It seems to us that last week's skin outbreaks continue to subside. The nurse and pharmacist that I see at the clinic agree. And still no sign of graft versus host disease. On Thursday, they told me to cut my tacrolimus dose in half. That's the immune system suppressing drug. I had kind of expected them to reduce it by a lesser percentage than that, as Dr. Hosing (transplant doctor) continues to express fears of graft versus host disease. We knew from our visit with Dr. Duvic (dermatologist) on Monday that she's pushing for a reduction, so I don't know if there's been a debate between the two on the extent of the reduction or not. Anyway, we're on day 3 of the new dosage, so we're continuing the symptom-improvement/gvhd watch.

After Dr. Hosing reduced my tacrolimus dosage on Thursday, it seemed to us that my resurgent MF symptoms had begun to back off by the weekend, much to our relief. I had an infusion appointment today (Monday) and also saw Dr. Hosing and the rest of my stem cell team. Her nurse agreed that it looked like I had improved from Wednesday. We're hoping this means that backing off the immune suppression drug is allowing the new immune system to start fighting the MF. Dr. Hosing had consulted with Dr. Duvic after last week's flare-up, and Duvic wanted to take a look at me today as well. We got the impression from Hosing that Duvic might want me to resume photopheresis treatments, but twice a week, not twice a month like we did during the first half of last year. We weren't looking forward to that possibility, but after Duvic saw me this afternoon, she says she wants to give the tacrolimus-reduction strategy some more time to work before trying anything else. She talked us down quite a bit today. She says that an MF resurgence after a transplant is not unusual. We're breathing a little easier tonight.

We just got back from our Thursday stint at the clinic. With the resurgence of some of my MF patches in the last week, Dr. Hosing sent me to see Dr. Dabaja, my radiation doctor from last fall, to get her opinion as to whether some localized radiation on those patches is called for. Having gone through whole-body radiation last fall, Dr. Dabaja said today that I have too many patches right now for more radiation to be feasible. It would pretty much require doing the whole-body thing all over again, which, besides being dangerous so soon after last fall, would also be ineffective. She wants to wait two weeks and see if the decrease in my tachrylimus medication, which began today, will cause my new immune system to start fighting my MF. Here's hoping. This puts us in the very uneasy position of just sitting around for the next few days waiting for things to happen. The best outcome, like I said, will be if the only thing that happens is that we start to notice that my MF patches begin to subside. The worst outcome is if I develop a bad case of graft-versus-host disease (gvhd). That's when my new immune system identifies one or more of my normal systems (typically skin, intestinal, or liver) as foreign, and attacks it. If that happens, we are supposed to immediately go to the MDACC emergency room. If they confirm gvhd, I think readmission to the hospital so that they can get control of the situation is common. We could also see a combination of a little bit of gvhd AND my new immune system starting to attack the MF. Dr. Dabaja says we should know within a week which way this is going to play out. So here we sit, watching and waiting. And hoping.

I've got a lot of catching up to do!
On Thursday night's post I forgot to mention that my wife got to go to lunch Thursday with an old friend who was in town from Florida. Thanks Bry!
Friday morning I had a bone marrow aspiration and bone biopsy appointment that went as well as can be expected. Other than that, we had a three-day weekend. So Friday, Saturday, and Sunday we did the home infusion procedure. I think we've got it down now.
Yesterday (Monday) we got a very good bit of news from Dr. Hosing, my transplant doctor. She handed us a test result that reads: "The post-transplant microsatellite polymorphism pattern is identical to the donor pattern . . . which is compatible with successful engraftment. No chimerism is observed. Microsatellite polymorphism analysis reveals that 100% of T-cells are of donor origin. Microsatellite polymorphism analysis reveals that 100% of myeloid cells are of donor origin." This is based on a gene scan they performed. Basically what it means (as we understand it) is that the stem cells given to me by my donor have fully engrafted in me and have completely taken over from my immune system. The word chimerism is derived from the mythical beast the chimera, a creature composed of parts of more than one animal. If chimerism HAD been observed in me, it would mean that some of my immune system would still be active in me. So "no chimerism is observed" is a good thing. I gather that a little chimerism is okay and that in most transplant cases it goes away, but to have achieved 100% engraftment at this stage is very good. As we understand it, the next big hurdle will be determining whether my new immune system is fighting my MF. (Just because I have a brand new immune system, it doesn't necessarily follow that it will do any better at fighting my illness than the old one did. Usually it does, but only time will tell.) I have a few new MF spots on me and a few resurgent old spots. The doctors (Hosing and Duvic) say that that's not unusual at this stage, and that it's still too early to expect the new system to be fighting the MF. But it's still pretty unnerving for us to see the MF coming back even a little after we've seen it slowly retreating these last months. Duvic's last words to us yesterday were "not to worry," so we're going with that as best we can.
We're off today (Tuesday) and will be back to the clinic tomorrow.

This week has been pretty routine. They've definitely cut my clinic visits back to three days a week for now. They say it's because I'm doing well, and I believe them because they're wearing stethoscopes.

Monday of last week Dr. Duvic biopsied a spot on the back of my right upper arm. Tuesday they let me know that it was positive for MF. She's prescribed a cream called aldara that I'll use for six weeks. It's supposed to provoke a local, limited graft-versus-host-disease response. No one seems to think this is alarming. They say my new immune system is still developing and not totally on the job yet.

Tonight (Thursday) I had a CAT scan. They made me drink a little more of the barium shake than usual, so I'm a little queasy right now. I have to stay up long enough to get over that, eat a little something, and take the evening meds. Tomorrow, the only thing we have scheduled is a morning bone marrow aspiration and bone biopsy. It's about the least fun thing you can do with your pelvis.

Sunday was fun. We had the whole day off from the hospital, and, most especially, our dear friends Tom and Kim drove into Houston for a visit that afternoon. Thanks guys! I had more energy yesterday (and today) than I've had in a while, so the visit was well timed.
Mondays are my stem cell doctor's (Dr. Hosing) day to be on the 10th floor, so I saw her today. She still says things are going well. If my online MDACC schedule is to be believed they're shifting me to a Monday-Wednesday-Thursday infusion clinic schedule starting this week. That can change of course if my counts took a downturn or something else comes up. But we didn't think I'd be eligible for a 3-day week until at least another 2 or 3 weeks went by, so we're very happy about that.

Even though I've been out of the hospital for almost two weeks, I've only gone out in public (other than MDACC) once, and that was to the grocery store on a weekday afternoon, when we figured ito wouldn't be very crowded. They've done such a good job of cautioning us about exposure to germs at this point that we're both very paranoid about going anywhere other than where we have to. But I have to admit that I'm getting cabin-feverish now, so tomorrow (Tuesday, a day off) we're going shopping! Hey, it's a start.

I went to the hospital yesterday (Friday) for my blood testing and outpatient infusion therapy. My platelet levels continue their slow and steady climb, but the red blood cell and hemoglobin counts are still down, which makes me very, very lethargic. My wbcs, which had sagged below normal, zoomed up to above-normal levels after my neupogen shot on Wednesday. That will come down since it's artificially induced. In fact it may already have come down, but we won't find out until Monday because (drum roll and cymbal crash, please), they've given us the weekend off! We have to do the home infusion thing both days, for which they gave us all the supplies, but the great thing is to not have to be in the hospital bed in the ambulatory treatment center for four hours. We've already done today's infusion, and we're both getting more comfortable with it. Today was the first time we've hooked it up without a nurse overseeing things, but it all went okay. We're thrilled that they think I'm doing well enough to let us have so many days off already. We'd had the impression that the first two weeks out of the hospital would require going back there every day.

I should've posted this morning when I had more energy. We almost had a day off from the hospital. They let us do the saline/magnesium drip at home with a portable unit. We had received instruction on how to do that, but when the time came this morning to do it, we were unclear on a few points, so we went in to MDACC to have a nurse observe and instruct as my wife hooked me up to the unit. It involves connecting the liter bag of saline to a battery-operated pump with tubing. The tubing runs through the pump and out to me, where she has to plug the line into the tubing coming out of my chest (my central venous catheter). I think you can see how we might be a little nervous about it. We had to be at MDACC at 2:30 today for a bone density test, so we just went over to the Ambulatory Treatment Center so the nurse could talk us through it. My wife did great. This is Number 695 in the ongoing series, "Things I Never Thought I'd Have to Ask My Wife to Do for Me." Thanks, dear.

I'm still here. I would have posted Superbowl Sunday since my energy level revived late Sunday afternoon, but, well, it was Superbowl Sunday! It was an interesting day, and not always in a good way. We went to MDACC at 10, got back at 4, after they gave me my usual liter of saline with a magnesium chaser. I was actually looking forward to taking in the last of the interminable pre-game nonsense, as one of my goals while in the hospital was to get out in time to watch the Superbowl back at the apartment. We'd been home about half an hour when the fire alarm for our building went off. We all dutifully evacuated the building. My wife and I went to sit by the pool, where we could still faintly hear the alarm. It seemed to take the HFD quite a while to get here. When they did, it was determined, as far as we could tell, that some yo-yo had been grilling on his back porch (against the rules) and had set it off. We got to go back in about half an hour before kickoff. We watched the game, had some game food, watched Springsteen, and then in the final minutes of the game, I had a migraine. I've had maybe 20 of them in my life, starting when I was a senior at UT. They're ocular migraines, causing fairly spectacular, jagged, psychedelic light shows and some temporary blind spots. They usually pass in an hour or so. I decided to see if the darvon they gave me at MDACC would have any effect on it. It did! About ten minutes after taking it, it shut right down. The only thing I've ever found that had the same effect is Tylenol 3 (with codeine). But I'm not allowed any Tylenol or aspirin or any other drug that masks a fever right now. So the game ended, the migraine was gone, and I could have posted then, except that I was on darvon, which makes me pretty loopy. Then Sunday night I had a bad night's sleep. Don't know why. Could have been the migraine after-effect or the darvon, but the end result was I was out of it yesterday. This morning I feel pretty great, though. Yesterday we met with Dr. Hosing (my stem cell transplant doc) and Dr. Duvic (my dermatolgist and my original doc here). They both pronounced me to be doing well. Hosing said it will be 1 to 3 weeks before she expects my new immune system to start attacking my disease. (We thought, just based on visual evidence, that it already was, but what do we know?). And Duvic took a biopsy of a spot on my arm because she thought it might be MF. I was surprised that she was surprised that I might have an MF spot. Especially if they think my new immune system is not on the MF-attacking job yet. Again, what do I know? Anyway, neither doc thought anything seemed to be amiss.
Okay, times up. We're off to MDACC.