare distant relative of MM and my wife suffered it for over 8 years (some sort of record).Treatment is the same as for MM
in the absence of deep research into the condition. I am happy to share my
knowledge of this "orphan". Heath

[HeathParticipant]

Thank you, you are kind.I am not an expert,but I made sure both Sue and I
understood what was happening,why etc. We had brilliant medical teams who
always explained what was what.

[HeathParticipant]

Dear Gill,
Thank you for your kind posting.

[HeathParticipant]

Hello. I just wanted to say that Myeloma has a very nasty,distant relative
known as Plasma Cell Leukaemia.Thankfully it is rare (one case a week in UK)but can be highly agressive with a very poor prognosis.
There is little information or research – no doubt because it is so rare.
My wife Sue died of it this April after eight and a half years,which is way beyond the mean rate (22 months I believe)and according to her consultant exceeded any other case he knew of by over three years.
Her treatment was the same as for Myeloma and an autologous BMT put her into remissiom for six years! One complication was that PCL caused complete kidney failure in the first three months so Sue was on home dialysis for the duration.Her tenacity and our hospital's brilliance were
the major factors in Sue's astonishing journey.
As I say there is so little info.(including this web site-no offence)on PCL. I will be quite happy to discuss with anyone affected.
Heath

[Author]

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