09-09-09: It will be easy to remember the date of John's first cycle of chemo!

Yesterday went fine; completely uneventful (I love uneventful). John received only 100 mg. of Rituxan (a partial dose the first day in order to minimize or eliminate a reaction). Rituxan is a monoclonal antibody that targets CD 20 in the blood. Lumiliximab is also a monoclonal antibody, but it targets CD 23. Fludarabine and Cyclophosphamide are the actual chemotherapy drugs in this "cocktail" for CLL. For those unfamiliar with CLL, it has been discovered that these drugs have increased effectiveness (above any alone) when given in this combination. John will be getting his initial dose of Lumiliximab this morning (which takes about four hours through the IV). They introduce that slowly, just like the Rituxan, to minimize reactions. When that is fully infused, he will get the F and C. His platelets this morning were 183. Tomorrow they are expected to be 80. That's what chemo does. It kills. Along with the malignant lymphocytes, healthy cells will also die. This includes T-cells, which fight infection. (It can take two years or more for your T-cells to recover. In some patients, they never do.)

The PA who keeps close tabs on John for the clinical trial is Mahayla. (I hope I'm spelling her name correctly.) She checks on him when he arrives and all throughout his treatment. She is so sweet. John's eyes got big when she told him his platelets were going to drop that much from just the first dose, but she assured him that there is no cause for concern unless they drop below 20. This is another one of those reasons why you don't want to wait until you're in trouble with your blood to start treatment. You want a cushion because all your good counts are going to initially take a big dive. It's also why you have to have a recovery period between doses.

Anyway, although John technically began treatment yesterday, today (09-09-09) will be his first dose of the chemo drugs. Easy to remember.

They give the drugs sequentially, so that gives you an idea of why he has to be here so long. Tomorrow he will get the remainder of the full dose of Rituxan. Friday he will get the remainder of the full dose of Lumiliximab. And he gets a dose of the F and C today, tomorrow and Friday.

John went home yesterday and took it easy. I think we were home around 4:00 or a little after. He said he felt fine except for being very tired. He didn't sleep real well last night, but he's getting Benadryl again so he's catching up on his rest now. It's not nearly as crowded here today, so I get to sit in one of the patient recliners instead of a folding chair. The entire staff here at SCRI are wonderful. We have great nurses who appreciate John's sense of humor. To hear all the cutting up, you wouldn't have a clue that we are here for such serious therapy.

In addition to the IV meds, John is now taking Alopurinol (to protect his kidney), Acyclovir and Bactrim (a prophylactic measure for infection) daily. This morning, as he was taking his medications, he said, "Well, I'm officially old now. Look at all these bottles."

Since many of you have let me know that you are interested in the details, I will continue posting blog updates so you can check on John at your convenience. I will say one thing for my role as wife/caregiver; I'm pretty sure I have the sweetest, funniest, most resilient husband/patient in the world.

Thank you again for all your prayers. We definitely feel them. And I can tell that John has no regrets about letting me share this battle with ALL our friends. The outpouring of love, support and prayers from so many have been overwhelming. We feel incredibly blessed to have so many true and caring friends. John is not as "out there" and expressive as I am, but believe me, he feels your love and concern as much as I do. He really appreciates your prayers. And your friendship means every bit as much to him as it does to me.


Thanks for the updates. Don and I are praying for both of you!