I am a therapist and all my life very active, swimmer, runner and teacher for thirty years, saying that when I was hiking and was struggling breathing ,swollen legs and fatigue I saw my doctor as I. Had planned a three week trip to Bali. I was checked and told to come back as soon as I returned. I did and started the long tests at first it was determined I had chronic kidney disease. My Doctor was not satisfied and said their must be a reason. We did a kidney biopsy and AI amyloid. I had NO idea what it was so got on the computer and was to say the least shocked.
Since feb first I have been to mayo clinic and Stanford. Since I live on the central coast of Ca. And I love the team at Stanford I have chosen Togo their. I have a great team in San Luis Obispo. I get my chemo here. For seven months I was very, very,sick. I was on cytoxin, velcade, dexamethasone heavy doses. A friend and nurse said I was “circling the drain” many times in those months. In July Stanford team said I was not making any new Amyloids and can be on remission. So treatment is Velcade. Everyother week. I’m still working as an Aquatic therapist and getting a bit stronger. My life has really changed, I have had to reach out to family and friends for help, that’s had for an independent 76 year old “healthy” women.
Please keep me informed of your progress,by the way Amy is In My kidneys, heart, gut, tongue and worst of all my skin(I itch) all the time!.
I know how you feel. I was an active 50-year-old--100 mile bike rides, workout classes where I kept up with the 30-year-olds, active vacations of hiking, white water rafting, skiing and surfing. I was diagnosed in February after noticing an enlarged liver, edema in my legs and ankles, and abdominal bloating that started in October of last year. Like you, I was shocked at what I read on the internet (not hack sites but the peer reviewed medical journals) about prognosis.
I have AL in my liver, kidneys and gut. I underwent a stem cell transplant in April and I'm now in remission. I was starting to get really sick and incapacitated before the transplant. I'm fortunate that they found mine relatively quickly but it still caused a lot of damage to my liver (its about twice the size of a normal liver) and gut.
I'm also an independent, healthy woman and it was hard for me to reach out for help. But I looked at it as a way to speed my recovery. When others were helping with the more mundane things, it gave my mind and body more energy to devote to healing. I learned that people who care about me want to help and by letting them, I allow them to contribute to my recovery.
I will keep you in my prayers. Glad that you're in remission and on the road to recovery. I did a lot of physical therapy (outpatient and on my own) after I got out of the hospital in May and I'm pretty much back to a normal, functional energy level. I'm just starting to work out again. I want to become the active fitness person I was before I got sick. One day, I was frustrated with my energy level and my inability to do what I considered a normal level of activity. A friend who had gone through an aggressive cancer treatment told me to go into each day without any expectations and accept what each day brings. That attitude kept me from getting as frustrated as I had been.
You all are in my thoughts and prayers
I just returned from Stanford. I'm still in maintance. I asked if I could been selected for a trail so my name has been added. This one is an anti-body that is suppose to eat the amyloid on the major organs. Wouldn't that be nice. I have good days and so not so good. When I have my Velcade (every other week) I feel pretty bad for a couple days. Have a lovely week hope your doing well. Kay
Boston University is enrolling patients into the study for the NEOD001 clinical trial. If you're accepted into the program, they will reimburse your travel expenses. Here's the person to contact--
Anthony Shelton, RN
617 638 5612
And here's a link to the fact sheet on the study http://www.amyloidosissupport.com/NEOD001_factsheet_122112.pdf
Couldn't hurt to see if you could enroll into the Boston study.
I have attached a copy of the actual informed consent form for the NEOD001 trial. It gives a lot more information on the trial which IS currently recruiting patients at Stanford. No need for her to leave California! :-)