And Off We Go!

I’m thrilled to let you know that they found enough tumor growth in my scans to move forward with the study.  How bizarre is it that I’m happy having tumor growth.  I don’t know how much or where the tumor(s) are, since we have been texting back and forth, but I’m sure that I’ll find out on Thursday.

Why Thursday?  Because THAT IS THE DAY THAT I START THE STUDY!!!  Yes - it's finally happening.  After almost 5 months, multiple tests and a lot of back and forth between Stanford and Genentech, we're on our way.

So - in just a a day or so - I'll be meeting the team at 10 am for lab work and then will head over to meet with the amazing Dr. Kohrt to start the drip.  Thursday's appointment will last about 4 hours, but they expect that going forward, they'll be able to shorten the infusion time.

I am so ready to begin this new journey.  I truly believe that I am pioneer in this new world of immunotherapy.  My prayer is that this study will result in thousands of lives being prolonged or even saved (including mine).

Let the adventure begin!

Guinea Pigs

On Saturday night, our family was fortunate to receive two fabulous guinea pigs from our dear friends who were looking for a good home for their adorable pets.  When they had put out a call to friends to see if anyone would be interested in adopting them, I jumped at the chance.  We had been talking about getting an animal partly because I felt that it would good for the girls to have a pet to help them deal with their feelings around my health.   Ellie wanted a lizard and she had been pushing me hard, so I am incredibly grateful that this opportunity came along right in the nick of time.

Since we picked up Sonic and Zorro last night, it has been remarkable to see how much the girls have fallen in love with them.  Ellie has found a whole new level of calm and both of the girls can’t stop petting their new buddies (those poor little guys – it’s probably just a tad overwhelming).  It has been so therapeutic for the girls.  I couldn’t be happier that these loving animals came into our lives.

Many of you have asked what’s going to be involved with the study.   I met with Dr. Holbrook Kohrt and his team at Stanford on Thursday to talk about the study and to do some tests.    After I jumped up and down hugging each member of the team (except Holbrook – he really isn’t a hugging sort of guy), they laid out the plan.

The protocol will involve going to Stanford every 3 weeks for blood work, an EKG and then an infusion of PDL-1 followed by another EKG.  They do not expect that I’ll have any side effects (which is amazing).  I’ve gone off of chemo since I have to clear it out of my body before we begin the study.  It is a phenomenal feeling not to be poisoning my body.

I will begin the study on October 11.  At this point, the only thing that could keep me from being able to participate would be if my next CT scan, set for October 4, does not show any tumors.  As you all know, I have been on chemo since the most recent onslaught of cancer was discovered at the beginning of the summer.  So – there is a slight possibility that the cancer may not show up (although we are certain that it is lurking).  It’s a surreal experience to hope that my next CT scan shows a tumor.   My new team told me that one tumor would be enough….so I’m asking you all get back to praying – but only for one tumor!

When I was at the Stanford Clinical Trial Building last week, I overheard a man introducing himself to a group and telling them that his wife was one of the “guinea pigs” being treated there.  It occurred to me that I am about to become one of the Stanford “guinea pigs.”    How ironic that we are now heading into an era where we have 3 guinea pigs in the family!  Talk about strange timing…

As Holbrook was leaving our meeting on Thursday, on his way out the door, he turned around and said “Eve, we are so glad to have you as part of the study – not just because you’re PDL-1 positive, but because you are so positive overall.  That bodes well for how you will do in the study.”  I’ll take that statement over a hug any day….

I can’t wait to begin.  

Finally - News from Genentech!

It’s Yom Kippur – so I really shouldn’t even be on my computer, but I didn’t want to wait to tell all of you my amazing news from tonight.  At 6 pm, I received a call from Stanford to tell me that Genentech has tested my tumors and they are PDL-1 positive.  What this means is that they have cleared me for participation in the PDL-1 study.  With about a 30% chance that my tumors would be eligible, I am still in shock that I got in.  It was so sweet – my new friend from Stanford, Lori, didn’t want to e-mail me with the news, but wanted to call so that she could hear me scream.  I gave her what she was hoping to hear.  I feel like I won the lottery.

The next step is to meet with Stanford on Thursday morning for Dr. Kohrt to do some final testing and analysis.  I’m not worried about these tests – they just want to make sure that my blood work is normal and that I haven’t had any other maladies that would complicate the study.  After going through the list on the phone – I think I’m good.  Throughout my life, I’ve been very healthy – except for the cancer.

The only thing that I’m marginally worried about is the CT scan.  They will be ordering a CT to have a baseline of my tumors.  At this point, the only thing that could keep me from participating in the study is if my tumors have disappeared.  All they need is one to show up – so funny enough, I’m hoping that my most recent chemo protocol didn’t destroy all the tumors.  It’s strange to want to find a tumor during a CT scan…..

If all goes as planned, I will be starting the study within the next 2 weeks (we have to wait for the chemo to be completely gone from my system). 

I feel so very very fortunate to be one of only 10 patients nationwide to be able to participate in the study.  I feel like I’m going to be a real pioneer in cancer research.  I pray that my experience will help thousands of others in the future.

When I got the news and started screaming for joy, Ellie and Pat left practicing her spelling words to come and see what was going on.  After finding out why I was screaming, they returned to their list of words to continue their work.  And, what was the next word on her spelling list?   The word “hope.”

Tomorrow I will return to Yom Kippur services.  On this day, the Book of Life will be sealed for the upcoming year.  I feel like getting the news on the eve of Yom Kippur is a little sign that this year is going to be one of healing.  For the first time in quite some time, I can begin to truly envision the long life ahead of me.

Monday is the Day!

On Monday, I’ll get the news about whether my tumor is eligible for the PDL-1 trial.  I am so very nervous. 

If I am eligible, I’ll start the trial very soon.  If not, I’ll be trying to figure out new options right away.

If you were waiting for the right time to send your prayers or positive thoughts my way, now is the time!  Fingers and toes crossed that I get good news on Monday!

As we start the Jewish New Year 5773, I hope that this year will be a healthy and happy year for all of us.  

In Sickness and In Health

On Thursday, Pat and I celebrated our 14^th year of marriage.  It has been one incredible roller coaster ride.  Our highs are very high and our lows are quite low.  But through it all, Pat remains a steady source of calm and comfort. 

I really need that now.  I continue to wait to figure out whether I made it into the PDL-1 study with Genentech.  My natural inclination is to push at every angle to make it happen.  I did get some good news, though.  Stanford and Genentech finally signed the contract to move forward with the study about a week ago.  Once I got the call from Stanford letting me know this and asking if I could come down to sign the paperwork to send my tumors over to Genentech, I headed down the next morning (yes – I decided to drive from Sacramento to Palo Alto and back the Friday before Labor Day weekend.   It was a lovely 6 hours in my car.)  But – I didn’t want anything to slow down the process.  It was wonderful to meet the team who is conducting the study  - Dr. Holbrooke Kohrt (hopefully you’ll be hearing his name a lot over the next couple of months) and his right hand, Lori.

The plan was that Stanford would send my tumor sample to Genentech this past week and then it will take Genentech about 2 weeks to determine whether I’m eligible.  After checking with my internal contacts at Genentech, they told me that there is about a 30% probability that my tumor will be eligible.  Not great odds but not as bad as they could have been.  I asked if my tumor didn’t have the right make up could I charm my way into the study – with the idea that maybe, just maybe it would still work for me.  Stanford told me that unfortunately they have found that there is basically a 0% chance that the study would work for me if I wasn’t determined to be eligible and by putting me on the drug it would waste my time and my money and all the while my tumors would be growing.  Furthermore, I may be taking the spot of someone who would be receptive to the drug.  I guess to a certain degree there is some comfort in knowing that being pushy just won’t help me.

So – in the next 2 weeks I should finally get the go/no go decision.  Stanford is going to test my tumors as well because they told me that if Genentech tells them that I’m not eligible, but through their testing they think I should be eligible, then they’ll fight Genentech’s decision and try to convince them to let me in.  How lucky am I to work with the great team at Stanford?!

My Rabbi told me that praying to God, asking that he/she make my tumor eligible is not really going to change anything, since it is what it is and God wouldn’t intervene to change the genetic composition of the tumor.  He suggested that I pray for strength whatever the outcome of the testing.   I’ll pray for strength and hope, but with no disrespect to the Rabbi, I will keep the majority of my prayers focused on getting into the PDL-1 study.   

As Pat and I start our 15^th year of marriage, we remain hopeful that this year will be a good year.  That this is the year that I will go into long-term remission.  That this year won’t test our marriage vows but rather we’ll be getting to experience the joy of being together “in health.”

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.