Amyloidosis, I to am fighting this rare blood disorder

[MisUnruly]

I can understand what Robert is going thru. I have read his recent post and am glad to see he is home and resting comfortably.

 

I was also treated with thalidamide while awaiting my stem cell transplant at the University of Michigan. And like Robert said, not all treatments work for all people. It actually reduced the function of my heart, from a 50% ejection fraction to a >40%, which made me not eligible for the stem cell transplant. Now, I only have 1% of my bone marrow plasma affected, but I have multiple organ involvement. Heart, kidneys, stomach, intestinal tract and nerve damage. All of this means I have had this for a long time with only 1% in my bone marrow.

 

I am just starting my second dose of an intermediate dose of chemo, taken 4 days a month, which is all my heart can handle. We expect that this will go for 6 months before any real results are seen, positive or negative. They are checking the light chains in the urine every month, 2 weeks after treatments, but I have only gone thru one treatment so far. If I make it to the 6 month mark, they will continue for another 6 months and check the function of the heart again. If the heart has not improved, then I will be a canidate for a heart transplant and a bone marrow transplant at that time. If there has been an improvement in the function of the heart, they expect me to continue with the chemo to the 18 month mark, then re-evaluate things at that point.

 

I too plan on living for a long time, and hope to get back to a place where I can return to work in some sort of capacity. I plan on snorkeling in mexico again in the next couple years!

 

I wish Robert all the best in his recovery from the stem cell transplant, and would love to discuss this all with him at some point.

 

The Unruly One