I have MM and currently in remission after stem cell transplant in May 2010. I have just been told by my cardiologist that I may have amyloidosis (of the heart). What I thought was a routine visit, as he was treating me for high blood pressure while hospitalised, ended up being this awful news. Off to have another echo on wednesday. It was a shock as I had never heard of this condition but reading up evidently 30% of MM patients end up with this? Anyone else with both these conditions?

I was sorry to hear that there is a possibility that you know have AL amyloidosis after apparently doing so well from Multiple myeloma. I can imagine what a shock this has been for you and your family.
Approximately 20 to 25% of people with MM will be diagnosed with AL amyloidosis when diagnosed with MM or develop it later.

I coordinate amyloidosis services in Queensland for the LeukaemiaFoundation and know many patients in Queensland and around Australia. Quite a number of these patients have both AL amyloidosis and MM. With much better assessment of organ damage and the new treatments now available such as Thalidomide, Revlimid and Velcade used for both AL amyloidosis and MM patients, outcomes for patents with both diseases has improved greatly and I am in touch with a number of patients who are leading active lives in part or full remission.

In Queensland we run support luncheons specifically for Amyloidosis patients and those that have both diseases where they can chat with each other and from time to time hear a guest speaker. The next luncheon is on August 17th. The other States have a variety of education and support programs also. I suggest you contact Leukaemia Foundation office in the state where you live for further information. If I can be of help please contact LFQ on 38403844 and ask for me.

With best wishes Pat Neely

thanks Pat, i will be in touch. I will be seeing my oncologist on wednesday and the cardiologist again next week, so should have something confirmed then? I am in Brisbane, so would be very interested in the next luncheon in August. Will talk to you soon regards Dale

Thanks Dale
I hope your appointments go well and I look forward to hearing from you.

If you cannot get me on the Leukamia Foundation number you can call me on 33786361 after 4-30 in the afternoon.

With best wishes

Pat