3/22/08 - Free From Steroids

It has been a while since I have updated my Blog, but that is because nothing much is going on. In my last report I told everyone that I was going to be completely coming off of the Prednisone, and then checking my blood work to see how I did with NO help. My blood test last week had my Hemoglobin at 13.9 (still very good) and my White Count at 40,000 (the lowest it has been in over 4 years). So with those tests, I was completely taken off of Prednisone as of last week. I feel fine, with no weakness or shortness of breath. Everyone tells me that I have a ‘rosy’ complexion and I am looking good. I have noticed that my lymph glands in my neck have gotten a little larger, but this is probably expected as the Prednisone was keeping them down. But for right now, it looks like we have the Autoimmune Hemolytic Anemia (AIHA) under control.

I go down to La Jolla next Friday for my IVIG treatment, and to get another blood test. All indications are that this test will come out fine, and I will not have to go back on Prednisone. I will then see Dr. Kipps at the end of April, at which time we will discuss what the treatment plan (if any) will be. If my red count stays up and my white count stays down, he may decide not to do anything until those things change.

Overall, I am doing pretty well. I am still playing golf on a regular basis, and we just got back from a week in Fresno (visiting my wonderful Aunts and my Dad and his wife) and Monterey for a Credit Union Conference. I felt fine even after all of that traveling. Donna has officially retired as of February 24th, so it has made traveling a little easier.

I know that several of you have recently given blood and the Red Cross and I thank you for the donation.

SIDE NOTE
Both Donna and I belong to a List Serv from the ACOR (American Cancer Online Resource) group specific to CLL. On this list, people with CLL or their caregivers post questions to members of the list. People on the list are in various stages of the disease, all the way from just being diagnosed, to having tried all the therapies and treatments that are out there. Since everyone responds differently to treatment, you can get a wide range of answers to your questions, so you have to sort out the responses and figure out how they pertain to your particular situation. However also on this list are several people with a research and/or medical background that will respond to questions. One of these people is Dr. Terry Hamblin from the UK. On any given day there might be 30% of the questions directed specifically at him, and on any given day, there may be 25% of the responses from him. It is unbelievable to me that in this day and age that someone would take the time to lend his expertise to total strangers that are only drawn together by this disease. It does help that he is an EXPERT in the field, has an active medical practice and has written many papers on the disease. To learn more about Dr. Hamblin, you can click on the link on the right hand side of the page.

This month he announced that he was retiring and was going to stop responding to questions that are put on the ACOR CLL Board. This was a very disappointing day for the Evans family and I will explain why. When I was the sickest and it seemed that we were not getting the correct information or the correct treatment, Donna went outside the box and emailed Dr. Hamblin directly and gave him my lab numbers and what treatments that I had been given. She asked him to confirm her suspicions about my Autoimmune Hemolytic Anemia, and what treatment he would recommend. He quickly responded to her email, confirmed her suspected diagnosis, told her what treatment he would recommend, and said that we should do it QUICKLY. Right after that email, I went to see Dr. Kipps for the first time. Not surprisingly his diagnosis and treatment were exactly the same as Dr. Hamblin's. As for the QUICKLY part, you may remember that Dr. Kipps would not let me leave his office without me agreeing to be admitted to the hospital for a transfusion of 4 units of packed red blood and high doses of steroids. In the past, I have not discussed the seriousness of my condition at that time, but I can tell you (and Donna will definitely concur) that I was very close to checking out. If left untreated, I would have probably gone into cardiac arrest in one or two days. If it weren't for the persistence of Donna, the agreement of the diagnosis by Dr. Hamblin and the action of Dr. Kipps, I am convinced I would not be here today. That is why Dr. Hamblin is so special to us.