Day 59 and getting closer

Dr. Khouri is going to let me go home for a few days for Thanksgiving providing things remain stable for the next couple of weeks. At the same time he is reducing my Tacrolimus dose to just 1/2 mg per day, down from 1 mg per day. This is to induce the new cells to attack the CLL. There are still nodes noticeable in my neck which he wants to reduce in size. Within the next couple of months these lymph nodes should go back to normal size if things work as planned.

Reducing the Tacro level also increases the risk of GvHD. If I get a bad case of GvHD the trip home will have to wait. The good news is that the residual Campath should continue to suppress the T cells and, hence, the GvHD. So the next couple of weeks should be very telling.

I'll have to return to MDA after Thanksgiving for scans and bone marrow tests. But maybe they won't keep me but a week or so. So the end of this part of the ordeal will be over soon. I'll have to return for frequent scans and checkups over the first year and twice a year for the next five years.

Thanks to everyone for their thoughts and prayers for me through this very interesting adventure. Keep up the good work - please! Also, please remember that this place is crawling with people who need all the prayers they can get each and every day. It's hard to feel sorry for yourself here because around every corner is someone in much worse shape. At the same time it's hard to find someone who is not upbeat and determined! After going through cancer treatment your outlook on many things changes. Things that used to be important aren't so much any more, and vice versa.

Enjoy each and every day.

Day 56

I get the impression that orange is not Cathy's favorite color. LOL. Whoa girl, whoa.

Well Dr. Khouri was a "no-show" today. So no firm news on what he might let me do over Thanksgiving. But I have a good feeling I'll get to go home for a few days. He will be making his rounds on Monday, so we'll see then.

The white count was down again today, so I got another Neupogen shot. There is progress being made towards getting me ready to get out of here one day. They reduced my Tacrolimus level last week. This week they are reducing the magnesium levels in the IV and upping the number of magnesium pills that I take.

There's not many interesting football games tomorrow other than the Tech and UGA games. There is, however, the Tennessee game at South Carolina. Hummm, Spurrier may pull off an upset in that one. Give Spurrier another couple of years to recruit and the SEC may have to contend with him again. That's assuming he can get people who actually want to play for him more than they dislike being in Columbia (sorry Carroll). I still have to go with Tennessee in this one, although it will be close. There is no love lost between Phillip Fulmer and Spurrier so that should be a show.

Notre Dame will win easily over Navy because Navy's QB broke his leg in last week's game.

Those are the only games of much interest to most of us. Of course, if you live in Texas you are interested in the Texas and Texas Tech game which Texas will win. Or you might care about Oklahoma losing to Missouri since OK lost Adrian what's his name last week. The Aggies should beat Baylor, but you never know which Aggie team will show up sometimes, plus Baylor has a more competitive team this year than in years past. But those games fall in the "who cares" category if you live east of the Mississippi.

Oops, I forgot about FSU versus Fridge's Turtles (that's Maryland, girls). Who would have thought two or three years ago that this game could be so easily overlooked? What's wrong with FSU this year, other than the fact they just stink? Why can't Tech play them THIS year? It's hard to pick against FSU after so many years of domination in the league, but I reluctantly have to go with the Terps at home in this one.

Ahhhh, college football. That, Frasier reruns, and Texas politics keep me entertained.

Day 55 & VT is whoopin Clemson

As I said last week, it would be tough for Clemson to beat both Tech's back to back. VT seems to have caught on to the idea that you have to stop Clemson's running game, even if you have to stuff the line and risk giving up a pass play. But Clemson's QB is not a great passer. Clemson's strength is it's running game, not it's quarterback play. When you start a senior for the first time at QB you know the talent may not be there. UGA seems to have discovered that, too.

What in the world Tenuta (GT's defensive coordinator) was thinking is a mystery to me. But Clemson played an almost perfect game against GT. That's hard to duplicate two weeks in a row, especially against VT and Frank Beamer, who's team has been down but can't be expected to stay down. So no surprise tonight.

The former World's Biggest Cocktail Party will be interesting for awhile Saturday. If UGA can't get up for this one they will have a long season. But it's not so much a question of getting up for the game as it is about the talent pool on each team. Gators should win this win one pulling away in the second half.

Tech, I think, is questioning itself after such a poor performance at Clemson. Miami will win a close one there, probably by 10 or fewer points. Miami is a wounded animal and GT is questioning their manhood.

Worse news is that if we do lose that one, we'll lose to NC State in Raleigh next week, too. Then we'll be relegated to playing someone like Louisiana Tech in the Two Buck Chuck Bowl in some God forsaken place. And we all know how Chan Gailey's teams play in third teir bowl games.

More weak minded predictions tomorrow.

I may get some idea from Dr. Khouri tomorrow about when I might get to come home. It's still a little early to get too optimistic, but it makes for good speculation.

Day 52 - Just 48 more to go, hopefully

Well the white counts continue to go up and down. They go down on their own account and come up due to Neupogen shots. I had another one today.

The red counts continue to inch up. In fact the overall red count was 3.98. I haven't seen it above 4.0 in quite awhile. Hemoglobin and hematocrit are nearing normal levels. So good news there. Platelets are hanging in there around 220.

Dr. Khouri tweaked my Tacrolimus Friday. No, get your mind out of the gutter. Tacrolimus is the anti-rejection medicine. He reduced it down to 1 mg per day from 2 mg per day. He wants the new system to work on the disease (CLL) more. Think of the new system as a pit bull on a leash. Dr. Khouri is going to let the leash out. There are still lymph nodes in the neck and under the arms that he can feel. Plus the CT scan from 22 days ago showed that the lymph nodes were still there in the chest and abdomen, although they were generally the same size or a little smaller than they were in the previous scan.

Reducing the anti-rejection medicine theoretically leaves me more prone to GvHD (graft versus host disease). But he says that the Campath, one of the pre-transplant monoclonal antibodies, would help keep the GvHD at bay. As I near the 100 day mark I think he will want me to be on as small a dose of Tacrolimus as possible. I will be on it at home for at least 3 to 6 months after I get home.

At the Day 65 mark they will check the percentage that the new cells have taken over from my own original cells. The new cells were 92% of the total cells at the 30 day mark. So I'm hoping that at Day 65 it's closer to 100%. With the white count still weak, it's doubtful that it will be 100%.

Around Day 90 they will repeat the CT scan and Bone Marrow Aspiration (BMA) and probably the PET scan, too. Those tests will give them a very good picture of where the disease is. It's possible that the CLL won't be there at all. If those scans are okay and my counts are up and stable, then I get to come home. Whoopee.

Ouch - that hurt!

Those puuuuurple tiger people were pretty rough on the Jackets. The Clemson line was just massive on both sides of the ball. Speaking of Ball (Tech's QB), he was not sharp tonight. That didn't help, but Clemson definitely controlled the line of scrimmage all night long.

Congratulations to Clemson.

There could be a rematch, though, in the ACC championship. But, Boston College, Wake Forest, and Maryland are still in the hunt in that division of the ACC with BC holding the edge by virtue of their earlier victory over Clemson. Tech has to beat Miami next week to hold a pretty good advantage in their division of the ACC.

I thought I was safe with my only prediction of the week, that the Bulldogs would win. You see, both Mississippi State and UGA are the Bulldogs. So I couldn't miss that one. I'm surprised no one caught me on that one. Laura even missed it!

I'm glad I'm in Houston so that I will miss most of the ribbing from my Clemson friends. I won't be checking the comments for a couple of days, either. LOL

Day 48

Saturday will be Day 50. A Tech win would surely make my half way mark a great day, but you orange tiger people are being pretty rough on me. Barring a 110 degree fever, I will be glued to the TV Saturday night. LOL

In deference to Charlie and Peggy (Madam Chairman), I'm impressed with Wake this year. They still might contend for the league championship this year. Too bad they choked in the 4th quarter against Tigger, but maybe they can overcome that.

I can't believe that Clemson will beat both Tech's this year. That's two tough weekends coming up. The Jackets have Miami next week, so I hope we are not looking past Clemson. But Miami has half their convicts, err I mean players, suspended.

Ahhhhhhhh -- I just LOVE football season.

Prediction #1 this weekend: The Bulldogs will win.

Day 47

Well, I am almost half way through the 100 day wait period.

I got more information back Monday from the bone marrow aspiration. Apparently the new cells generated from donor cells comprise 92% of the blood cells. That's probably pretty good. But since that sample was taken just 2 1/2 weeks after the new cells began to engraft, it's still preliminary. But still 92% at that point sounds good to me.

The 92% is an average. The white cells were 67% new cells. And the red blood cells were 95% new cells. An average by volume gives 92% overall.

The red count continues to climb steadily although slowly. The white count continues to bounce. I had another Neupogen shot Monday, so the white count was still above minimum levels today. One of these days they will hold above the minimum level for 5 or more days, and then I'll have that behind me. Maybe that will be this Friday.

At this point I am just waiting for the counts to stabilize and climb into the normal range. Also continuing to watch for signs of GvHD, graft versus host disease. That, I guess, is why they keep you around here on average for 100 days post transplant. It just takes a while for all that to take place.

I am feeling good and working out about 5 days a week in the fitness center in the hotel. I am able to get some work done between infusions and blood work and generally running back and forth.

Should be a great football weekend. After reading John's comment, though, I'm not sure Tech should even show up Saturday. LOL That will be a tough game. Georgia should handle Mississippi State easily. After missing my call on the Florida/Auburn game I better stop at that.

Oops - Vandy 24, Dawgs 22. What did I tell ya?

I sure am glad I'm doing this transplant during football season. At least there's something to help me keep my sanity - FOOTBALL.

Medically, things are still the same, just doing one day at a time. Nothing new to report.

Prediction for tonight: Florida all over Auburn. And Tech can't lose (we have the week off).

Day 40

I'm still stuck in my routine. I'm not complaining though. Boring is good.

The red count continues to climb a little at a time. The platelets are steady around 200. The white count still is a yo-yo.

I'm done with my ATC run for the day - more magnesium and phoscarnet IV. I still go to the ATC on Monday, Wednesday, and Friday. The other days I hook up the infusions myself in the hotel room.

Dr. Khouri is out this week, so I'm just seeing the APN, Joy.

The PharmD from Virginia Tech, Amber, came by today to get her dose of ribbing from this Georgia Tech grad. I was pretty nice to her, though. Now if we can handle Clemson on the 21st.

No predictions this week since Tech doesn't play and UGA plays Vanderbilt. Vandy has put up a good fight a couple of times this year, so you mutts better be careful.

Day 35

It's Friday, so I'm finishing up my last trip to the ATC for the week. I got the usual stuff, magnesium sulfate, phoscarnet, and immunoglobulin, plus a Neupogen shot for good measure. So far no fever, no stomach problems, and no skin rashes.

I'm sitting here in a room on the 10th floor in the ATC which has a full window wall with a nice view to the south. The Rotary House is across the street. This was the room that Ann Richards, the former Texas governor who died a couple of weeks ago, used. Not that I'm a big Ann Richards fan, but the room has some notoriety because of her. I hope this room brings me better luck than it did her! LOL

I got the CT scan report back on Wednesday. It was fairly easy to read and said that many of the lymph nodes had decreased in size, many remained the same size, and just one had grown ever so slightly. Given that I didn't engraft until day 12, the new system seems to being doing some good against the CLL already.

I got a copy of the bone marrow aspiration (BMA) report today. Now that is a little more complicated. If you think the monoclonal antibody subject is complicated you wouldn't want to tackle the BMA report. I've got a little homework to do over the weekend to decipher that one. The one thing that I did pick out of the report that I understood was that the percentage of lymphocytes in the bone marrow was in the normal range. Even though it's very early in the process I like good news of any kind.

I'll see Dr. Khouri on Monday, so I plan to be loaded with questions. He is a quiet man with a Lebanese accent, so communciation can be a little difficult, especially when we are both wearing masks. Up to this point we haven't had much of substance to talk about since it's so early in the transplant process. But these two reports will change that. I finally got Dr. Keating, my leukemia doctor, trained to sit still long enough so I could quiz him real good. Now I've got to break in another one. LOL

I'm looking forward to the weekend "off." I might even be able to get the Tech/Maryland game on TV here, since I think we get ESPNU in the hotel.

Go Jackets !! Let's hope the Fridge doesn't surprise us.

BTW, the Tennessee game isn't going to be pretty for you Dawgs out there. It's going to be hard to win when the offense is so anemic. Too many QB's to choose from and Tennessee's QB is set.

My predictions: Tech 35 Terps 17. Vols 24 Dawgs 13

Day 31

Wow! Thanks for all the comments, ya'll. It's nice to know so many people are keeping up with me.

We have met such great people in our trips to M. D. Anderson. People here are all in the same boat, so it's quite easy to meet people. Over a year ago we met Merlin and Janie Cohen from Arizona. Janie had an extremely difficult melanoma on her head and underwent a very extreme treatment with Interleukin 2. She has just received an almost miraculous all clear checkup. Merlin is a former dentist turned sculptor. Check out his website at www.merlincohen.com.

Terry and Linda Irvin are from Pennsylvania. I met Terry in May while he was good naturedly harassing one of the leukemia nurses. He and I have been tracking along about the same, but he got ahead of me by about 3 weeks with his bone marrow transplant. He is a general contractor and golfer, so we have a lot in common. This summer when I was here getting chemo, Terry, who spent most of the summer here, was getting an abdominal lymph node biopsy. This procedure involved a long needle through the back. Because they had to knock him out to do the procedure they had to have someone sign him out and help him out of the hospital. He was here by himself at the time, so Merlin Cohen and I went and got him out of the hospital. We three ended up hanging out together for several days. I see both of them frequently when I'm here, although Merlin and Janie won't be here much, hopefully, in the future. I see Terry several times a week at the ATC.

Now we have met Anna and John from Austin. Anna left a comment on my last entry to the blog. They are an amazing couple and a lot of fun to be around. I first met them making the rounds on the 11th floor of the hospital. John has AML and has received a stem cell transplant with his brother as the donor. They have another member of their family here with them, Dillon, John's seeing eye dog. John is a great inspiration to me.

Then there are the myriad of other people we have met but haven't had the opportunity to know as well. There's the little middle eastern girl who is always here at the Rotary House dressed in pink. We met a couple on the Rotary House shuttle bus last week from Jackson, Mississippi who has family in Atlanta. Doug, the husband, played football at Tech in the late 60's and is an architect in Jackson. The list could go on and on. Plus there are the nurses and doctors who have great stories in their own right. One of the APN's (advanced practice nurse) who came in to check on me the other day in the ATC had on a cap covering her bald head. I gently joked to ask her if she was undergoing chemotherapy or just trying to make the rest of us feel better. She is indeed participating as both patient and nurse.

So the people are truly fascinating. I have said from time to time that I don't know if this is nightmare or an adventure.

Changing subjects, I must have confused everyone with the monoclonal antibody stuff. So let me clarify it a little.

Our bodies produce antibodies to fight off specific bugs. That is why adults usually don't get the strep throat that their kids get. The parent's body has seen strep before and has produced antibodies that will kill strep next time it tries to invade. That is why we get vaccinations, too, to introduce a little bit of a bug to our systems in order to make our immune systems produce antibodies to fight off the real bug when it comes along.

It has been theorized that our bodies could possibly create antibodies to fight off specific cancer cells. That hasn't really materialized, but in the 1970's artificial antibodies were produced inside mice that would attack certain types of cells. Once these antibodies were perfected using both mouse as well as human DNA, they were cloned. And they are cloned from one certain antibody. Hence, mono, for single, and clonal for cloned. This is what a monoclonal antibody is, an antibody cloned from a single type of artificially produced antibody.

How many monoclonal antibodies are there? You can google "monoclonal antibodies" and get a lot of information on them, but there are roughly a dozen of them that have been developed so far.

What kind of cells do these antibodies attack? Researchers have found that cells have various protein molecules on their surface. The proteins are named CDxx, where the xx represents a number. CLL (chronic lymphocytic leukemia, the disease I have) cells have a protein on them called CD20. Also some CLL cells have CD52 on them. AML cells have CD33 on them. There are even more proteins than these.

So the monoclonal antibodies have been "programmed" to go after cells that have specific proteins on their surface. Rituxan is one monoclonal antibody that I have had numerous times that targets cells that have the CD20 protein on them. Fortunately, very few healthy cells have CD20 on them, so Rituxan is very good at seeking out and killing just CLL cells. To use a military analogy, Rituxan is like an immunological sniper.

Campath is another monoclonal antibody I have had that targets cells with the protein CD52 on them. CLL cells have that protein on them also, but so do some healthy cells. So Campath is not as targeted as Rituxan. It kills CLL cells, but also some good cells.

Lynda's uncle, Alfred, has taken another monoclonal antibody, Mylotarg. Mylotarg targets cells with the CD33 protein on them. Apparently CD33 is on the surface of AML (acute myelogenous leukemia) cells. Last report is that they didn't find any trace of the disease in him.

So, now are you thoroughly confused?

Today was something of a milestone day in that I had a CT scan and a bone marrow biopsy to determine how well the transplant is working. It will be a few days before the results are available. It will be about 2 weeks before we will know what percentage of the bone marrow is comprised of the new system versus my old system. The new stem cells have to create new blood and a new immune system to attack the disease and wipe out the remainder of my old system. So that is the battle going on inside me right now. No wonder I'm a little tired.

I only have to go to the ATC on Monday, Wednesday, and Friday now. I still get a daily infusion, but on the "off" days I hook up the infusion myself in the hotel room using a little portable pump in a bag. So tomorrow, Tuesday, is an "off" day.

Today was a long 11 hour day starting with bloodwork at 6:15, followed by the CT scan (with barium for breakfast), the usual infusion, and a long needle in the hip (bone marrow aspiration and biopsy), and then topped off by a Neupogen shot. I wheeled my IV tree down to the 7th floor to get the bone marrow biopsy while hooked up to the IV. I'm a little sore tonight from the Neupogen, but especially from the bone marrow biopsy, which now feels like I've been kicked in the rear by a horse. Pretty typical, but it will be a lot better tomorrow.