Day 85 - GO JACKETS!

Today's the big day. Tech vs. Georgia. The winner will be the one who has the fewest turnovers, which probably translates into who's QB makes the fewest mistakes. Although Reggie Ball, Tech's QB, has had a spotty career, he's still a senior and has had many big games. Stafford, GA's QB is a true freshman who has had only one big game (against Auburn - where AU turned the ball multiple times). I think Tech's defense will put a lot of pressure on Stafford and he will cough up the ball a few times - Tech wins.

Medically, today is Day 85 post transplant. I had an infusion of a big bag of Rituxan yesterday here in Atlanta at St. Joseph's hospital. That was an 8 hour day in "the chair."

As you will recall from previous posts I'm on a protocol to get some of my donor's lymphocytes to boost my "new" system. My old system has fought back against the new system and gained some ground on it, unfortunately. So the donor lymphocytes, which are white blood cells, are being brought in to reinforce the new system. The idea of the stem cell transplant is for the new system to completely kill off what's left of my old diseased system after the pre-transplant chemotherapy. If the old marrow and blood system doesn't cooperate fully, then lymphocytes (white blood cells) from the donor are brought in as reinforcements to finish killing off the old marrow and blood cells.

Along with lymphocytes they also treat me with Rituxan, the monoclonal antibody that kills CLL diseased cells. They will treat me twice with Rituxan before the donor lymphocyte infusion (DLI) and twice after. All treatments are roughly a week apart. The Rituxan is supposed to beat back my old diseased cells which are trying to return. Using the military analogy again, we are going to bomb the enemy lines (with Rituxan) and then rush them with the help of the reinforcements.

Yesterday's infusion was the second of the two pre-DLI Rituxan infusions. Next week I will go back to Houston to get the DLI. I'm suppose to get the DLI on Wednesday at 1:00, then I'll hop on a plane and come back home. I'll get at least two or three more DLI's after this one, so this will go on through the winter. I won't have to get Rituxan with the subsequent DLI's, though.

We had a little delay in getting this second Rituxan infusion when I turned up positive for Hepatitis antibodies, meaning I might have contracted Hepatitis. They drew blood before I left Houston to test for live Hepatitis viruses. After a week and half the test came back negative. Whew! Rituxan and Hepatitis don't mix, so if the live virus test had been positive, I would not have been able to get the Rituxan, which would greatly reduce the chance of the DLI working. If this series of DLI's doesn't work I will get another transplant, which wouldn't be a lot of fun.

Interestingly, my red blood count may have started to climb. It was 4.07 Tuesday, the first time above 4 in a long time. It dropped back to 3.85 yesterday (Friday), but my white count showed some stability yesterday for the first time in a long time. The white count hasn't been able to stay up without the help of Neupogen shots since before the transplant. But yesterday it was still up versus Tuesday's readings, and I didn't need my heretofor semi-weekly Neupogen.

The increase in the red blood count had stalled out about a month ago. This was about the time the lymph nodes in my neck had started to come back a little, too. In retrospect this may have been about the time the transplant started to falter a little. So if these counts continue to make progess it could be that the new system is back on track defeating my old leukemic cells.

Meanwhile, I've got a good amount of energy. I've worked every day since being back home. Well I did take the first day back off. I've caught up on some chores around the house, too, although I have to wear a mask and gloves if I do much outside. Dr. Khouri also consented to letting me have some fresh fruit if it has a thick peel like bananas and oranges do. Lynda has to peel it while not touching the inside while I catch the inside without touching the outside. (You ought to see that circus.) Apparently fruit and vegetables grow various bacteria, mold, etc. on the outside which is harmless to healthy people but can be deadly to a transplant patient. I still can't have any uncooked vegetables, though.

But progess is being made and it is nice to be back home. Even problems at work don't seem like big deals any more. It's all a matter of perspective, I guess.

Day 74 and I'M HOME

After a long day yesterday we did finally get to see Dr. Khouri. He didn't make rounds in ATC since he has inpatient rounds for the next two weeks. He made a special trip to see me after Lynda and I pressed the APN for an answer about leaving this week.

He agreed that with my current schedule of just one infusion per week it would be okay to come home this week. He had already approved of me going home for Thanksgiving, so I just got out early.

I had my first Rituxin infusion of this new protocol yesterday. I'll have my second one next week in Atlanta. The week after that I get an infusion of the donor's lymphocytes (white blood cells). Then I'll get Rituxin the following two weeks after that. This protocol is to give the new system a boost, reinforcements if you will.

Think of a bone marrow transplant like the war in Iraq. We bombed the existing army to soften them up and then attacked with our army. We won the first battles handily, but the existing forces are now fighting back. In a bone marrow transplant we bomb the existing marrow with chemotherapy and then attack with new cells from a donor. But my old marrow cells have decided to fight back. So we are going to bomb them again with Rituxin and send in more troops.

We'll probably do three or four DLI's (donor lymphocyte infusion) over the next several months.

Ahhh, it sure is good to be home.

Day 71

On Monday Dr. Khouri will start me on a five week regimen that includes Rituxin and an infusion of lymphocytes (white blood cells) from the donor. We'll start with Rituxin this Monday and get infusions of either Rituxin or lymphocytes every Monday for five weeks. It will go Rituxin, Rituxin, Donor Lymphocyte Infusion (DLI - everything has an abbreviation here), Rituxin, Rituxin for the five weeks. I'm thinking that he will allow me to get the Rituxin in Atlanta at least for the last two infusions. The DLI will fall the week after Thanksgiving depending on the donor's schedule.

All of this is to boost the effects of the transplant. As previously discussed, the lymph nodes have not gone all the way down and the white blood count has been weak. The Rituxin will attack the CLL cells in the lymph nodes and the donor lymphocytes will provide "reinforcements" for the new system to attack the disease.

We may do this five week process several times. If so I will be making short trips back to Houston through the winter.

Changing subjects, go Jackets!. Tech should beat UNC today. But if we don't, all we have to do is beat Duke next week to be in the ACC championship game.

Poor Wake Forest is having their best season ever and they are still underdogs in tonight's game in Tallahassee. Beat FSU and they might get some respect.

Maryland should beat Miami, given the ongoing saga in Miami. And Boston College will cream Duke, so that division will still be a three way race.

Auburn will beat Georgia in Auburn, although the visiting team usually wins this one - just not this year.

Have a good weekend.

Day 68

Just as I anticipated, Dr. Khouri took me off Tacrolimus, the anti rejection drug, on Monday. The lymph nodes are still detectable by feel in the neck and under arms. Dr. Khouri is "taking the leash off" the new system so that it can attack the CLL disease.

This is all part of the balancing act that apparently goes on during the last half of the 100 day post transplant period. The trick is to arrest the disease while the patient is here in Houston where they can tinker with the meds under close observation.

A good thing about being off Tacrolimus is that I now don't have to take as much magnesium, which upsets the stomach. Since I was on just magnesium sulfate and and one anti-viral medication via IV, they have discontinued the daily IV's. I may have to get some more Rituxin (monoclonal antibody which attacks CLL cells) to help fight the disease, but that won't be a daily event. So my daily schedule just got a little freer.

So for the next two weeks we are watching out for GvHD and getting a little Rituxin as we coast (knock on wood) into a Thanksgiving break.

I don't know what they put in my IV Friday.....

but I must have been hallucinating when I made those football predictions! Whew, at least Tech won. And I was happy to see the Hogs win in Columbia, too.

The UGA fans are really ripping Mark Richt (head coach) in the AJC (Atlanta Journal-Constitution) sports blogs. The only thing they haven't accused him of is assassinating JFK. Hummm, maybe that WAS him hiding between the hedges on the grassy knoll.

Who would have thought that Wake Forest would be where they are? And, they really ought to be undefeated - if they hadn't choked in the fourth quarter against Clemson they would be. Funny, now the big game for Tech fans on the Saturday after Thanksgiving might just be Wake Forest vs. Maryland.

After watching Clemson play the last two weeks, I wonder what high school team stole Tech's uniforms and went to Clemson three weeks ago. I don't know if Tech would rather play Wake in the ACC championship game or Maryland a second time. BC isn't completely out of it either. I think I would take my chances against Maryland again.

So much for football (until Thursday night anyway). Dr. Khouri should be making his rounds tomorrow, so I'll get to try to coax more information out of him. At this point, the focus is on the lymph nodes and how much they have come down.

Day 64 Football

Rhys, I didn't want to give you an unfair advantage in the office pool, so I waited 'til today to post my predictions. LOL

But, I guess I'd better post my guesses while I still have time.

I think Tech will handle NC State. State can beat anybody, but their season is quickly unraveling and if Tech can get up early it will be a blow out. If Tech sputters in the first half then this will be a game.

Georgia should handle Kentucky. But I do admire KY for scheduling Georgia as their homecoming game. Maybe they know something I don't know. But Georgia has had Kentucky's number for a lot of years, sort of like Florida owning the Bulldogs for so long.

John, you're being modest about Clemson. They will demolish Maryland. The quarterbacks are about equal, but Clemson's line and the home field advantage will be way too much for the Terps. But I do like the fact that the MD QB is an ME major. Very alphabetical today.

The big game in the ACC is Boston College at Wake. I take BC on this one because of injuries at Wake. That will put BC in the driver's seat in that division. Wake still has several tough games left to go this year.

How about Arkansas at South Carolina? I think the poultry will pull an upset in this one. But that might set up Arkansas to beat Tennessee in Fayetteville next week.

Speaking of Tennessee, they will beat LSU in Knoxville I do believe. Home field advantage again being the deciding factor in this one.

VT will beat the failing Miami thugs in Miami.

In this area of the country it's all about the Oklahoma teams coming to Texas. OU at A&M, and Oklahoma State at Texas. I'll take A&M at home and I'll take OSU surprising Texas. UT has just squeaked by for a few weeks, sort of like So. Cal. which lost last week. If OSU had a defense they would really be dangerous.

It's already 65 degrees here and sunny and on its way to 75 and beautiful today. Think I'll go outside for awhile.

Day 63

Just got back from the ATC (ambulatory treatment center) and today's in patient infusion of the usual stuff - no big deal. They may reduce my trips to the ATC to just twice a week pretty soon. I still give myself infusions all the other days, so it really doesn't matter much. But you do have a little more freedom when you hook up the infusions yourself. Plus, you don't have to lay around a hospital room all morning.

The magnesium levels are up because Dr. Khouri has reduced the Tacrolimus dosage. Tacrolimus is the anti-rejection drug which also strips the magnesium out of your body. They are reducing the amount of magnesium in the fluid IV and making me more dependent on the pill form. All that in preparation for going home.

November will be an interesting month as they get me ready to go home. There is some strategy to the game beginning to take shape.

Dr. Khouri is getting more aggressive about going after my enlarged lymph nodes. The lymph nodes in my neck and under arm area are still enlarged, indicating some residual disease in them. When I get back from Thanksgiving, they will run a PET scan, CT scan, and a bone marrow aspiration/biopsy, which will tell the tale about any residual disease.

Dr. Khouri has reduced, and will probably soon eliminate, the dosage of Tacrolimus. It seems to me that he is being aggressive in reducing the Tacrolimus in order to get the lymph nodes down while there is still some Campath present to act as a buffer against GvHD (graft versus host disease). In a way, the Campath reduces the effectiveness of the new cells. And so does Tacrolimus. So I believe that having both in my system has arrested the new immune system to the extent that it hasn't yet eliminated the residual CLL disease in the lymph nodes. But if the Campath wears off and the Tacrolimus is at low, or zero, levels, GvHD could rear its ugly head.

So my anticipation is that Dr. Khouri will eliminate the Tacrolimus on Monday in order to get the new system to go after any disease left in the nodes. Then when I come back here after Thanksgiving he will run the scans to see if there is any disease, and then put me back on Tacrolimus in anticipation of the Campath wearing off. Then he will see me again in early January to re-evaluate.

To refresh your memory, Campath is the monoclonal antibody that targets cells which have a certain protein called CD52 on their surface. Both diseased as well as healthy cells have this protein, so Campath not only destroys CLL cells, but also weakens your white blood cell counts. But that's okay because it means that it will inhibit the donor T cells which cause GvHD (graft vs. host disease) rejection issues. That is the reason that my white count won't stay up, but it also keeps me from getting GvHD. Apparently Campath can stay around in your system for a few months. I got Campath as part of the pre-transplant chemo back in August.