Thursday, September 20, 2012

Failing CAL-101/GS-1101?

I saw Dr. Coutre at Stanford Clinic yesterday, and was dismayed to find out my lymphocyte count has gone up to 20,000.  This is the highest it's been since I started on CAL-101, and may very well be a sign that I am failing the drug.  I think everyone knew this isn't a cure, but I also think that we all hoped I would get a number of years of remission from the drug.  A year and a half doesn't seem that long, in retrospect.

We will follow up with a WBC next month as part of my IVIg.  If there is continued increase in the lymphocyte count, then it is likely I will be pulled from the trial.  That would be a big disappointment, of course, since there is not much out there I would qualify for.  The Bruton's tyrosine kinase inhibitor unfortunately is completely filled, so there would be no room for me.  The other option would be conventional chemotherapy which does not work anymore on me.

So I may be going from a stable situation in which I feel well and am able to live a pretty much normal life to one where CLL is once again front and center.  I know I have done better than many (but not all) and I shouldn't complain, but this indeed is a real blow.

I'll try to stay on the positive side, at least for another month.

I suppose I will go back on the prayer list from my church.  Prayers do help, in my opinion.  I think they were a God-send when I was so sick in the hospital.

Monday, September 3, 2012

Steady as she goes

Nothing much to report.  I go back to see Dr. Kipps in San Diego near the end of the year; I see Dr. Coutre next month.  I will have scans the end of the year, as well. 

My abdominal nodes remain one of the biggest problems I have.  After going down nicely when I started on CAL-101 (GS-1101), they seem to have increased in size since my hospital ordeal at the beginning of the year.  I admit that some of the girth I suffer from is from 'good eats' but most of it is enlarged nodes.

The rest of my nodes are pretty much non-existent.  No matter how hard Dr. Kipps pushes, he can't seem to find much of anything.  I do have some nodes that are palpable, but not many and not very large.  So I am on a steady course as we speak.

Now if I can just get through the political rhetoric for the next few months, I'll be happy.