June 27, 2006

Just a quick update message for ya’ll. On Monday I had a bone marrow biopsy. The preliminary report just came back and my marrow is totally clear of leukemia (blast cells). YAHOO. The preliminary report is from a FISH test. The final tests, PRC and BCR ABL tests, can detect much smaller levels of blast cells in the marrow. Their results will take about two weeks. I’ll keep you informed as I get more info.

Please keep those prayers coming.

June 24, 2007

Well, its day+147. That number will get confusing in 5-6 weeks. Right now it is the number of days after my stem cell transplant. In 5-6 weeks I’ll have another transplant so I don’t know if the “+” days follow the first or second transplant.

Here is a snapshot of me in my hospital bed. It isn’t flattering, but there isn’t much to work with.

The treatment plan is to get me home for a short while. Then I’ll come back in for conditional chemo. After the conditioning chemo I’ll get another transplant from the same donor. This transplant will contain fewer T cells and mostly leukocytes, the most aggressive white blood cells.

The leukocytes will add extra strength in the Donor verses Leukemia Effect (DvLE). They should eradicate any remaining leukemia cells in my marrow. The down side of added leukocytes is that they also intensify the Donor verses Host Disease (DvHD). However, I’ve had 147 days to change from my immune system to the donor’s system so GvHD is not as much of an issue. As you can imagine, this whole process is a delicate balancing act.

I’m still at a 40% chance of being cancer free in 3-5 years. After five years I would be considered to be in complete remission. Apparently getting two transplants is not that uncommon, so the odds come from actual cases, not best guess.

I’m finally feeling better after the chemo. God has spared me from mouth sores and many other side effects I could be experiencing. That is such a blessing. My white cell counts have not raised from the bottom (<100). The doctors assume that the white counts will be where I can go home at day 21-24 after chemo which is July 2-5. I’m hoping I get out early. I just love fireworks and seeing all of the stuff blowing up around our house.

I can’t tell you all how much I appreciate your prayers. Thank you from the depths of my being. Please continue to pray for God’s will. It will be interesting to see what His will is for me. So far, the journey has been hard and long. I look forward to relief from all of this medical stuff.

June 19, 2007

I checked into the hospital on Monday, June 11th. There has been a lot of stuff happening while I have been here. I have had so many bags of stuff pumped in me that I wonder how I made it.

First, of course, I underwent 5 days of chemotherapy. There were 3 different types of chemo. One type was for three days and the other two were for 5 days. Last Saturday night was my last dose. Each day of chemo added a little more nausea as a side effect. I’m feelings a little less nausea each day now. I hope that continues at a rapid pace.

The doctors are quite pleased with the effectiveness of the chemo on the leukemia. I am at the lowest point of my count and will need to wait for my white count to rise before getting to go home. I could be here another 2 weeks.

The second issue is a loss of ability to lift my right foot. That means I can’t bend my right foot up toward my right leg. When I walk, my right foot will drag unless I lift it really high. There has been some nerve damage to cause this. I won’t go into the medical explanation, but I have 100% chance of some good improvement in recovery with 50% chance of total recovery. I am being fitted for a brace to help in the therapy now.

As far as the next step(s) to address the leukemia, the doctors need to wait for more info to decide timing. I’ll let you know when I find out.

You guys are great prayer warriors for me. Please keep it up. I want to be in God’s will and to not miss His voice.

June 13, 2007

Starting about five labs ago blast cells started showing up in the peripheral blood. Over the course of four weeks it moved from 1% to 58%. This, of course, is considered a relapse. Because of this we have changed our course of action to the following steps.

This week I will be starting the first round of chemo which is specifically targeted to my situation. There is a 10-20% chance of morbidity going through this round of chemo. On the other hand the is a 40% chance this chemo will put the leukemia into remission temporarily. Within two weeks of the first round of chemo I will undergo a second round of chemo. This round is called a conditioning round and should eradicate any remaining leukemia cells.

As these two rounds of chemo are being administrated my donor is being contacted and hopefully being made ready for a second transplant. The second transplant will differ from the first one in that it will also include lymphocytes. Lymphocytes are the most aggressive white cells your immune system. This course of action is by far the most effective.

After the transplant the plan is to get started on a new study drug which targets the mutated cell 315 which is cause of all this relapse. The hope is that this drug from MERCK will hold down the proliferation of the leukemia while the graft becomes very strong in the marrow.

Please continue God’s will be done and that Barbara and I will be strengthened to endure it.

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.

June 4, 2007

Day+123. Well yesterday was another milestone in my life. On June 3, 2007, Barbara and I celebrated our 35th wedding anniversary. I am truly a blessed man. Barbara has been a great friend, wife and caregiver. We have had a great run overall. Of course there have been some big bumps in the road, but with God’s help they were overcome.

Thank you for all of the offers for treadmills. I got one yesterday from a friend and did my first attempt to walk on it today. I was only able to walk at a very slow pace for about 2-3 minutes. Then my legs burned and got really shaky.

I still don’t have much energy. A physical therapist came this morning and has started me on some rudimentary muscle stretches and exercises. They are designed to slow the muscle atrophy process. Apparently I can’t undo or rebuild muscle strength while on the steroids. I can only retard the muscle loss caused by the steroids. I am supposed to do exercises and walk every 2-3 hours. This will be all I can do physically each day. There is puzzlement because my right foot is being so much more affected than the left foot. Oh well, I seem to be the odd one through this process.

My stomach still objects to most foods and is punky feeling most of the time. My appetite has not been too good but I force myself to eat to keep up my weight and strength. I have reverted to chicken noodle soup, toast, scrambled eggs and applesauce. Occasionally I’ll venture out to French toast or pancakes, a Snapple or canned peaches.

I am really getting to understand how the Israelites started complaining about manna. Just as God was supplying all their needs, he is supplying all of mine. However, I seem to have a different perception of what I want. It’s hard to be thankful when I’ve experienced a different type of God’s blessing for so long. I am beginning to understand that I have been expecting certain treatment as my rights, instead of relying on God’s grace. I’m thickheaded, but I am learning slowly.

Again, I solicit your prayers. May God’s will be done.

June 1, 2007

Its day+120 today. I am still not feeling much energy. In fact, my energy level is pretty puny. I just returned from the doctor a couple of hours ago and my blood counts are very similar as before. I feel like I’m treading water at the deep end of the pool and it’s not time to get out yet. The frustrating part is that no one has, or is able to tell me how much longer I have to be there treading water. Of course, treading water is tiring on the old body. I’m just keeping my head above water and trying to smile.

Changing my injected medicine from Procrit to the new one has cured all of the bone pain I was experiencing. I was able to stop taking the Dilaudid for pain. When I stopped the Dilaudid (a man made derivative of morphine) I was pretty depressed for a couple of days. I think the depression was withdrawals from stopping the Dilaudid. I found out later that I should have tapered off slowly. Oh well, another of life’s lessons.

The Prednisone continues to take affect on my muscles. Even at my reduced dose it is affecting muscle strength. I am having a hard time raising my toes and foot on my right leg. It makes tapping my foot to music a left footed task. A physical therapist will be coming to our house on Monday to help me with a regime to retain as muscle as I can. Since my legs are weak, my balance isn’t very steady. That makes it harder to walk, especially on uneven surfaces.

I am wondering if one of you has a reliable treadmill collecting dust that I could borrow for a few weeks. We don’t have the room or desire to have one long term, but having one temporarily would help me exercise my muscles with the aid of having something to hold for balance. I would be less likely to fall.

I needed to get this out but must run because I am on my way back to OHSU for an MRI to assess any possible changes in my spine that could cause my right foot to not work properly. The doctor feels it is totally caused by the effects of Prednisone, but he always very thorough.

Thanks again for your prayers and kind thoughts. Please keep them up.