Day 50 Coming To A Close

Dr. Hosing had some pretty good news for me last Thursday. My chimerism test came back showing that my T-cells (white cells) and myeloid cells (red cells) are 100% donor cells. So my old system is pretty much gone. I expected that to be the case since it was planned to completely wipe out my old marrow using chemotherapy before the transplant. So if they completely ablate the old marrow, how could the chimerism test be less than 100%? But it was still nice to see the official report.

With the first transplant, we didn't completely ablate my old bone marrow. That's the usual approach since the new cells usually finish the old marrow off. That is less dangerous than a full ablation since with a complete ablation if the new cells don't engraft you are left with no bone marrow. Chances are only about 4% that you won't get engraftment, but nevertheless, it is a little worrisome since you can't live long with no bone marrow. If the engraftment does fail they go back to the donor for another emergency donation, so you still have a chance. Since the first transplant failed with just a partial ablation of my old bone marrow, we had to go with the complete ablation the second time in spite of the additional risk. We had to make sure we got it this time.

My new donor is the same blood type as my first donor, A positive. So I won't be the guy that had three blood types in his life. I'll be sticking with A positive. I was O negative originally.

I got my second negative CMV test in a row. So instead of having to infuse Foscarnet every 8 hours around the clock, I only have to have one infusion a day. That makes my life a lot simpler. I'm still getting magnesium via IV every day, so I just hook up the Foscarnet and the magnesium to run concurrently.

Dr. Hosing also changed my magnesium pills (I get magnesium both ways) to a different kind that is easier on the stomach. That's an improvement in my quality of life as well.

I woke up on the 26th with a little skin GvHD on my face and forehead. So I went to the clinic to get the APN (advanced practice nurse) to look at it. She agreed that it was probably GvHD and prescribed some ointment for it. The ointment worked like a charm and it cleared right up. A little GvHD is actually welcome, if it can be controlled, since it is evidence that the new system is looking for foreign cells to kill. But it's a fine line. I want the disease to be killed off, but I would like the rest of me to escape.

So, all in all, it was a pretty good week, especially since the girls were here to spend Christmas with me. We all went out to my brother's and sister-in-law's house for Christmas dinner. Annette had a delicious dinner prepared and a new Wii game that we had to help hook up. Trust me, we didn't mind. My niece and her hubby (both Aggies like my donor) came over after dinner to supervise the Wii hook up. So we had a house full of adults and almost adults going crazy playing Wii. That was really fun.

So even though it was a very unusual Christmas, it was a good one.

I hope everyone had a merry Christmas. Thanks for all the cards and well wishes.

Day 43

It's Saturday evening and things are going okay. My counts are up. They switched my anti-CMV medicine from an oral medicine to an IV medicine. The oral medicine was Valcyte and was suppressing my white count. So now I'm on Foscarnet which is stronger and more effective, but is harder to administer since it can be done only through an IV. I'm on home health care 5 days a week now. Home health care just means that they have the meds delivered to me at the hotel and I hook up the IV's myself. Remember I have a central veinous catheter in my chest so I just hook up to that - sort of like going to the gas station.

I got the results back from the scans. Dr. Hosing, my transplant doctor, said she thought I was doing fine. I read the reports and was happy enough with the CT scan report, but the PET scan report didn't seem so positive. But Hosing said she put more stock in the CT scan. Plus those scans were done at days 33 and 34, so the new cells only had a couple of weeks to begin to work against the disease. Day zero is the day I got the stem cells. It took a little over a week for the donor cells to engraft; then it took another week for my blood counts to come up. So, out of the those first 33 days, 16 or so were spent just beginning to "ramp up." They will re-stage again on Day 90 or a little earlier. That will be more informative.

In the meantime, we are on GvHD watch. Typically they expect GvHD to appear between Day 40 and Day 80. They are maintaining my anti-rejection drug level at the low end of the target range. They are doing this to allow the new cells to attack more readily. I want the new cells to defeat the disease. But by keeping the anti-rejection drug at low levels we are taking more of a chance of getting GvHD. So, it's sort of a cat and mouse game.

I'm watching the Las Vegas Bowl football game tonight. BYU is playing UCLA. The BYU quarterback is named Max Hall. It's pretty cool to hear your name over and over on national TV. I hope I play well tonight. LOL

Out of The Hospital

I got out Saturday morning. The CMV test wasn't back yet, but I felt fine and my temperature was normal and steady. So they let me out. I think they just needed the room. Ha.

The PharmD called me Saturday afternoon and let me know that the CMV test did finally come back and it was back down to 6. He expects that to go down to zero with today's test. After that they will start to reduce the level of Valcyte, which is the anti-CMV drug.

I've got my usual Monday appointment at ATC at 11:30 this morning and I've got to get blood work done before that. I'll also have to go to ATC on Wednesday and Thursday. I might have time to go by and see a transplant friend of mine who volunteers on Monday's before going to ATC.

Day 36

I'm still in the hospital - G11, the transplant floor. As it turns out the cause of the fever is likely a small outbreak of the cytomegalovirus, CMV for short. They measure this in terms of the number of actively infected cells in a million white cells. They treat if the CMV count is 3. That's right, 3 in a million. My count was 6 on Tuesday and 10 yesterday.

CMV is a common herpes virus that 80% of the population has. It activates in people with compromised immune systems like leukemia and HIV patients. When your T-cell count goes below 100, CMV can become active. In HIV patients they worry about an eye disease called CMV retinitis and in leukemia and bone marrow transplant patients they worry about pneumonia. CMV can cause a form of pneumonia that has a 35% mortality rate. I guess that's why they get excited about a count of 3.

I still got my scans done this week. They tried to wheel me down to the 3rd floor, but I refused to go in a wheel chair. So the transportation assistant (yes, they have a transportation department) walked pushing an empty wheel chair and I followed along behind walking and pulling my IV tree. The PET scan was done on Wednesday on the third floor, and the CT scan was done yesterday. They also did the BMA (bone marrow aspiration) Wednesday afternoon in my room. So I should still be able to get an idea of how I'm doing by next week.

I might be able to get of the hospital tomorrow if the CMV test that is being run today comes back with a count of 10 or less and my temperature remains normal. The nursing assistant recorded my temperature last night at midnight incorrectly, which didn't do my chances of getting out today any good. My temp for the last 24 hours + has been 37.0 or less (centigrade). 37.0 C is 98.6 F. She recorded it as 37.5 instead of the 36.5 that I remember. But with the CMV count increasing I wasn't getting out today anyway. Nevertheless, I now have my own record posted in the room which they will have to initial. When the CMV count drops I am not letting an incorrect temperature recording keep me here.

As an in-patient I didn't have to sit in the waiting room on the 3rd floor for my PET and CT scans. They just walked me through a back entrance into a large staging and recovery area to wait my turn. As an out-patient you don't even know that this recovery area exists. But as I was sitting there in my curtain cubicle #19 it sort of got to me how many people go through this one area. There are several areas similar to this in other parts of this building and the new building across the street. Most patients who came in were in a bed or wheel chair. Those in a bed were out of it and most of those in a wheelchair were partially out of it. I never really thought about it until then, but cancer patients seem to be able to put their chin on their chest and sleep while sitting up. Most normal people would have a hard time just trying to touch their chin to their chest. That made me think about Steve S. from church who was suffering from brain cancer but nevertheless went on the church ski trip to Colorado the winter before he passed away. He slept on the bus with his chin on his chest as we drove through the mountains. I don't know if this is some form of resignation or not. Yesterday there was gentleman across the "hall" in curtain cubicle #15 who was, I thought, asleep in his wheel chair. A nurse came to find him and was calling his name, Mr. Tunstall, I believe. He didn't respond to her "Mr. Tunstall, Mr. Tunstall, Mr. Tunstall." So she started patting him on the shoulder and saying "Mr. Tunstall, Mr. Tunstall, Mr. Tunstall. Open your eyes, Mr. Tunstall. Open your eyes." Finally, and without lifting his head off his chin, he growled "My eyes arrrre open."

I don't know why I told you about that except to highlight how pitiful many of these cases are. It's even more heart wrenching when you see children going through this. Many people need prayers every day. Mr. Tunstall will be in mine.

I hope I never fall asleep with my chin on my chest again.

Day 32

I guess I spoke too soon. Sunday evening I developed a low grade fever. Yesterday morning I woke up at 5:00 and took my temp. It was 101. So I showered and took off to the emergency center. As it turns out maybe I should have waited until 9:30 and kept my appointment at the ATC clinic. When I have run a fever in the past, it's always higher when I first get up. So I should have given it an hour or two to see if it would come down. As it turns out, MD doesn't count a fever until it reaches 100. I have more confidence in the ATC staff to make an informed decision than the emergency center staff.

Once you start down the emergency center (EC) route it gets complicated. They drew blood for blood cultures, and then started IV antibiotics and kept me there all day. And then they admitted me to the hospital, where I am now. I'll be lucky to talk my way out of here today. It's likely they'll keep me until tomorrow. So here I sit, sequestered on G11, the transplant floor, in an isolation room. My temp is back down this morning to 98.7. All this messes up the re-staging schedule of the scans unless I get out today. I missed the bone marrow aspiration yesterday.

I just saw "the team" of doctors, nurses, and pharmD. Dr Waino is the doc making the rounds and he just told me that the earliest he would let me out would be Thursday. That will give him just barely enough time to get the blood culture results back and ween me off of the IV antibiotics. If that doesn't work out then I'm here until next week. Bummer.

I'll never complain about being "stuck" in my hotel room again.

Day 30

This was another uneventful day. I'm on home health care now for four days a week including the weekends. That just means that they send me the medication and I hook up the infusion myself. I don't use an IV tree but a little pump that fits in a "fanny pack" style bag, so I'm mobile even though I'm hooked up. I'm just getting saline with magnesium in the IV, so it's no big deal. I've got a CVC (central veinous catheter) in my chest so I don't have to start an IV. Actually I've had the CVC in since the summer of 2006.

This will be a busy week since they will be restaging. Tomorrow starts with a bone marrow aspiration, BMA for short. That's essentially a long needle in the hip bone followed by a bone biopsy which is done with a hollow cork screw type instrument which they use to extract a bone sample. Fortunately, as gross as that sounds, it's done with a local anesthetic. Although it's sore for a few days it doesn't really hurt much. Getting a tooth filled is about the same.

Wednesday I get a PET scan and Thursday a CT scan. The PET scan consists of an injection of radioactive glucose followed by an MRI-like scan. Cancer cells absorb glucose faster than benign cells so the MRI picture shows up the parts that glow. If you "light up" the picture you have a lot of active cancer. Hopefully I won't light it up much. The CT scan just picks up masses and doesn't distinguish between cancer and benign cells. But it does give them size and location of masses.

Next week we'll have the results back and it will give us a good indication of how the transplant is progressing. They'll repeat the restaging at Day 60 and/or Day 90.

Thanks to everyone for the comments and the cards. This is a slow process and more than a little boring. So it's nice to hear from everyone.

How about Tech's new football coach? Looks like a good hire to me. Since Tenuta may not stay on as the defensive coordinator, the bowl game will be interesting with him coaching the team. Surely Paul Johnson will have some input, but who knows. Johnson will not coach Navy in their bowl game and has said that he wouldn't coach Tech in theirs. That might make for a few tense weeks around the athletic offices, unless Johnson makes a deal to keep Tenuta on board.

Day 26

Things are about the same. I'm getting magnesium through IV every day, plus now taking a couple of magnesium pills. This is not going to be good for the stomach. But they have to get the magnesium level up.

The APN told me today that they saw a couple of CMV cells in the blood stream today. CMV is cyto megla virus. Most people have a dormant copy of CMV floating around in them. With a transplant patient, though, the dormancy can change to active easily and cause flu like symptoms. So they will be watching this closely and will begin to treat me for it if the level builds up. I signed up Monday for a Phase III study regarding a new drug which keeps CMV dormant. The study is a double blind test. So I don't know if I'm getting the real drug or a placebo. However 2/3 of the study participants will get the real thing, so odds are good. Even if I get a placebo, they watch and test all participants closely, so treatment could get started earlier if I did come down with CMV.

This Sunday is Day 30. So next week they'll do a complete restaging of the disease which will include a chimerism test, bone marrow aspiration, PET scan, and CT scan. Lots of fun. It will take until the following week to get the results back. Those tests will tell us how far along the transplant is.

That's all for now.