Well, I said I would let you all know about today.We went to see Dr. Page and I am not a candidate for any trials because of the renal failure. I would be dismissed from any trial. If the Velcade trials are a success and Dr. Page feels they will be for WM, then I might be a candidate to take it under very controlled conditions. I remembered the Velcade exacerbates Peripheral Neuropathy and he said that it does. Of course I have PN and that is another reason to be careful. He said I am very stable at the time and as long as we can keep it that way, I can lead a fairly normal life. He said I have too many problems to think about being in a trial and I also asked him about a kidney transplant. I did not think I could ever be a candidate for one and he said that I am not. Here again because of too many problems. My blood counts are all too low to ever undergo surgery. My Hgb, white cell count and platelets are off the low end of the scale and any surgery would put too much pressure on my system and complications and infections would be a huge factor. He did not feel I would survive the surgery and if I did, the aftermath would be worse than dealing with what I have now. I respect Dr. Page and have always ask him for the truth and not to sugarcoat anything. He is a class guy and I will always do what he suggests. He feels we are on a good path at the time and we need to stay with what we are doing now. That is fine with me and I enjoy the good days and there are many more good days than bad.

I had to go to the hospital today for two units of blood, it has been two months since I have needed blood and that is certainly better than weekly like I had to for over three years after my stem cell transplant. I have not required platelets for over a year. They are remaining low (about 25,00) but they are remaining stable.

I was unable to see Dr. Page today but have an appointment Thursday morning. Another bit of information: Dr. Kumar said there has been moderate success with some treatments to rid the organs of some amyloid deposits. He said not all but some and not all types or Amyloidosis or in all organs. This is advancement because at first I was told once the deposits were there, they stayed. It is encouraging to hear of progress being made from the research being done on Amyloidosis.

I realize I have not written in my blog for a year and will try to do better. We went to a meeting of the Amyloidosis Support Group in Dallas and I got some interesting news. The doctor from Mayo/Rochester, Dr. Shaji Kumar, was talking about the progress made lately in Amyloidosis research. He also works with Waldenstrom patients...go figure. He was talking about a treatment that is not for everyone with Amyloidosis but it is helping slow down the progress of the diseases of the combination of WM and Amy. It is more against the Waldenstrom’s. I asked him since I have both am I a candidate for Velcade treatment and his reply was, "yes" so I am contacting my oncologist tomorrow for an appointment. I was to see him next Monday but if I can get in tomorrow, I want to see about this. This is the first hopeful sign I have had since the stem cell transplant and we all know that went less that perfect. It did bring my WM protein numbers down and that was a good thing but that was all it did and not what the doctors had hoped it would do. We will see, I am anxious to talk to Dr. Page. I may not have quoted Dr. Kumar word for word but he gave me hope that someday there will be a cure for Amyloidosis and that they are doing their best to keep patients alive and active until that day comes.

Not much is different and I am continuing to function daily and enjoy much of my time. Arthur and I went to the Amyloidosis Support/Texas Area meeting last Saturday. Dr. Francis Buadi from Mayo/Rochester, Minnesota was the guest speaker. He is a specialist working with amyloidosis and was very interesting and informative. He gave us information about the research and testing taking place at Mayo and other institutions for amyloidosis. When I asked about my situation, he said none of the medications would be given to me because of my low blood/platelet numbers. I really knew that was probably the answer but thought I would ask anyway. I have so many problems that no one will chance testing on me. Some testing might be effective on me but it could make some of my other problems worse. So it is just stay the course.

I cannot believe it has been so very long since I have written in my blog. Things went ok with the new catheter. It left me very bruised and sore but that has gone away and it is working quite well. I only have to get blood about every four or five weeks and that is not so bad. The Exjade (iron binder) is doing a good job of bringing my iron and ferritin numbers down and I am not even taking it at this time. I will start again if my numbers start to go back up.

I had to have a cyst taken off my right hand today so it is very sore. Thank goodness I am left-handed so I can do most things. They will send it off but it looked like it will be fine. The pain has returned so I am unable to stay in bed so thought I would get up and do a few things and hope I can rest later tonight. All-in-all things are going pretty well. Spring is here and our yards look wonderful and the weather is cool and beautiful. That will all change in a few weeks and summer will come to town.

– My catheter will be replaced next Tuesday morning, the 26th. This will be my tenth catheter since 2000 so I should have the drill down. It does need to be replaced because it is showing signs of problems with protruding more and more.