Visitors to this Blog

If you are a regular visitor to this Blog, I appreciate your interest and support as I get the upper hand on this rare disease, AL Amyloidosis. At the bottom of the page of this Blog is a counter that registers every unique visitor here. You will see that I have registers over 5,000 unique hits from all over the world the past year. There must be an interest in either the heart transplant (done in September 2009 and very successful) the stem cell transplant (done in February 2010 that will need to be done again) or in the amyloidosis. Also you will see a “ClustrMap that shows the general locations of those visiting this Blog. Most hits are from people that know me personally, around Wenatchee and Seattle areas. The rest of the hits are scattered all over the world. I am registered on the “Transplant Café” , a support group for transplant patients and have a link back to the Tin Man blog that other heart or stem cell transplant patients log on to. I also get traffic from friends at work and from my high school class mates. Both groups have been a big source of support to me and my wife Rose. As far as where most visits come from by country, the ranking is first the United States, then Canada, the United Kingdom, the Netherlands and Russia. Thanks for the visit. Many of those who stop in are praying that I recover soon. Thanks for those prayers and your interests.

You may remember that I have encountering some obstacles with the insurance company going into a second stem cell transplant. The second transplant is needed because the first effort was not as aggressive as typically done because at the time I was recovering from my transplanted heart. While the cells in my bone marrow that create the amyloid protein were knocked back, they remain persistent enough that more work is needed. I have been on Revlimid and Velcade to control the amyloid. These drugs have slowed down the growth but have not been able to eradicate the problem. These drugs also are lowering my red blood cell count and my immune system. Because of the long time I have been on these drugs, my oncologist is giving me a “chemotherapy holiday” for a few months. My health care insurance is recommending that I look into a “clinical trial” for a more permanent treatment of the disease. A clinical trial allows for the exploration of new drugs or procedures for clearing a new drug to market. The patient benefits from the new medications. One facility that performs a lot of clinical trials for amyloid patients is the Amyloid Treatment and Research Program at Boston University School of Medicine. They currently are recruiting patients for nine clinical trials for Amyloid. We anticipate that sometime in August we can start with this. Otherwise the Mayo Clinic in Arizona is recruiting patients for five trials right now. It would be nice to have the work done at the Seattle Cancer Care Alliance but they have no trials for Amyloid; only for the cancer disease that is similar to my disease. Traveling across the country and temporarily setting up “home” will be a hardship. We are hoping the process will not be longer than two or three months with the follow up appointments to be done locally. As we find out more we will post it here.

I close this blog wishing my close friends in British Columbia best of luck to the Vancouver Canucks who are ready to take on the Boston Bruins in the Stanley Cup Finals, starting this week eh.