We are scheduled to see Dr. Benson in Indianapolis, IN next Friday - so we don't know what kind he has. I was glad to find this group - I'm sure I'll have a lot of questions as this goes on. Thanks for all the kind comments and info when I joined - its nice to be able to talk to people who are going through this.
Hi i am 56 too and will find out next tuesday what kind i have too then let treatment comemce as i am so tired now i am going to the royal free london hospital i wish you all the best for the future i am lost just now like yous not knowing xxx
I was 54 when I was diagnosed--am 56 now and it has been an interesting couple of years--I learn more all of the time. Please share any information you are comfortable sharing once your husband has his visit--we can all learn so much from each other! Good luck!
I was 53 at diagnosis in 2005. At that time the info I read about amyloidosis said that it was most often diagnosed in men in their 70's! So it is a sign of progress that the diagnosis is being made in more and more "younger" people, as all of us in this discussion were in our 50's at diagnosis. I am thinking that with earlier diagnosis more of us will live much longer lives. I think the amyloidosis community must have been doing a good job in educating physicians about this disease. Getting a physician who knows all about this disease is critical.
Hi I was 57 and diagnosed last year. Had 4 months of chemo and a stem cell transplant. It's been 4 months since the transplant and am doing well. Still tired and still have the brusing of my eyes but thankful no organ damage. Just take one day at a time! Take care.
His diagnosis is cardiac amyloidysis - primary. They did a bone marrow biopsy and will do an echocardiagram on Monday. Dr. Benson was very helpful but didn’t provide a lot of information regarding prognosis. Probably because the disease is so different with each individual and so much depends on how far the disease has progressed when first diagnosed. If he isn’t a candidate for the stem cell treatment, they will just do chemo and try to force a remission. We are trying to get our heads around this and figure out what this means in the long run. He had a bout of congestive heart failure December 2013 which Dr. Benson thinks was amyloidosis related but was not diagnosed as such. I am angry at the cardiologists who took the easy diagnosis.
When my cardiologist saw that I had restrictive cardiomyopathy, in 2003, he didn't link it to amyloidosis either. I was not diagnosed until 2005 (both cardiac & kidney). By that time I was very easily getting short of breath, and severely dizzy if I walked too fast or up a long hill. So the restrictive cardiomyopathy, or in slang - stiff heart, remains and I have been able to be off the chemo drugs for 3 years now. I took the oral chemo drugs Thalidomide and Decadron for 6 years. No stem cell procedure. I can now take 2-3 mile walks as long as it is on relatively flat terrain and I don't try to power walk. I see my cardiologist every 6 months, with EKG and echocardiogram every year. As you stated, every case is different, but I want you to see that your husband can get through this.
I’ve been in remission for two years. My A1 was in my heart ,kidneys & skin. I did velcade ,cytoxin, & dexamthezone for a year and half, every week. I had a fantastic team. I traveled to the mayo clinic, & Stanford . They all participated in saving my life. I was on oxygen for 9 months. I found it takes a village. My advice go where ever you need to get help. I now deal with anxiety & high Bp. Good luck everyone