August 29th, 2006

Do you ever get tired of waiting around, especially when you are totally not in control and you aren’t sure of your future? That about sums up the way I’ve felt the past 2 weeks. Even though God has been very gracious to me by allowing me to get better and stronger each day, I want to take back control of my life. It has been difficult to release my will and let God continue to “drive” through this process.

At my doctor appointment today I found out that the bone marrow biopsy on August 16th showed my marrow has about 7% blast (leukemia) cells in it. That is down from 97% in May and 65% in July. When my marrow is below 5% leukemic cells, I will be classified as no longer in the blast phase of leukemia. I will be back in the chronic phase. 5% is the magic number where my transplant should be less troublesome and the likelihood of reoccurrence of CML is much less. 0% blasts in my marrow is, of course, better.

Now my doctor and I are trying to decide when the best time for the transplant will be. Waiting to get to 0% has real benefits. However, there is no guarantee that I will ever get to 0%. Waiting too long could allow me to back into blast crisis at a very fast rate. I feel like someone with the dice at a craps table who has won a great deal of money. How many more rolls should I take? I could win even more money, but I could lose it all in one bad roll. As Clint Eastwood says “Do I feel lucky?”

My blood counts are doing very, very well. My white cells, neutrophils, platelets and most other cells are in the normal range. My red cell count, including hemoglobin and hematocrit, is gaining every day and close to the normal range. My stamina is doing much better so that Barbara and I are playing some par 3 golf. After I hit an extra large bucket of balls at the driving range I’m a little pooped, but my energy comes back pretty fast.

I’m not sure where my treatment is going from here. From what my doctor and I discussed it sounds like the transplant will start in early October if everything continues as it has. There are a lot of things that have to fall in place by God’s grace before the transplant can happen. There is a great donor match for me. The match is not perfect, but it is as close as it can be without being perfect and is certainly good enough to proceed. Two more donor blood samples arrived last week and those samples are being processed. As long as I continue to get better and the decision to start the transplant hasn’t happened, OHSU will continue to search for donor matches. It is so reassuring to have a suitable match on hold.

Again, I’m just blown away that God has chosen to bless me with life when so many with my disease are dying. It is just another example of God’s grace, which means undeserved favor or blessing.

Thanks for all of your prayers. Keep them coming. They are working.

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.