It will always be CAL-101 to US, but I learned Thursday that our little miracle pill has a name now. CAL-101/GS-1101 is now officially Idelalisib. (How do they come up with these names?)

I told Dr. Flinn that I thought Ibrutinib was a weird name. But Idelalisib is even weirder.

With the success of these Kinase Inhibitors, a third is now being developed and studied. This is such an exciting time in the treatment of CLL and I am very thankful that John and Marian have had the opportunity to participate in this important research. We had another uneventful checkup this week. Both of them continue to be in remission with no changes in their blood work. And they will not have to have more scans until August.

April of 2013 will mark six years since John's initial blood test showing a high white count. He was officially diagnosed with chronic lymphocytic leukemia that June. His lymph nodes were his biggest problem from the outset. And even FCR (chemo) did not give him a remission. But this little pill started shrinking his nodes within days of the first dose (May of 2010), and he has been doing well ever since.

I am one very thankful wife. And whenever I hear people complain about the drug companies, my first thought is always, I am thankful for their research.


Anonymous said…
Great to hear that John & Marian bith continue to do so well.Do you know, was John's dose left where it was because of any problem with a highr dose, or was he always earmarked for that dose for the entire 12 months of his trial?

Also, was Marians\'s dose altered when it was resumed after her episode of pneumonia? How long was she off the drug at that time?

Merry X-Mas and Happy New Year
Shari said…
John started the trial at 50 mg. twice a day. He responded beautifully and never needed to increase his dosage. He has never taken more than 50 mg. morning and night. But he was the only patient in the trial who responded to that low dose. So now they don't even make a 50 mg. dose anymore. But rather than increase his, he now takes 100 mg. in the morning and nothing at night. He continues to be stable and in remission. Marian started her trial at 150 mg. (the dosage is set by the protocol of the trial and based on other trials). After her peumonia, Dr. Flinn decreased her dosage to 100 mg. twice a day just in case the CAL-101 played any role in her pneumonia. It isn't clear that it did, but it could have. She has had great results (complete remission) at that dose. She was only off CAL-101 for 2-3 weeks and then resumed with no other problems since.
Merry Christmas and Happy New Year to you too!
Cameron VSJ said…

I have a quick question about your blog, would you mind emailing me when you get a chance?


Shari said…
I would be happy to email you, but I don't have your email address. You can email me at

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