Stanford Appointment

Yesterday I had an appointment at Stanford with Dr. Schier, Amyloidosis specialist. He is not encouraged with the current results of Decadron and Velcade and wants to get more aggressive with my treatment. He said that in Italy they are treating this disease aggressively with 2 days of Velcade instead of one. So his future treatment plan ordered for me will be an increase of the dosage of Velcade from 2.0mg to 2.6mg once of week for the next two months. He will monitor my lambha light chain count during this period to see if there is any change in the count. If after two months the light chain count is still at around 200, he will increase the number of doses to two times a week for two months. After that, he will discuss the treatment of starting Revlind (another chemo drug) with my heart transplant doctors. Revilind has been suspected of causing rejection to the heart and he wants to discuss this with the heart transplant doctors before. There has been no evidence connecting heart rejection with Revlind but Dr. Kevin Anderson has been on the drug and has had two 2R rejections. So they are looking closely at this connection.

I realized yesterday this is going to be a lifetime of drugs managing the disease. We can only hope the new drugs being researched now will cure this disease. There is a new drug being tested in England that has blasted amyloid out of patients bodies. It will not be available in the United States for two years. I met Tony from my Amyloidosis support meeting at Stanford yesterday, and he said Stanford has also been researching a drug to do the same time. So I need to continue fighting with the drugs available to continue this fight until the drugs are available here in the United States. I pray to God it comes soon because there are so many people out there suffering and dying from this disease. A cure must be found!

I feel blessed to have the time given to me to continue this fight. Without the heart transplant last year, I wouldn't be here to write this post. I have been given a second chance at life and a chance to fight this disease and wait for a cure.

There are so many things in my life for the future that keep me going on. My new baby grand child, my sons and my daughter Erin, Mark, Mom and my friends and family. You all make life worth living.

REMEMBER YESTERDAY,

DREAM ABOUT TOMORROW,

BUT LIVE TODAY!