Plasma cell Leukemia

[Mkmund]

What is the treatment for Plasma cell Leukemia?

[Hidden]

i looked at your other answer posts. I have b-pll which is another rare cll subset. With so few of us having these rare cll's there is also very little info-and none is accurate. Most info is and statistics are BEFORE novel drugs existed. Also there will be no novel drug with an actual indication for you because too few to do study for it.

I suspect you will be treated the same way as other rare leukemias. You will be treated as ULTRA HIGH RISK cll. Thats how my doctor treats me. Rushing to transplants was BEFORE novel drugs existed.

[Mkmund in reply to Hidden]

Thank you

[cllady01 Former Volunteer]

MkMund, so sorry you are having to search for help with PCL. We are aware of there being a connection to CLL in Secondary Plasma Cell Leukemia, and the treatment then is a management related Multiple Myeloma Leukemia, rather than CLL.

There are profile deletions that are the same as in CLL and the delineations of the Leukemias is a very complex situation.

Our focus is on CLL and all of our members are struggling to retain information for our particular brand of CLL, since they, too are very complicated in relation to diagnosis and to treatment.

You might find the following sites of help to you, as it is specific to Plasma Cell Leukemia both Primary and Secondary--I hope so.

patientslikeme.com/conditio...

smartpatients.com/forums/mu...

Wishing you the best of oversite and treatments in your palliative care.

[Jm954 Administrator]

Please don't get too down, plasma cell leukaemia is definitely treatable. Plasma cells normally stay in the bone marrow but you have a form of myeloma in which they are spilling out into the blood called plasma cell leukaemia.

There are lots of factors that will influence how you respond to treatment including the paraprotein levels, your kidney function and degree of bone marrow infiltration but in recent years the use of Velcade, Lenalidomide and steroids have transformed patient's lives. It's usual to then go on to have an auto stem cell transplant which can give you years of treatment free remission. If you get a good long remission then it's possible to repeat the transplant and if that fails, there are other newer drugs such as daratumumab or more intensive chemotherapy.

You might find this charity helpful as much of the myeloma information will apply to you: myeloma.org.uk/ and here is an info sheet on Plasma Cell Leukaemia: myeloma.org.uk/wp-content/u...

Wishing you all the best

Jackie