Amyloidosis Support Group Meeting

Mark and I just got back from the Amyloidosis Support Group Meeting held at Stanford today. It was a great meeting and I enjoyed seeing and listening to everyone's stories.


There were 3 doctors present who specialize in Amyloidosis. Dr. Belinda Ng, cartologist who studied at Boston University Amyloidosis Center. She was very knowledgeable about the disease and of course the heart and how it pertains to Amyloidosis. I asked a lot of questions.


During the lunch break, Mark and I approached the Doctor from Stanford, Dr. Wittles. Dr. Wittles and his wife both work at Stanford and each are in the field of Amyloidosis and Multiple Myaloma. They had a lot to say. I asked many questions such as, will the amyloid attack my other organs. He said usually not. That there is a certain cell in my plasma that will go back to the original organ (heart) and the amyloid will attach again. So Stanford and Kaiser will not wait for the amyloid to attack my new shared heart. He felt my numbers were still too high but used caution. He is not a firm believer of stem cell transplant. He believes in the traditional chemo treatments first then consider stem cell transplant. He felt that if the numbers don't go down in a reasonable time to near normal (5-26) then a stem cell transplant would be the best option next. I'm hoping and praying that velcade and decadron will bring these numbers down to avoid a stem cell transplant. But as I have said before, if the numbers do not come down or if amyloid starts depositing in my new shared heart, I will proceed with a stem cell transplant. That is my only chance to put this disease into complete response.


I have mentioned in my past blog, Dr. Kevin Anderson. Dr. Kevin had a heart transplant 6 weeks before me and also has AL Primary Amyloidosis. He was the first heart transplant performed at Stanford with Amyloidosis Primary and I was the second. Stanford had not done a heart transplant on an amyloidosis patient in twenty years, I believe. I found out yesterday, that Dr. Kevin will be the first heart transplant patient to have a stem cell transplant and I will be the second. Dr. Kevin is my big brother. He goes first and whatever works on him, they will try on me. So I guess we are making history. Stanford wants to become the West Coast Treatment Center for Amyloidosis. As everyone knows, there are two East Coast Centers which are Mayo Clinic and Boston University. So anyone from the West Coast would have to travel and live on the East coast for treatment. That can be very costly and emotionally upsetting to a patient who has to be away from family for long periods of time. So we are very lucky to have such a prestigious hospital here in the Bay Area.


The doctors who attended yesterday cleared up alot of unanswered questions in my mind and I appreciated your support to our group. It was reassuring to see three doctors take time out of their busy weekend schedules to attend our support group meeting.


I made a big pot of spaghetti sauce today and look forward to having spaghetti and raviolis tonight for dinner. YUMMM!!! There I go again about food! Can't help it, it's just the drugs!!!


Hope everyone had a wonderful weekend. I'm looking forward to next weekend when Sonia, Jazmin's friend will come to meet me for the first time. Can you imagine what a moment in time that will be. Jazmin's Mom wants to come next month sometime and I can't wait to give her a big HUG and welcome her into our family. I know it will be very emotional for her and for me too, but Jazmin is here to help us through it. Making memories that take our breath away is what life is all about. I plan to make lots more!!!!

Love,
Debbie