October 27, 2006

Today has been just great. It has to be from all of our prayers lining up with God’s will. That is all I can figure.

I’ve been asked several times what the difference is between chemotherapy and the Gleevec and Dasatinib. There is a definite difference and I’ll try to explain it in a couple of ways, one way for the normal people and another way for those technical geeks.

Remember that I’m a newbie to the medical scene so this is all fabricated out of what I’ve picked up in conversations with medical personnel. It is frustrating because in one sentence they are all called chemotherapy and the next sentence they are definitely referred to as different and unique to each other. Don’t worry. There will be no tests and the explanations are not guaranteed to be accurate or complete and come with no warranties implied or expressed.


CHEMOTHERAPY VS GLEEVEC AND DASATINIB – FOR NORMAL PEOPLE

Let’s say you have a sick cow and you don’t want the sickness to kill the whole herd. Using chemotherapy is like rounding up the herd into the barn, tossing in a hand grenade, closing the barn door and sorting out what lived after the explosion. Gruesome but effective if the hand grenade is closest to the sick cow.

Using Gleevec or Dasatinib is more like rounding up only the sick cow and using a small bore handgun to dispatch the sick cow.


CHEMOTHERAPY VS GLEEVEC AND DASATINIB – FOR TECHNICAL GEEKS

Chemotherapy uses cytotoxicity to perform its therapy. Cytotoxicity simply means the drug(s) are toxic to cells. Chemotherapy uses a broad brush stroke to negatively affect all cells. Through experimentation doctors have found which drugs are most toxic to which type of cancer cells.

The reason that people lose their hair, get ugly mouth sores, have stomach lining problems and skin conditions due to chemotherapy is that chemotherapy tends to affect those faster growing and dividing cells, like in hair follicles and mucus membranes. Since cancer cells are very active they are affected by the drugs also. With chemotherapy you affect (kill off) a bunch of cells and hope the cancer cells all go away before the toxicity causes permanent and catastrophic damage in too many good cells.

Gleevec and Dasatinib are called Targeted Therapy (at least for now until a better term comes up). Instead of using cytotoxicity as the method for response, they use cytogenetics. Cytogenetics is where the drug is specifically targeted to interrupt the signaling process of the cancer cells within our bodies and not use toxicity as a means of effect.

In CML leukemia the cancerous cells put out a bad protein called BCR ABL. This protein causes some DNA in normal white blood cells to change position. Gleevec and Dasatinib target the CML affected cells and stop them from emitting the BCR ABL protein. Lowering that BCR ABL protein level in the bone marrow stops the swapping of DNA in more normal white blood cells.

The problem with narrowly focused targeted drugs is that cancer cells are pretty smart. In order to survive they mutate out past the effectiveness of the drug until they become resistant to the drug. That is why Dasatinib was produced to help those of us whose cancer cells have successfully mutated past the effectiveness of Gleevec’s range. Targeted therapies are definitely much safer and less damaging to our normal body cells.

October 26, 2006

Well it’s Thursday morning, October 26th and I’m still at Sunnyside hospital. My blood counts are very low now and I’m neutropenic again (very susceptible to catching viruses, germs and fungi). The staff has changed my anti-nausea medicine to a regularly administered dose in my PICC line and I am hoping that continues to work this well.

I don’t know if it is harder being really sick and in the hospital or if it is harder feeling good and being in the hospital. When I’m sick, the time has to pass somewhere and the hospital is as good as any place. When I’m feeling good and in the hospital, it has the feeling of being in prison or locked up somewhere. Oh well, I’ll just continue to rest in the Lord’s hands and see where He is taking me. I’m so thankful of His presence here.

I’m coming into the time of the chemotherapy process called the Nadir (pronounced ney-dur). This is where my blood counts are the lowest and there is the highest concern with infections and catching something. The Nadir can last 2 or more weeks and during that time I will have many red blood transfusions, platelet transfusions and watched closely for fevers. Each person is different in their response and the Nadir time could be much shorter too. It is again another door to go through in the maze of treatment.

Thanks again for all of your kind thoughts and prayers. They are continually felt and appreciated.

While you are praying, there is a little 4 month old boy with an extremely aggressive cancer attacking his little body. A large tumor on one of his ankles has necessitated the removal of his leg. Please pray for little Jay. He is such a sweet baby and in the midst of all of his pain and trauma, there is still a big, big smile on his little face.

October 21, 2006

Well the hard and heavy stuff has started. I was admitted into Sunnyside Hospital last night to begin chemotherapy today. I will be getting a total of 3 doses of Idarubicin which is infused into a new PICC line they inserted in my left arm yesterday. I will also be getting 7 doses of Cytarabine infused into the same PICC line over the next 7 days. The Idarubicin is infused over 20 minutes and the Cytarabine infuses in the same PICC line continuously over 24 hours for the next 7 days.

Of course I can’t do things normally. I will be continuing the Dasatinib during the chemo phase. No one has done this yet in the Kaiser or OHSU systems. The theory is that the Dasatinib will be helpful in getting a good remission from the chemo with little or no additional side effects. This is theoretical since there is no data to prove that. The only likely additive side effect is the buildup of liquid in the chest cavity, which can be threatening to heart function. Excess water is very easy to detect and they are watching that side effect closely.

Here’s a list of some milestones for the next few weeks according to the plan of the doctors.

1. Within 2-4 days I’ll be neutropenic (easily susceptible to viruses, bacteria and fungi infections). All chemo has a Nadir time which is where the blood counts are lowest. Since the Dasatinib has suppressed the counts already, My Nadir time is from day 2-4 until day 7-9, instead of from days 5-9.

2. My chemo regime will stop in 7 days.

3. A bone marrow biopsy will be done on the 14th day to see the effectiveness of reducing the leukemia in the marrow. Normally there is a 50% chance of good, controlled remission. Since I’m also continuing the Dasatinib during the chemo phase, the 50% should be higher but there is no data to support that.

4. My hair will probably fall out between days 17-20. Apparently it comes out all at once on this stuff.

5. My marrow will be rebuilding during weeks 2-3. Hopefully my strength will improve somewhat during that time. The additional strength will be helpful during the stem cell transplant.

6. I will start the chemo that prepares me for the transplant in 3 ½ weeks. From what I understand there will be 2 days of chemo then that will totally clear (kill off) my marrow and any remaining leukemia.

7. The stem cell transplant is tentatively scheduled for 4 weeks from today. The donor has been contacted to see if that time is OK for him. By the way, the donor is a male in his 40s, I think from Great Brittan. That’s all I know about him other than by his weight he is probably in good shape (or he has to be really short to be overweight.)

The schedule can change for a lot of reasons. The donor may be on holiday (vacation), side effects may cause the chemo to be temporarily stopped, or many other reasons.

If anyone wants to visit they should do so very soon or wait for a while. Please call me on my cell to see what’s going on before you come. No sick people please.

I sure would appreciate any prayers to get through this process. As I’ve said before, my first and highest desire is to be in God’s will. I don’t have a lot of clarity about what that exactly is right now, but I’m sure He has. I do know that I’ve been able to share my faith in and knowledge about Jesus Christ to a number of people in the medical community. That has been very rewarding.

I’ll let you all know if there are any changes. I’ll also try to continue the updates regularly as my strength (or lack thereof) permits.

I love you guys.

October 16, 2006

Well, we left off in my last update where I was placed on a drug called Dasatinib because the study drug, AMN 107, quit working. I’ve been on 70mg of the Dasatinib twice a day since September 22st. People who have become resistant to the study drug (like me) have had a good response to the use of Dasatinib.

I had another bone marrow biopsy on October 11th. The preliminary results indicate that, although my blood is clearing of the leukemia, there is not much improvement in my marrow. I will be increasing my daily dose of Dasatinib from 70mg twice daily to 90mg twice daily. I’m not looking forward to this because I’ve had some pretty nasty side effects at the 70mg level.

Where do we go from here? If the higher Dasatinib dose affects an improvement in my marrow, then I’ll keep going with the Dasatinib until the leukemia is down to a level low enough to start the stem cell transplant. If not, then the only option left is chemotherapy. We should know in 2 weeks which option is next. The doctors are not going to waste much time on the Dasatinib unless there is a substantial change very soon.

Thanks for your prayers. This has been a long road and your prayers have really been instrumental in sustaining me. I can tell you from my experience that God works through the prayers of His people.

October 7, 2006

Well it’s been 2 weeks since I switched from the AMN 107 drug and started on Dasatinib (Sprycel) by Bristol-Meyer Squibb. This drug started out with some pretty harsh side effects and those side effects have not let up. It seems that each successive drug I’ve taken is worse on me than the one before.

The hardest times for me now are nights. My temperature rises to 101+, there are a lot aches and pains and my blood pressure and pulse rates get quite high. By morning most of the effects have subsided, but I feel pretty beat up. Its like I remember hangovers in my non-Christian, younger years. My best time is late afternoon and early evening. We have had friends over for dinner and it has been great to be able to just “hang out”. I love you guys and it is fun to hang out with you when that works out.

Some of my blood counts have been dropping with the Dasatinib because as it suppresses the leukemia, it also suppresses the output of the marrow. None of the blood counts are dangerously low but they are at the point where I feel pretty fatigued. I started administering Procrit shots on myself once a week and hopefully they will increase the red cells, hematocrit, hemoglobin and platelet levels quickly.

The jury is still out on whether Dasatinib is making any changes in the leukemia level in my marrow. I will have a bone marrow biopsy this Wednesday. We should have preliminary results back in 5 days from the biopsy. Those results will be important to help determine whether I stay on Dasatinib as it lowers the leukemia or whether I go straight to chemotherapy and stop Dasatinib.

Even with the side effects of Dasatinib it would better to stay on it than to have to get chemotherapy before the transplant. If I have to do a regime of chemotherapy to lower the leukemia in my marrow, then there will be a short waiting period of 2-4 weeks before getting another regime of a different chemotherapy that is necessary to prepare for the transplant. A double dose of chemotherapy heightens the probability of serious complications during the transplant process.

Oh well, God knows what is best for me and I am trying to rest in His plan. I do have to admit that I would really prefer to know what He has in mind, instead of just relying on the fact that He is in control by faith. If He can create everything we see and can’t see, then I’m confident He can handle my situation. ONLY GOD.