Don't know where this doctor gets her prognosis information. But her time-frames are a load of crap. Lot's of doctors know what it IS but very few understand it and know how to treat it. She is obviously one of the ones who don't. My father has had it for 2 years and is doing well post-chemo and a friend has had it for 10 years. He had chemo 6 years ago and is working full doing and doing great.
Hi, I have Primary Amyloidoisis and have had it since 9/08. Mine is mostly controlled.
It is good to see a Doc that knows something about it-since most don't. It would be best if you could get to Mayo, Minn. or Boston Un. Med. Center-they have docs. there who treat nothing but AMY as we call it. Also web search Amyloidois Support Groups
and join the group-there are over 700 people there who will help and support you.
I should add that the amyloid was also in his spleen, liver, kidneys, and GI tract, with mild heart involvement. It sounds horrible, extensive, but he has done so well since the transplant and on the Revlimid.
Thank you for responding. It has been 18 months since my husband was diagnosed with
PSA type amyloidosis. He had the stem cell transplant and is on Revlimid. His cardiac involvement is mild , and he has done well so far, much better than expected. His last urine test showed his kidney proteins are going back up, around 5,000. Our Dr. stated his blood work continues to look good though. I was wondering if we had been overly optimistic and is the increasing protein a sign of the start of more unfavorable things to come???
Systemic amyloidosis can be classified as follows: (1) primary systemic amyloidosis (PSA), usually with no evidence of preceding or coexisting disease, paraproteinemia, or plasma-cell dyscrasia; (2) amyloidosis associated with multiple myeloma; or (3) secondary systemic amyloidosis with evidence of coexisting previous chronic inflammatory or infectious conditions.
PSA involves mainly mesenchymal elements, and cutaneous findings are observed in 30-40% of patients. Secondary systemic amyloidosis does not involve the skin, whereas localized amyloidosis does.
The prognosis of PSA is generally poor. Cardiac failure and renal failure are the major causes of death. The median survival in most reported cases is as long as 14.7 months. The prognosis depends on the response to therapy and the extent of disease. The presence of congestive heart failure is associated with a median survival of 7.7 months.