August 10th, 2006

God has been gracious to Barbara and me. I am blessed to be alive, let alone to be feeling as well as I am. Last Friday I met with a different oncologist at Kaiser since my normal oncologist is on vacation. During our discussion the new doctor said to Barbara and me, “Mr. Young as short as a year ago we would have been speaking about you in the past tense in the same situation”. That was a sobering thought. I recently found that the study drug I’ve been taking has been on study trial for a short while, but I am only the second person who has entered the study at OHSU. The previous studies have been in other parts of the world. I’m pretty much following right after the monkeys.

The past 2 weeks have been great for me with a lot of energy and little side effects. As I mentioned in my 7/23 update, I started giving myself Neupogen shots. Neupogen is a protein that signals bone marrow to produce white blood cells. It took about 8 daily shots before my white count quickly rose to a level that finally stopped at twice the normal level. Now I am only taking a shot if my ANC (actual neutrophil count) goes below 500. That number of 500 is where I have to start wearing a mask and avoid people.

My last shot was on Saturday, July 29th and my ANC count is holding at about 1100-1200. I feel so much better with the more normal count. I also started giving myself Procrit shots once a week and last Monday gave to myself the second shot. Procrit is the protein that signals bone marrow to produce red cells. My Hemoglobin and Hematocrit counts are now holding pretty well too. Finally, my platelets are doing well at 185 today. All of these numbers are very low for normal people, but they are great compared to where mine have been.

I am still on the study drug AMN 107. There was a lot of discussion of changing to another therapy but my counts are improving and the percentage of blast cells (leukemic cells) in my blood has gone from 97% to about 15%. It has been a slow process to have my bone marrow clear itself of the leukemia. On August 16th I will have another bone marrow biopsy that will give a good indication of how well my marrow is clearing. It is important for my marrow to clear so the donor stem cells will have a good place to engraft when the transplant happens.

As far as finding a suitable stem cell donor goes, the first round of 6 potential donors was tested and most were not acceptable, either by not being available at this time or by not being a great match for me. There was an option where 11 out of the 12 proteins were an exact match in a donor. I have a very common HLA blood type with the exception that most people who have my type have an 03 protein in position “C”. I have an 04 protein in my position “C”. If conditions were that I needed to proceed quickly with a transplant, they could use the person with a mismatch at position “C” because the “C” position is not as critical as some of the others.

Since I have time to research more potential donors for an exact match, OHSU has asked for samples from the next round of potential donors. OHSU has determined from their experience that people with my HLS blood type who have an 04 protein in the “C” position tend to come from Great Brittan. OHSU has contacted the British Bone Marrow Registry (BBMR) and have asked for blood samples from 3 people. The BBMR is a private registry and donors did not show up with the previous search of the National Marrow Donor Registry.

When I was growing up I didn’t go to church very much. However, I did go enough to memorize the 23rd Psalm. My experience with leukemia has challenged my awareness of that Psalm and has given me a much more real and accurate idea of what it means to have the Lord make me lie down beside still waters and when I walk through the valley of the shadow of death I do not feel evil for God is with me. What a blessing.