So - What's the Latest on the Study?

First, before I go into the question that I get nearly every day,  I want to extend a huge thank you to those of you who are calling, writing or tweeting the Governor’s office in support of AB 1000 (Perea).  Keep doing it!  I'm speaking at a press conference on Thursday, so perhaps you'll see me once again in the news.  Hopefully, this time we'll have a better outcome!  If you don’t know what the heck AB 1000 is, please see the blog post from last Friday. 

Also, in that post, I promised to give you the latest on my cancer journey.  Unfortunately, I still don’t have much to report.  I saw Dr. Fisher a couple of weeks ago with the hope that he’d have some news for me.   His frustration was evident as he informed me that they still had not sent my tumor sample to Genentech for testing.   Genentech came back to Stanford and told them two things:  1) they wanted to send an inspector to visit Stanford to ensure that they had the facilities to partake in the study [which I find ludicrous – it is Stanford after all] before they’ll even sign a contract or test the tumors and 2) instead of allowing 13 people from Stanford to participate in the study, they are now only going to take 2 Stanford patients.  They will only have 10 people in the study and they want to spread out the other slots to other cancer institutions.

Fortunately, George is committed to getting me in if I am eligible.  He has decided to submit my tumors along with two other patients’ tumors with the hope that two of us will be eligible.  I then asked, “how about if all 3 of us are eligible and I’m not selected?”  His response was that he would try to horse trade (yes, he used those words) with another institution so that I could get in.  Crazy.

If my tumors are not eligible, he does have a couple of other studies that he’s considering.  One of the studies is a combo immunotherapy and radiation.  However, he doesn’t want me to be in the first couple of groups of patients who get this treatment, since they will be giving either no radiation or low levels for the first couple of groups.  It won’t be until the 3^rd group that they’ll give the full treatment of immunotherapy and radiation.  He said that although he believes that there will be positive responses from the first two groups, it’s the third group where the miracles will occur and fortunately, he wants me to be in that miracle group.

Although it has been frustrating to wait and wait and wait, I do feel like I’m in the best hands possible.  I know that my oncologist is my champion.  He will do everything in his power to get me the best care possible.  I feel so blessed to have someone of his caliber and stature on my side.  He also loves the girls (and Pat) which is a bonus.  I figure that will give him an added incentive to keep me alive.

So – I’m continuing to take my chemo pills and Avastin IV.  We did end up having to change my protocol.  Apparently, my body has had too much poison running through it and was dangerously saturated.  I told both Dr. Fisher and Dr. Smith that I was tough and could handle the dosage. But, Dr. Fisher said that it was important that we do as little long term damage as possible to my system, and giving me too much chemo would result in significant long term problems.  Therefore, instead of 2 weeks of chemo followed by one week off, we have changed to one week on, one week off.  I just hope it will continue to keep the tumors from proliferating.

Today, while getting my bi-weekly Avastin drip, I received a text from George's right hand, Margreet, informing me that Stanford and Genentech signed the contract over the weekend!  Stanford will be sending my tumors to Genentech right away.  I offered to drive them from Stanford to Genentech if necessary, but I don't think they're going to take me up on my offer.  

So, here I am, in a holding pattern for the next couple of weeks – hoping that I’ll get to enter either the PDL-1 study or another exciting study before things get worse - crossing my fingers and praying.   Thank you for all of your wonderful prayers and healing thoughts as well.  It is a miracle that I'm still alive and thriving and I credit not only my amazing western and eastern doctors, but all of you as well for keeping me strong.  I am blessed to have you in my life.