June 7, 2007

Its day+125. I know this update is coming out very soon after the last update. However, many details have been developing quickly and I’m trying to keep you all current.

Over the past two blood draws there have been some “atypical” cells showing up in the peripheral blood. This is not abnormal. However, the counts are going up slightly and not down. Because of this, another BCR-ABL test was done yesterday to determine exactly what the cells are. I had another bone marrow biopsy done also. Preliminary indications are that there are some leukemia cells active in the marrow.

What does this all mean? Two things are obvious. My treatment is going to be ramping up quickly and my prognosis for long term survival is less favorable than before. The doctors are still quite optimistic that a cure is possible. There are a number of therapy options left and we will have to decide which one or ones are worth pursuing. The following are a few of the most probable ones.

Part of the transplant process requires using steroids to suppress immune system of the donor from attacking my good cells. Without steroids, a severe case of GvHD could easily be fatal. Over time my old immune system will be totally gone and the donor immune system will completely take over. As the transition to the complete donor immune system occurs, steroid dosage is slowly reduced and eliminated.

On the other hand, the immune system is the mechanism that targets and destroys any residual leukemia cells. Because the steroids are suppressing the immune system, the immune system isn’t as able to destroy the leukemia cells. To improve the graft verses leukemia effect the doctor is rapidly lowering my Prednisone dosage. The doctor has cut my steroid dosage from 35mg to 15mg. Prior to this the dosage has been reduced by 5mg every three weeks.

There is a new aural steroid called Beclomethasone, which is not systemic like Prednisone. Systemic means it builds up in all parts of the body. Beclomethasone is not systemic. It is an aural, time released, steroid that will stay in the digestive tract to help any remaining GvHD to heal. But it does not have the same effects on muscles, immune system, and other organs like the Prednisone. We have been working on getting it for several weeks now because Kaiser does not compound it and it is so new that it hasn’t been recognized for use with CML. Only a few specialized pharmacies can compound it. It appears that I will have it on Monday. When I receive it the Prednisone can be reduced rapidly without the same exposure to GvHD relapsing.

Another area that the doctors want to pursue is to check my spinal column for any leukemia cells with a simple spinal tap. Apparently, the brain and spinal cord have a heightened immune system and protection that is somewhat separate to the rest of the body. When a person receives normal chemotherapy, it does not penetrate the protective barrier around the spinal cord well. This means leukemia can hang around the spine (like a storage facility) and not be eradicated by the chemo. If there are leukemia cells in my spine, there is a specialized chemo that has very few side effects that should remove all of the cells.

There are many different mutations of white blood cells that are classified as leukemia. When I was first diagnosed, I had a #148 mutation. Now the cells in my peripheral blood have been identified as #315. A new drug has been developed by Merck Pharmaceuticals that is highly effective against the #315 mutation. It is currently on trial at Stanford University so I would have to go there to take part in the study, should I choose to go that route.

I am so thankful that I can trust the Holy Spirit to be my comfort and my guide. This would be a long, scary journey without Him. Since I know where I’m going after this life, I am not interested in trying to hang on to this temporary life, especially if that means my remaining quality of life will suffer. Please pray for clarity for Barbara and me and for God’s will to be done.