Friday, September 19, 2008

FCR+L Trial

A lot has happened since my last post. I've been trying to get into the FCR+L trial since May, and I finally am supposed to start on Sunday, September 22, 2008. (There is a wrinkle; I've just developed a cough, so I need to have that checked out before I start the trial).

I was notified on Thursday that I have been randomized to be in the arm of the trial that includes the lumiliximab. Lumiliximab is a CD-23 antibody. It works in a fashion like rituximab, but the CD-23 marker isn't as good of a target.

The difference is that the CD-20 marker is a transmembrane protein; it pokes part of itself outside of the lymphocyte, and keeps the 'tail end' inside of the cell, in the cytoplasm I would assume. The way these markers work is they are the 'eyes and ears' of the cell, sensory organs if you will. The marker detects a signal outside of the cell in the microenvironment, and then signals inside of the cell.

Being a transmembrane molecule, the CD-2o marker is a robust one, hanging on the the cell (in large numbers, in the thousands), resisting falling off and becoming useless. The CD-23 marker, unlike the CD-20, is much more easily dislodged from the cell, and a detectable fraction of the markers are found in the microenvironment. This makes the CD-23 marker less effective at killing CLL cells.

The hope the company who is pushing this MoAB through clinical trials is that it will enhance standard therapies. Small studies have suggested that this is true; the complete remission rate with FCR+L is higher than plain old FCR.

I am scheduled to start the study this coming week at the University of California, Davis Medical Center. Although I've gotten all of my treatment so far from UC San Diego, I opted for UCD this time because the trial protocol they offered me allowed either MRIs or CT scans. Anyone who knows me knows that I dislike CT scans because of the amount of radiation, which raises the risk of secondary malignancies, a complication CLL patients are already at higher risk for.

The secondary reason is that I live in Sacramento, and this will mean not having to fly down to San Diego for follow-up visits and all six cycles, assuming I would get that far.

As far as my general health goes, I am fading, but not at a fast clip. My biggest problem is my anemia. I am in the 8.8 range at last test, and this is not normal. Even the government will pay for Epogen if the hemo rate is below 10.0, which I am.

My other numbers are terrible, but sort of holding steady. WBC at the 200,000 range, platelets (always a problem for me) at about 75, and the red blood counts, as I've mentioned, a continuing problem.

My latest test should be on my fax machine when I get home tonight, so I should know if I need a transfusion in the next day or two.

My biggest problem right now is this cough I can't get rid of. Dr. Hamblin believes I should wait before I start the trial, and I am inclined to agree with him.

I think I got this latest infection (I've been remarkably infection-free even with terrible numbers, until this year, and I've had three infections since January) from using a neti pot. This is a device that allows you to pour salt water from one nostril into the other, draining stuff and supposedly keeping you clean. However, I made the mistake of just using tap water, which is not sterile. I usually boil the water, but just forgot.

This cough has now settled into my chest. Well will see what happens.


Debbie Light said...

Hi Barry,

I hope and pray this treatment helps you.Your cll friends are praying for you including me!
Take care and don't give up hope.I feel certain you will get a good result.

God Bless,

Brian Koffman said...

Thanks for the mention of your excellent blog on the ACOR CLL listserve.I will be following it closely.
I agree that MRIs are safer, but CT are better for seeing the nodes and MRI is useless in the thorax.
The point is rendered moot, as all the guidelines suggest NOT using imaging to stage disease.
That said, a CT/PET fusion scan is one good way to look for Richter's, and for some of us (especially 11q del) most of our disease is in the nodes, so it is important to follow their size.
Please let me know if I can be of any help, any way.
Be well

Anonymous said...


I am a faithful Netti pot user and it has eliminated many sinus infections for me. However, my physician instructs me NEVER to use tap water with my compromised immune system. You very well might have caught the infection from the tap water. I use distilled or sterile water (can you believe you have to have a prescription to purchase sterile water and it is over $10 per liter)?

goodydogs said...

Barry - I have started a new blog. Please check it out when you get a chance.

Bonnie Goodhart

Brian Koffman said...

You asked if I had any second thoughts about my very early transplant decision in view of my ongoing rejection of the graft.
I could just rely on my motto to never to look back, but truth be told, I think it was the right decision, but in hindsight I was not adequately immunosuppressed. In other words, I would do it again, but with a bigger hammer. That BTW, is probably my next step.
Be well