Multiple myeloma and AL Amyloidosis

I have it in my tongue, carpal tunnel, GI track and I have very bad sciatica every day, I think I have it in my nervous system.  
sorry for what I said, I’m very pleased they saved your life, I should’ve have said that. 

I still haven’t made my decision. 

had my monthly injection yesterday, feeling a bit rubbish today. 

best wishes 

I feel so hopeless for my father, 78 yo male, been healthy his entire life, no medications ever, nonetheless even getting a common cold. He has stage IV amyloidosis and it’s obvious this crept up on us and was not caught in time, even though he was under cardiologist care… multiple echocardiograms and needed a stent about last January or so. Then he was weak he didn’t look better after the stent, fatigued shortness of breath, after a few months he was referred to a CHF specialist where he was diagnosed with multiple myeloma and AL amyloidosis. He only had 10% Multiple Myeloma at the start of what they decided was the standard course of treatment, Dara + Velcade + Dex. Upon further inquiry I found out he has stage IV amyloidosis. So after receiving four rounds of Dara and then 2 rounds of Velcade he felt incredibly weak. Could barely walk, would fall over, had no strength, then was diagnosed with a UTI. I feel so bad for my father. I wish clinical trials were for him. Something to make the plaques in the heart reversed, I saw one being done but I guess it’s closed where they reshape the misfolded proteins and re fold them the correct way. Amazing. He’s in the ICU due to the UTI, on Midodrine and Bumex and Dopamine to lessen the fluids (he has edema in feet and legs), and to increase the blood pressure. His vitals have been looking better and the fluid in lower extremities has significantly decreased. He just is insanely fatigued. I do know the chemo stays in your body for a while, and I get he had the UTI but it was treated with Abx for 1 week in ICU.  
Some days are better than others in terms of his fatigue, but I feel bad for him. I wish this was caught sooner or I wish he started care elsewhere. But I don’t know what other options their really is if the standard of care worsened him. I feel so bad. If anyone had any advice for meds for the myeloma or amyloid don’t be shy to tell me your experience. 

Sanza,  you don`t have to say sorry for anything. I have been, where you are now. I know how rubbish you are feeling.

keep fighting!

hi dantheman,

I take spironolactone and bumetanide for the odema in the legs, haven`t had any swelling for many months now.

But he MUST limit his fluid intake to no more than 1.75 litres a day. Try to keep under that so the heart isn`t under too much strain. Chew starburst chews for the dry mouth (used to be called Opal Fruits when I was growing up!), this makes the saliva in the mouth but doesn`t increase fluid intake.

I always made the mistake of having 1 or 2 cups of tea too many!! lesson learnt.

I don`t know what part of the country you are in, so perhaps treatment is different. I go to the National Amyloidosis Centre in Hampstead.

I also had to take Thalidomide as part of the chemo.

Like you, living in hope that a breakthrough can be found in reversing the Amyloid from the heart muscle.

all the best