Bethesda Bound, and An Engagement!

Yep, I'm headed to the National Institutes of Health in Bethesda, Maryland. I will be screened there on June 13 and 14 to determine eligibility for a clinical trial using Ibrutinib, aka PCI-32765. Brianna is going with me, and she has been scouring the internet to find the best prices on airfare and accomodations. All kind of fun, and also kind of scary. But I am very, very grateful for this opportunity. In even bigger news, our Shane announced his engagement this week to the lovely Kaylee R. They're planning to be married in the Twin Falls temple on Aug. 17th, and then continue their studies at BYU. We are very happy and grateful for their carefully considered decisions, and feel many good things are in store for them.

The marriage didn’t take place after all, and difficult though it has been, we are all grateful that it did not.  Shane is doing well.  He is strong and good. We hope all will go well with Kaylee, also.

Applying to Enter a Clinical Trial

So the local doc and I have been discussing several treatment options since March, and I finally settled on Revlimid, also called Lenolidomide. But what should appear in my mailbox but a letter from my insurance company denying benefits because it's still an investigational treatment. I headed over to the CLL forum with a view toward appealing this decision, asking for help in finding peer-reviewed articles that showed Revlimid's efficacy with my particular kind of CLL, the one with the hard-to-treat 17p deletion. Instead, several folks encouraged me to contact the NIH in Bethesda, Maryland, where a clinical trial is underway with a BTK inhibitor called PCI-32765, or Ibrutinib. I've read a little about these BTK inhibitors (that's an enzyme of some sort), and I have often wished I could participate in one of the trials, but knew that I couldn't afford to fly to distant locations and rent a place to live for the duration of a trial. Also, during most trials the drugs are free, but not the laboratory procedures, etc, and again, my insurance would not cover those expenses anyway. In this particular trial though, almost every expense is covered by the NIH once a patient has been enrolled in the trial, even airfare. Patients also receive $60 a day, which would cover a portion of the cost of a hotel. Now I'd need to bring someone along with me, so I'd have to pay for their airfare, but that's doable. I emailed the doctor who's the principal investigator for this trial, and he emailed and phoned me back within 30 minutes of my email. He asked for various medical records, and about my CLL history. He explained that the trial is divided into two cohorts, one for patients 65 years old and above, and the other one for patients with the 17p deletion. He said that each of the two cohorts is further divided into two parts. the first section of 16 patients is full, but because I need treatment, I may take precedence over someone who isn't quite to that point. He said he would be willing to go before a regulatory board and ask if he could include me now instead of waiting for the second part of the trial, when the next 16 participants are enrolled. But there has been an overwhelming response to the trial, so all this is pretty iffy for me. I was a little concerned that my local doc wouldn't think much of the trial, but to my relief, when I saw him today he was very supportive, and ordered a few additional tests that I need to send to he NIH. Whether or not this all comes to pass, something good has already occurred. My trust in the Lord's guidance has reached a deeper level than ever before. He is the potter, I am the clay, and I am happy and safe in His hands, no matter what does or does not happen. And that feels really, really good.