Wednesday, August 30, 2006

Who Was M. D. Anderson?

This would be a trivia question on the east coast, but it's not in Texas.

Here is a link to Mr. Anderson's bio on the MDACC website.


Click Here to see his Bio

Press Your Refresh Button

If you find that you are not seeing the most recent posts on your computer, refresh your screen. If you are using Windows, you can do this by hitting the F5 key or by clicking on the green double arrows at the top left of your screen in Internet Explorer.

But, of course, if you don't see the latest posts you won't see this one. Your computer should refresh by itself every time you shut it down and turn it back on. But if you don't turn your computer off you will have to refresh manually as mentioned above.

Day Minus 2 - A Little Green Around the Gills

Day Zero is the day I will get the stem cells, which so far looks like it will be Friday, so counting backwards makes this day minus 2.

The chemo caught up with me a little bit today. I asked for some Zofran at 5:30 this morning. Zofran is the good stuff that makes nausea go away. They wake me up every morning at 4:00 to get vital signs and then they wake me up again at 5:00 for blood. Then they wake me up at 5:30 to pick up the wet towels and leave clean linen. So by that point this morning I was awake enough to know that I didn't feel so hot.

So after the Zofran I slept until 7:30 when they woke me up again. So I got up, got dressed, ordered breakfast and made a couple of laps around the floor. Later on I made a few more laps. The nausea has degraded to a low grade blah. The doctor making the rounds about noon didn't understand the term "blah" but the 3 or 4 nurses and techs, all female, making the rounds with him understood the term very well. Must be moms.

This is my day off, so I'm lying low. But here at mid afternoon I'm getting a little case of cabin fever, so it's time for more laps.

Tuesday, August 29, 2006

3rd Day of Chemo Is Over

I should say the 3rd and last day of the roughest chemo is over. This regimen consisted of an IV cocktail of Fludarabine, Campath, and Cytoxan, all of which I have had before but in smaller doses. This is part of the ablative chemotherapy they use pre-transplant. To ablate is to kill off, so they use this combo to partially kill off my bone marrow in order to make it easier for the new stem cells to engraft or to take root.

This stuff was suppose to make me pretty nauseous. But so far so good. I've actually been walking 3 miles a day. It takes 5 trips around the whole floor to go a mile. So I have been making 15 trips around the floor. Actually, today I make 17 1/2 trips for 3 1/2 miles. My nurses hammer home the point that the people that do the best are the ones who get excercise. So I'm working hard at it. Plus it gets me out of this room!

I'm on the 11th floor of the building called the Alkek Hospital, which was named after it's benefactors whose last name was, you guessed it, Alkek. There are many buildings, clinics, gardens, etc. that make up M. D. Aderson which are named for their respective benefactors. I am confined to this floor because it is a clean room floor. When I leave my room I have to wear a face mask and latex gloves, and anyone who comes into my room has to wear a mask and gloves.

My blood counts are dropping after the chemo and I expect my white counts to be zero in the next few days. I'm hoping the red counts stay up and I can avoid getting transfusions of platelets and blood, but that is not likely. Apparently the chemo is quite thorough.

I have tomorrow, Wednesday, "off." Then I get a big bag of Rituxan on Thursday and hopefully stem cells on Friday. The stem cells depend on if they can get enough from the donor in one day. They will start the harvest from the donor on Thursday, so keep him in your prayers.

Sunday, August 27, 2006

CVC, Hospital Check In, & First Day of Chemo

All went well. The CVC insertion went well Friday morning, especially since they use an ultrasound machine to locate the vein rather than just "taking a stab at it" - literally.

I checked in the hospital Saturday evening and bedded down for a night of not much sleep. The nurses check your vital signs every 4 hours. So between that and trying to get comfortable on a narrow hospital bed, sleep was not easy to come by.

The first day of pre-tansplant chemo on Sunday was uneventful. Plenty of Benadryl in the IV kept me a little groggy most of the day. But that's okay. We'll do the same thing Monday and Tuesday. On Wednesday I have the day "off" - just confined to the 11th floor.

They encourage you to get some excercise which consists of rolling your IV tree around the four pods of 13 rooms on the 11th floor. I made 10 trips around the whole floor today. I was told that 5 trips around the whole floor is the equivalent of a mile of walking. I sort of doubt it, so I will count my steps tomorrow and calculate the distance assuming my stride is 3 feet. With several people on this "jogging path" it got a little crowded a few times.

On Thursday I will get a big bag of Rituxan. And then on Friday I am scheduled to get the stem cells.

For about a week after receiving the stem cells, apparently, I won't be too energetic. The chemo will have wiped out much of my immune system, so all my blood counts will be very low if not non-existent. The new cells will have to find a home in my bone marrow, start fighting the disease, and start to finish off what is left of my own immune system. They'll be busy little boogers.

When the transplanted cells begin to engraft and the blood counts come up to a certain level, they discharge you from the hospital out to where you are staying locally for the next 100 days. It will take anywhere from 10 days to several weeks post transplant for the blood counts to come up. I'm hoping for the 10 day duration.

Thursday, August 24, 2006

The Game Is On

Good news. Dr. Khouri said that the questions from two weeks ago are cleared up and I am ready for the transplant.

I got the first round of pre-transplant chemo today after seeing Dr. Khouri. I only got Rituxan today, which is a mono-clonal antibody that goes after the diseased B cells. Rituxan is not too bad on you, so I'm doing fine tonight. It was a long day, though.

Tomorrow I get the CVC put in my chest. CVC stands for central venous catheter. It is a line that goes in one of the main veins to your heart. It is a triple line that allows them to put multiple fluids directly into your heart for distribution to the body. Sounds a little gross, but I have had eight PICC lines over the last couple of years. And a PICC line is similar to the CVC but it is inserted under the upper arm instead of the chest. They use an ultrasound machine to help locate the target vein so they don't miss. It's all tolerable. You just have to keep the dressing changed and the lines flushed out with a fluid called Heparin, an anti-coagulant. The CVC will stay in until I get to come home.

I go into the hospital on Saturday evening. And next week I will get chemo for four days. The stem cells are scheduled for Friday, September 1. So I should be good to go for the ballgame Saturday. No golf for a while, though.

Sunday, August 20, 2006

What is a bone marrow stem cell transplant? And how can I become a donor?

What exactly is a bone marrow stem cell transplant? That's a pretty good question.

Well, a bone marrow transplant is similar to an organ transplant. We are taking out one system and replacing it with another.

Stem cells are "parent" cells. From them all other cells grow. So bone marrow stem cells grow bone marrow. And bone marrow in turn produces all the blood cells like white and red blood cells. The bone marrow stem cells are NOT embryonic stem cells which have been the focus of so much controversy. I am not killing any fetuses to obtain my stem cells. In my case they will come from an anonymous 39 year old male donor.

Bone marrow transplants now use bone marrow stem cells from the donor to GROW new marrow in the patient instead of completely replacing the marrow. The original bone marrow transplants became less popular when it was noticed that about half the patients died.

In the original, or first generation, bone marrow transplant, the patient's bone marrow would be killed completely off before receiving the donor's marrow. In a bone marrow stem cell transplant, the patient's marrow is not completely killed off, but just "half way" killed off with a chemical cocktail. Then instead of getting complete bone marrow, the patient gets the stem cells from the donor. This is called a "mini-transplant." The new stem cells grow new marrow. This is probably the third generation of bone marrow transplant technology. The mortality rate is far lower than a whole marrow transplant.

As the new stem cells grow new marrow it begins to attack the disease. And over a few months, the new marrow replaces the patient's old bone marrow, too. Essentially the patient is borrowing someone else's bone marrow and, hence, immune system for the rest of their lives.

As with all transplants, there are some rejection issues. In the bone marrow transplant, it's not so much a case of the body rejecting the new marrow as it is the new marrow rejecting the body. Remember the bone marrow generates the blood and immune system. So the new marrow sees the new body it is in as foreign matter and wants to attack it. So the patient receives anti-rejection medication for the first year or so.

"How does one find a donor?", you might ask. The National Marrow Donor Program runs a large database of possible donors. I say a large database, but it isn't large relative to the population of our country. Currently there are about 5 million people registered as possible donors. That's not really very many. I had 37 preliminary matches out of this 5 million. Upon further testing I ended up with two perfect matches. Wow, two matches out of 5 million. You can tell what the odds must be. So, the more donors we get in the database, the more people can benefit from this life saving transplant.

There are a number of parameters that they examine to determine how well a donor's marrow matches a particular patient. Oddly, blood type is not one of the major factors in a match. A sibling has a 25% chance of being a good match. But if that doesn't work out, one must rely on the bone marrow registry.

To join the bone marrow registry is painless. It doesn't even require a blood sample, just a mouth swab.

If you turn out to be a preliminary match for someone one day, they will want to draw a vial of your blood to do a complete match. If you are chosen to donate your stem cells, it will require just a few hours of your time. Your local donation center will put an IV in each arm. They will take blood out of one arm, run it through a machine to harvest some stem cells, and then put the rest of your blood back into your other arm. This is a pretty simple procedure and will save someone's life. The stem cells are then taken by medical courier to wherever the patient is.

To become a donor or to organize a bone marrow registry drive, contact the National Marrow Donor Program at 800-526-7809 or at http://www.marrow.org.

You can help organize a drive at your church, business, or other organization. Often these registration drives are held in conjunction with a Red Cross blood drive in order to maximize the number of people participating. It's critical that we get many more people in the marrow registry.

Wednesday, August 16, 2006

What is CLL?

I have been asked to describe what CLL is. CLL stands for chronic lymphocytic leukemia.

There are two major categories of leukemia -- lymphocytic and myelogenous. Lymphotcytic leukemias affect the white blood cells, while myelogenous leukemias affect the red blood cells.

Within each of these two categories are two sub-categories, chronic and acute. So you have CLL, ALL, CML, and AML. There are a number of other less common forms of leukemia that don't seem to fall into these two major categories, but I won't go there.

Chronic forms are usually somewhat slow growing but are difficult to get into remission. Acute forms of leukemia advance rapidly and require immediate treatment.

What is white blood, what does it do, and is it really white? The white blood cells fight off infections and viruses. There are B-cells, T-cells, and NK-cells. The B-cells fight off infections. The T-cells fight off viruses. And the NK-cells attack whatever is left over. NK, by the way, stands for natural killer. No kidding.

Red blood cells carry oxygen and nutrients through the body. Hemoglobin is a red blood cell which carries oxygen to your muscles. Hematocrit carries iron and, I guess, other nutrients through your body. If your doctor says that you're anemic, he is saying that your red blood cells, hematocrit and hemoglobin, are at low levels.

CLL is a disease that affects the B-type white blood cells. It renders these cells incompetent. In other words it makes them unable to fight off infections. But not only are these B-cells rendered useless, they don't die off when they are suppose to. So your body becomes saturated over time with the diseased B-cells. Left untreated, CLL will cause you to get more infections. Eventually you succumb to pneumonia, an infection of your lungs.

So there is my leukemia primer for you. Unfortunately, I could fill up quite a number of pages with information that I've learned, but I'll spare you the details. At least for now.

Sunday, August 13, 2006

Trying To Get To Transplant

Hello everybody. Thanks for visiting the blog and checking up on me.

We had a delay in the bone marrow stem cell transplant. It was originally suppose to occur on August 17. But the doctor noticed a couple of spots in my lungs when he examined the CAT scan and was concerned it might be a small infection. As he said, a small problem now becomes a major problem during transplant. So he had a bronchoscopy performed to get a sample of the stuff in my lungs to see if it is indeed an infection. The bronchoscopy is a procedure where they run a tube down your throat and into your lungs. They then squirt a little saline solution into the lung and suck it back out and then put the sample in a petri dish to see if it will grow anything. And, yes, thankfully, they do knock you out to do the bronchoscopy.

They want to give the sample a couple of weeks to grow something. Those two weeks are up on August 21. They have me scheduled to begin the process again on August 22 with a transplant date of September 2. Unfortunately September 2 is when Tech plays Notre Dame. But it is a night game and if I can get them to give me the stem cells early in the day, then I can still catch the game. We have to keep our priorities in order you know. I hope they don't mind a little yelling and screaming in the hospital. My prediction is 35 to 7 ND, unfortunately.

I am back at home this week of August 14 until they give me the green light on the 21st. If they don't proceed then that will mean several weeks of antibiotics to clear up whatever they find in the lungs. That will push things way back easily into 2007. There is a minimum stay in Houston of 100 days post transplant, so any further delay and I am definitely wishing for a white Christmas in Houston.

Many thanks to Pete English for setting up this blog for me. He's a long time friend and fellow TEC group member. For a UGA grad he ain't half bad. LOL

I'll keep you posted on the progress.