A Mixed Bag

I’m going to warn all of you.  This will be a very disjointed post.  It represents the uncertainty and craziness of this cancer journey.  I’m in a strange place – where there are a lot of unknowns and not a lot of answers.  We are looking at many different options because there isn’t a clear path forward.  Just wanted to start this off with that word of warning for the confusion that is about to ensue...

I must apologize for the delay in giving you all the results of last Monday’s CT.  I had a crazy week.  After leaving Stanford on Tuesday, I had to rush back to Sacramento for meetings and a work dinner.  And on went the week without a minute of pause. I finally arrived home late on Friday night and – quite honestly – I wasn’t up to doing anything but watching “How to Lose a Guy in 10 Days.”  If you haven’t seen this movie – I highly recommend it.  It’s hilarious.  And yesterday was spent running around doing a million errands. 

Enough with the excuses.  In a nutshell – my results overall were good.  On the positive side, there was no tumor growth.  My current tumors didn’t get any larger (not even a mm) and there was no sign of new tumors.  This is tremendous news.  It proves that the treatment is continuing to work.

However, on the not-so-great side, my tumors did not decrease either.  Interestingly, because my tumors neither increased nor decreased, Stanford is not able to make a case to Genentech to keep me on the study.    

But, remember the other study I had written about?! When I asked about it, I was told that unfortunately they have lost $3 million of the funding. The donor’s loved one passed and so he is no longer inspired to give to support the study.  Stanford is trying to regroup quickly and find a way to fill this enormous funding gap.  Have any ideas? 

I am not joking.  If you have any suggestions or know of any donors that are looking for an opportunity to fund a phenomenal study, let me know. 

Basically, the study consists of 4 different parts.  The phase that I’m most interested in would combine infusing PDL-1 with injections of ipi directly into the tumors.  As I stated in my last blog – they believe that this will increase the efficacy of the drugs while dramatically decreasing the toxicity levels. I have all of the information on the study and would be thrilled to connect you/your contacts with Dr. Kohrt.  He would be happy to meet and walk through it with anyone who may be able to help.  At the end of one of his recent emails to me, he wrote “I promised everyone, you and all the patients, that I will make this happen.  Even if I need to go beg on the streets.”  I really adore him.

Since that study isn’t funded and I’ve finished my 16 rounds with Genentech—and I’ve gone through all of the chemos out there—our plan is to watch and see how my body does without any drugs for the next 3 months.  If the tumors increase over the next 3 months, they will go back to Genentech and ask to put me back on the study as a ‘compassionate use’ since we know that the treatment works for me.

Drs. Fisher and Kohrt have promised to watch me carefully over the 3 months. They are concerned because my CEA has continued to rise (normally indicating cancer growth).  They have told me that they’ll give me a CT earlier if they believe things are escalating.

This is a remarkable time.  I will no longer have drugs to fight this disease.  I will have to call upon all of the non-western medicine that I have learned over the past 5 ½ years to get me through this – prayer, acupuncture, breathing, green leafy vegetables, yoga (my knee surgeon just cleared me to do yoga!), reiki and a lot of laughter.  

Over the next 3 months, we’ll see what my body can do. I feel both scared and elated. I feel like a child learning to ride a bike when the training wheels are taken off.  Hopefully, that bike will stay upright.

And – that dinner that I rushed to after my final round of PDL-1 on Tuesday?  Interestingly enough, it was with some executives at Onyx to discuss the legislative year.  During the dinner, I told them about my journey.  With excitement, they told me about one of their drugs and its potential use for colon cancer in combination with PDL-1. When I told Drs. Fisher and Kohrt about this new possibility, they were very interested in exploring this option and are now following up with Onyx. 

 

You never know what’s around the next corner…

 

Scanxiety

Tomorrow, early on a Monday morning, I will be back at Stanford for my next CT scan.  No matter how many times that I do this, it never gets easier.  I had a fitful night of sleep.  Not knowing whether my entire life is going to change in the blink of an eye is so scary.  What if the tumors have grown?  What if the tumors have spread?  Am I about to be subjected to chemo or surgery?  Or what if the information is worse? 

No matter how fearful tomorrow may be, I remain grateful for this past year.  I had a wonderful, relatively pain free summer (except recovering from the knee surgery from my ski accident).  We recently got back from spending 3 glorious weeks in Europe, visiting the sights of London and enjoying the company of friends and family in Belgium and Spain.  We then headed off to our annual Lair of the Bear trip in the Sierras for a week of rustic fun.  What a blessing to have a relatively worry-free summer without chemo.  This was the first summer since 2007 that I was not taking chemo.  I cannot overemphasize how great it felt.  My hope is that thousands of other cancer patients will also be blessed with the same opportunity to have access to this treatment and will get a little bit of relief from the worry and the chemo. PDL-1 gave me an amazing year of life.  Oh - how I love Stanford and Genentech.

So – what happens next?  We’re not sure.  The standard protocol for patients on PDL-1 is that they are approved for 16 cycles.  I have already had 15.  Officially, I’ll be kicked off of the study after this week.  My oncologists have told me that if tomorrow’s scan shows that the tumors are holding steady or decreasing in size, that they will go back to Genentech and request that I remain on the study.  If Genentech turns them down, then they are considering putting me on an investigator-funded study (paid for by Stanford) that they are about to launch which would combine PDL-1 with a drug by Bristol-Myers Squibb called Ipilimumab (known as ipi).  While ipi has been infused in the past, because of the high level of toxicity associated with this delivery system, Stanford is planning to inject ipi directly into the tumors.  This will act much like the radiation treatment that I had back in February, which broke down the tumors so that the immune system has “bite sized” pieces to absorb and learn from.  Stanford is the only cancer institute in the world that will be doing this protocol.  It looks like I'll continue to be one of the guinea pigs of colon cancer....

Of course, my biggest concern is that the tumors grew or spread.  In that case, I’m really not sure what the plan will be.  Fortunately, I have the best oncologists a girl could hope to have to create our plan of action.

At 9 am tomorrow, I will be getting my CT scan and then will be meeting with Drs. Fisher and Kohrt to talk about next steps.  (Please send some prayers/good thoughts my way tomorrow morning....)

I’ll keep you all posted when I know more – now it’s time for me to get some rest….