May 15, 2007

Today is Day+103. It’s not been that long since my last update but several of you wanted to hear the results of the bone marrow biopsy when I got them. I saw Dr. Mauro today and the good news is that all but one of the test results were back.

We wanted to see at least 95% donor cells in the marrow and less than 5% of mine. There were 0 of my cells found in the marrow. My transplant is 100%, which is a great thing. I guess I’m no longer the old Art. However, I don’t know what the new Art is so we’ll have to discover me together.

My marrow is hypo cellular, which means the marrow has a lower than normal number of cells in it. That is normal for this time in the process. As the donor cells multiply they will fill it up. The marrow is hypo cellular because leukemia had occupied a lot of the marrow and the leukemia isn’t taking up that space anymore. There were NO signs of leukemia activity and my marrow is clear of it.

The one test that wasn’t back is called a PCR test. The PCR test is the most sensitive test to detect any residual leukemia markers in the blood. For some reason the PCR test was not done by the lab. They drew another blood sample today and Dr. Mauro has ordered the test again. It will be a couple of weeks before those results are back. Dr. Mauro is very sure that there will be no surprises with the PCR test because of the other results we did get. It appears I’ll be around for at least a while longer.

I got to lower my prednisone dose again today. YAHOO. The decrease is small, but I’ll take anything.

May 12, 2007

Well it’s officially Day+100 today. Although today is a milestone, it is not magical. It signifies my living through the acute phase of the stem cell transplant process and transitioning into the chronic phase. The probability of living long term without a relapse of leukemia (over 5 years) goes way up when a patient lives through the first 100 days. Many patients die early in the process by Graft verses Host Disease, a serious infection, relapse of leukemia, rejection of the new stem cells, or all the trauma to their bodies, heart or other organs.

I have been thoroughly blessed by God to have been spared. It has been such a blessing to have some great time with God, Barbara, the boys, family and friends. This process and my experiences have really changed who I am and what is important to me. I hope that as I heal I will continue down my path in the same direction. God has gotten much more significant and I much less.

Since about 2 weeks ago I have had a slight increase in stamina and physical well being. We went to church last weekend and that was really special for Barbara and me. I’ve also been getting out of the house occasionally to the store or on an errand. I’ve even been out working in the garage and the yard a little. I still tire easily but not as soon as before. I’m hoping that there will be another lasting positive step soon.

I’m going to stop my normal update and recap the first part of my journey for those of you who have started receiving these updates later and want to hear where I’ve been in this medical process.

I love you guys. Please keep praying.


WHERE I’VE BEEN SO FAR.

I was originally diagnosed with Chronic Myeloid Leukemia on October 23, 2004. I was placed on a new miracle, study drug called Gleevec 2 days later. The leukemia responded well and for the next 17 months and my life was pretty normal except for weekly labs to monitor my disease. The final process in my journey started back on May 22, 2006, when my chronic myeloid leukemia had stopped responding to the Gleevec.

In a matter of a very few weeks my disease had progressed into “blast crisis” where the leukemia was rapidly taking over. In fact my marrow was 95% affected by the leukemia, instead of the 10% of the last test. If the blast crisis had occurred even a couple of years prior, I would have quickly died because there was no therapy to overcome it.

However, through a succession of study drugs and therapies, the doctors were able to get the leukemia under control to the point that it was nearly undetectable when the transplant took place. Having such a low level of the disease present raised my chances of long term success from far less than 20% to somewhere over 50% with a transplant. There is no accurate data on success rates for me since people died when they went into blast crisis.

I’m the first generation of patient to go through the transplant process with this therapy. I was supposed to get a transplant in late December but a first donor became unavailable in the week prior to the scheduled transplant. Then a second donor was very quickly tested and I received my stem cells on February 1, 2007. I rebounded well from the transplant and was released from the hospital in 14 days, which is very early compared to the normal 5-8 weeks.

After being home for a few days, I developed Graft verses Host Disease and returned to the hospital for another 11 days. GvHD is a condition where the donor stem cells not only try to kill off any remaining leukemia cells but they try to kill my normal cells, especially digestive tract lining, skin, and liver. My particular GvHD has been hanging around my digestive tract and I still have to be careful with my diet.

It was 256 days of labs, biopsies, hospital visits, being very ill and many drugs between blast crisis and getting ready for transplant. Now it has been another 100 days since transplant. So I will be “celebrating” one year of going through the final portion of my process in another 9 days. On one hand it has been a long, long time. However, when I sit and meditate on where God has taken me, it seems much faster.

May 1, 2007

It is day+89 today. Twelve days until I can celebrate day+100. Yesterday I had my first bone marrow biopsy since the transplant. That wasn’t fun this time. The doctor had a problem with a blood clot forming at the first location so he had to bore a second hole after trying a few times unsuccessfully to aspirate a sample. OUCH!! Oh well, can’t win them all.

What we want to see from this biopsy is over 95% of the donor T cells and less than 5% of mine. These numbers mean that the transplant is progressing at the best possible rate. We also want to see no signs of leukemia in the marrow. Another test called a PCR test is being performed. The PCR test shows a cancer cell marker in the blood at levels far below any other test. We could see that there is still some of the marker of leukemia left. In fact, it could take up to a year to have the marker completely go away. All of the test results will hopefully be back in two weeks.

My strength is still an issue. The prednisone is keeping my muscles pretty weak. If I get up and do something requiring too much energy one day, I will have to just sit and/or lie around for the next couple of days to feel better. Its one step forward and two steps back as they say. But you know, I can’t complain. I am getting a little bit stronger than 3-4 weeks ago.

I just need to remember that it’s not about me. Everyone has issues. Mine aren’t worse, just different. I also need to remember who is in control anyway as it says in 1 Peter 2:21-25 To this you were called, because Christ suffered for you, leaving you an example that you should follow in his steps. "He committed no sin, and no deceit was found in his mouth." When they hurled their insults at him, he did not retaliate; when he suffered, he made no threats. Instead, he entrusted himself to him who judges justly. He himself bore our sins in his body on the tree, so that we might die to sins and live for righteousness; by his wounds you have been healed. For you were like sheep going astray, but now you have returned to the Shepherd and Overseer of your souls.

Thanks again for your prayers. I would appreciate prayers for good test results, if that’s God’s will.