Thursday, August

I got out of the hospital Saturday evening. Yippee! Hospitals are just not that much fun. And I always come away wondering about the quality of our medical care. It just seems sort of primitive to me. It reminds me of the doc on Star Trek who marveled at how primitive we 20th century (I know we are in the 21st now) creatures were.

The infection is under control and the preliminary results of the blood cultures were negative for the blood stream, which is good news. So the infection was localized at the point where the central line entered my chest. I never did run a fever, so this makes sense.

I go back to the infectious disease doctor, Dr. Marlowe, today to go over the final results of all the blood cultures that they ran. If that's clear, which it should be, then I get to come off the IV antibiotic (Vancamycin) and go on an oral medication. I could also get this PICC line removed. I am debating where or not to remove the PICC line right now, though, since I'll need something like that to get more chemo if I have to have a 4th course, and, of course, the next transplant. I could remove the PICC line and go to Houston to get another chest line put in when it's needed. That way I would be "line free" for a couple of weeks. Without a central line, though, I'll have to get stuck every time they draw blood for my frequent bloodwork checks.

No word yet on the status of the second donor. So I'll call my transplant coordinator this morning to get the status. We should know something this week about when the next transplant will take place. There's a lot riding on whether this second donor is willing and available. If she's not, then I have to continue chemo to keep the disease at bay while we search for another donor. Another perfect match might be hard to come by. So if you want something to pray for, please pray that the second (already identified) donor is willing and available soon.

Thanks for checking up on me.

Max

Saturday, August 25, 2007

Howdy,

I'm sitting in St. Joseph's Hospital due to an infection at the site of my CVC (central veinous catheter), the line in my chest. I noticed that it was itching Thursday during the day and then that night I could see and feel a big knot just above where the line enters my chest. That was not a good sign, so we went to the ER knowing that we had to quickly get any infection in my chest under control. This is extremely important given that my white blood count (white blood cells fight infection) is 100. Normal white count is 4,000 to 8,000. My white count is always low because of the ongoing chemotherapy. But right after chemo the white count goes to nothing. Shortly thereafter the red blood count plunges, so I have about a two week period of fighting low counts.

So, after getting antibiotics through an IV for a day and half, the infection is stabilized. But they are going to remove the line from my chest in the next hour. The thought being that with the foreign material in my chest, complete healing of the infection will be difficult. My new transplant doctor at M. D. Anderson, Dr. Hosing, is in agreement with the removal. But I'll have to have another put in before the next transplant. In the meantime, they will put a PICC line in my arm so that I can continue to get IV antibiotics that I will hook up this coming week at home. I was actually looking forward to removing the CVC in my chest after more that a year of having to maintain it. But a PICC line is the same thing except that it is in a vein in the upper arm, so it will have to be maintained too. After a week or two the PICC line can come out, so I might still get some relief.

Transplant wise, it now looks like I'll have the second transplant in Houston at MD. The doctor in Seattle changed his mind after talking to his colleagues and now favors a conditioning regimen of Cytoxan/TBI, TBI being total body irradiation. He originally said that this might be too toxic and put my liver at risk. But they now favor this regimen. MD on the other hand think they can get just as good of results without TBI. They use a conditioning regimen that goes by the acronym BEAM. They were emphatic that there are no studies that say that TBI has any better long term effects.

The conditioning regimen is the chemo that they use to finish killing off your bone marrow immediately before the transplant. Last transplant they did not completely kill off my bone marrow. This time they will. They typically will try the milder approach first in what they call a "mini-transplant." The more extreme approach is called a myeloablative transplant. Myelo means blood and to ablate is to kill off, hence the myeloablative transplant is one where they completely kill off your bone marrow. Both Hutch and MD would use the myeloablative transplant procedure, so the difference between them is just what regimen they use to do the ablation.

I talked to Dr. Hosing from MD yesterday, pumping her for information. The local doctors had already talked to her about the infection around the CVC site, to I knew I was already on her radar screen, so to speak. She advised that they did get insurance approval to proceed with the transplant and they would try to line up the donor in short order so that I won't have to get another round of the chemo that I had last week, which was aimed at killing off the lymphoma. Given the toll that that chemo is beginning to take on me, I won't mind skipping a fourth course. Timing will be important and a little tricky, as always.

Back to whether to do the transplant in Seattle or Houston, I talked to the doctor in Seattle Thursday to ask why he changed his mind about the irradiation question. In that conversation he said that their institutional approach favored TBI and that MD's favored BEAM. He said that the statistical results were about the same between the two and that I should choose a hospital based upon convenience, family support, out of pocket expense, etc. That sort of blew me away. I didn't expect that much honesty and lack of ego from a doctor! So based upon the support and convenience factor, I go to Houston again. That's how the decision has been made, although it's still subject to change. I really like the people in Seattle.

Gotta go. They're here to take out my CVC.

New Post

Here it is, August 15. I'm in St. Joseph's Hospital in Atlanta getting the third course of chemo, a regimen called Hyper CVAD part B. I'll get four to six courses total of this regimen.

From my last posts you will notice that I mentioned the sudden swelling of lymph nodes in the left side of my neck in April. They did a biopsy on a node in my neck in May at M. D. Anderson along with a Petscan and CT scan and a bone marrow aspiration. These tests clearly showed that the leukemia had spun off another disease, diffuse large cell lymphoma - the dreaded Richter's Transformation. They put me in the hospital there and gave me the first round of Hyper CVAD part B. This has to be administered in the hospital because one of the chemicals, Methotrexate, can cause kidney damage, so they put you in the hospital to monitor the kidneys and give you antidotes to the kidney damage.

I received the second course in Atlanta in early July. Then I went back to Houston for restaging again. Restaging is testing involving a PETscan, CT scan, bone marrow aspiration, and blood work. The good news is that the swelling went down dramatically after the first course and came down even more after the second course. The scans showed remarkable progress against the new lymphoma growing in my neck - in fact it was gone. But probably only for now.

Since the formation of the lymphoma occurred after the transplant and the DLI's (donor lymphocyte infusions) the first transplant was declared a failure.

So the plan now is to try to kill off the lymphoma - no easy feat - and proceed to a second transplant. So far it is encouraging that the lymphoma has responded well to the treatment.

In the meantime I decided to seek another opinion. I went to Seattle to the Fred Hutchinson Cancer Center, "Hutch" for short. They actually did the first bone marrow transplant years ago at Hutch and it is considered one of the premier transplant programs in the country. I was very impressed with their degree of organization and the amount of time the doctor there spent with me during my consultation. It's very possible that I will have the second transplant done there.

My transplant doctor at MDA didn't begin lining up the second transplant as soon as I thought he should have so I changed transplant doctors at MDA. They are still working on insurance approval before they can line up the second donor. And this is happening as I'm getting the third course of treatment, so I'm not too happy with the progress. I had two perfect donors identified last summer, and they are banking on that second donor still being available and willing to donate. But they won't know that until we go through the insurance exercise and actually make contact with the donor.

So there we are, somewhat in limbo for the next few weeks. We have to see how the lymphoma responds, how many of these treatments I can stand, and how the donor search proceeds. Then add to the mix deciding whether to stick with MDA or go to Hutch. It promises to be interesting.

In the meantime, Tech looks like they have a very good chance of beating Notre Dame in South Bend on September 1. My prediction is that we will be able to overcome the refereeing and "Touchdown Jesus" to come out with a close win.