September 27, 2007

Well it’s been 4 ½ days on the new drug, Dasatinib. There are still pretty fierce side effects so far. Since it takes a week for the study drug to reduce to 50% in my body, generally people will wait 1 ½ to 2 weeks between taking one drug and starting the other. Since I didn’t have the luxury of time, it is like I’m taking both drugs for a week. That produces more toxicity, which produces more side effects. The side effects that are hanging on are severe head ache, bone pain, muscle cramps and fatigue. Hopefully the side effects will resolve themselves as I get used to the Dasatinib and as the study drug level in my body goes down.

Just before the study drug quit working last week, the blast count in my blood was bouncing between 0% and 4%. Five days later, this Monday, the blast count was 24%. Today (just two days later and 4 days after starting Dasatinib) the blast count went back down to 4%. That is great news. The rest of my counts are also getting close to the same numbers as when the leukemia was in control for the past couple of weeks. The bone pain and resolving blood counts are probably indications that the Dasatinib is rapidly kicking the leukemia out of the marrow.

Thanks for your prayers. Many of you have expressed your concern about the facts in my last update. This update is to help you sense the positive turn of events in a very short time frame.

Thanks again for your prayers, thoughts and support.

September 24, 2006

We have been so supported and blessed by you all in this trial. Thanks to each of you. Your support and prayers are very much appreciated.

In my last update my blood showed no blast (leukemia) cells and I was waiting for another bone marrow biopsy to determine the health of my marrow. On Friday, September 22nd, I received a call from my oncologist about the biopsy. Apparently the study drug has made tremendous reduction in the leukemia. However, the effectiveness of the drug has apparently ended. The marrow was hyper-cellular (packed with an overabundance of cells) for the first few biopsies. The last couple biopsies reveal a hypo-cellular (cleared out and ready to produce normal cells). The concern is that there are still leukemia cells in the marrow. Now that the marrow is cleared, there could easily be an advance of the leukemia again into the open marrow since the study drug has not removed all of the leukemia cells.

If you remember, I was nearly taken off the study drug a couple months ago because its effect on the leukemia was so slow. I was going to be placed on a newly FDA approved, competitive drug, called Dasatinib. Well I was taken off my study drug and took my first dose of that new Dasatinib drug last Friday night. This new drug is very similar to the study drug, but is different enough that there is a good possibility of success in removing the blast cells from my marrow. The doctors are not waiting a long time to see a reversal with this drug. I will be having another biopsy in a couple of weeks to determine my response to the drug.

I’ve taken 4 doses so far of the new drug and I have been experiencing some strong side effects. Normally I should have been taken off the study drug for 1-2 weeks and let it get out of my system before introducing the new drug. However, I don’t have the luxury of that time. Therefore, there is more toxicity when mixing drugs (remember the 60’s). I’m hoping my side effects will reduce as the study drug level goes down in a couple of days. I’m feeling pretty puny, like I did a couple of months ago.

There are two possible paths for my future treatment. If I have a response to the Dasatinib, then I will go directly into a stem cell transplant after waiting to see a sustained remission for a couple of weeks. If there is an insufficient response, then I will have chemotherapy to kill the leukemia and then go into the transplant process. Having chemotherapy and then getting another dose of the transplant chemotherapy has a much lower chance of success because of the added toxicity of two chemo regimes. As you can imagine, we’re praying for a good response to the Dasatinib.

I sure would appreciate your prayers. In my selfishness, I want many more healthy years with Barbara, my boys, my family and my friends. However, I am committed to be content with God’s will. If His will is for my healing, then I am happy for that. If His will is that I will not be healed and I will soon be taken from my life on this earth, then I am committed to that also. May God’s will be done.

I love you all and am so thankful for your support and prayers.

September 10, 2006

Last Wednesday was a huge milestone for me. I had a CBC blood draw then and the results indicated there were NO blast (leukemia) cells in my blood. Friday’s CBC also indicated my blood was blast free. This is so incredible since my white blood cells were about 97% blast in mid May 2006. Your prayers coupled with the study drug I’m on have really done the trick. This week on Wednesday I’ll go in for another bone marrow biopsy and it is probable that my marrow will have between 0 and 1% blast cells in it. My strength is returning and I feel great. There are some side effects to the study drug, but they are easily lived with.

My Oncologist will probably talk a lot about the timing for my stem cell transplant on Wednesday. There are blood samples from two additional, potential donors that should have been processed and available to see this Wednesday. I am assuming that the actual donor will be picked this week from the two matches and the two additional donors. The actual donor will be contacted immediately to determine when he (or she) will be available.

I’m not exactly sure how long the process to get the donor and me ready for transplant will take. If circumstances take normal times I understand that the transplant will be sometime in October or early November. The doctors still are unsure how much chemo I will need to give me the best balance between minimal, long term side effects and lowest chance for future relapse of the leukemia. I’m glad they are making that decision because I don’t have a clue.

I have been telling everyone for quite some time that the plan was to find a donor and get myself down to no leukemia cells. Now that the plan is going as well as could ever be expected, I am sitting here amazed that God has been so gracious to me. It is one thing to have a perfect plan, but it is another to experience that plan working so beautifully. I, of course, am thanking God that I can have some more time with you, my family and friends. But I am also thankful for each of you who have used some your precious time to pray for and support us. God has truly blessed us with many great people in our lives.

Barbara and I have known for a while that a stem cell transplant is essential for the long term treatment of my CML. However, we have been putting off thinking about the ramifications of that process. There were so many large hurdles to overcome and we needed to focus on those first. We solicit your prayers. This transplant process is going to be difficult without a special measure of God’s peace and grace.

Many thanks for your willingness to rally round us and be our support in prayer.