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….

Yes- I'm Finally Posting (although I'm having some technical difficulties...)

I know it has been a very very long time since I have written on this blog.  I'm assuming that everyone who is reading this has had to look up my blog, since, for some strange reason, it has stopped forwarding my blog posts and, for the life of me, I don't know what happened.  Because it stopped sending them out, I ended up just not writing anymore because I figured that no one would actually go to the blog and it would be a waste of time.

However, I have been getting emails and calls from many folks who are concerned that they haven't heard any news. Therefore, I've decided to just go ahead and post and hopefully I'll soon figure out how to fix the automatic sending of the blog (BTW - if you know how to fix the RSS feed - please let me know!)

Ok - now that you know why it has been so long since I've posted - I'll give you brief synopsis of the latest and greatest.

Bottom line?  I'm doing great.  My latest scan from around a month ago showed 4 tumors remaining stable in size.  One even went down dramatically (from 1.7 cm to .4 cm).  There has been no spreading and no new growth.  This basically means that the treatment is working and my body is effectively keeping the cancer in check.  Would I have liked to have seen the tumors decrease even more in size (or go away)?  Absolutely.  But, I'll take these  results.  I'm able to remain on my PDL-1 treatment and enjoy my amazing life without any nasty side effects.

So - what's next?  Well, I've been approved for two more rounds of treatment by Genentech (standard for the study is 16 cycles, but my oncologists are asking that Genentech allow me to have a few more rounds to see if we can lessen/eliminate my tumors).  If Genentech says "no" then Stanford has yet another study that they want to try utilizing PDL-1 and they would inject another drug directly into my tumors.  I need to learn more about this, but Dr. Kohrt is very excited about this and is very enthusiastic about trying it out on me.    Stanford is the only cancer center in the world doing this new protocol. And - this one also has NO SIDE EFFECTS!  Have I mentioned how much I love Stanford?

I'll keep you all posted as we know more, but for now, I'm just enjoying feeling great!

I'm also loving my new job fighting for innovation in healthcare.  I get to spend every day focused on something that I truly care about.  What a gift.

I'm also getting to help causes I care about.  Just recently I was honored to speak at the American Cancer Society's annual breakfast which was focused on breakthroughs in cancer research.  It was wonderful making this speech representing both the California Healthcare Institute and as a patient who is a poster child for why it is important to fund cutting edge research.

Most importantly, I've been able to spend time with my wonderful daughters. Just two weeks ago they turned 10 and, against all odds, I'm here to celebrate with them.

As we see the young ladies they've become, Pat and I are both incredibly proud that they are our children.  Living with cancer has made them loving and empathetic.  They have weathered some rough times, but have come out stronger in the end.

There's much more I could write about, but I think I've covered the basics.  Hopefully, I've eased any concerns that any of you had about my well- being and I'll try to blog more often (and if anyone can help me fix my RSS feed, I'd be so grateful).

I hope that all of you are having a glorious summer and living life to its fullest.

Ellie needs help with a puzzle, so I've gotta run....

Before Mother's Day Ends - A Word or Two for Shirley

Today, as I was calling my mother to wish her Happy Mother’s Day, it occurred to me how very fortunate I have been to have had Shirley Grossman as my mom during the past 5 ½ years as I battled cancer.  I have paid tribute to a lot of folks over the years in this blog – particularly my doctors, husband and children.  However, the unsung hero throughout this entire ordeal has been my mom.

I can’t possibly imagine the pain of finding out that your child has cancer.  From the beginning, I have said on multiple occasions, “Thank God that I’m the one that has cancer and not one of the girls.  I can handle this as my struggle, but to watch one of the girls go through it – that would be more than I could bear.”  A few years ago, we had a brief period when we thought that Ariel had cancer and I felt like curling up in a ball every time I thought about it. 

From Day 1, second to Pat, my mom has been my biggest cheerleader.  She jumped into action, reading everything she could get her hands on about how to beat this disease.  She flew down for each surgery that I had.  She came with me to oncology appointments.  She took care of the girls.  She took care of Pat.  And – she took care of me.  Not just my physical needs, but my spirit, too.  She never is without her necklace that reads simply “Hope.”

I can’t imagine the fear that she has endured.  My rollercoaster has been hers, too.  But she has been strong and confident that I’m going to beat this.  I’ve written multiple times on this blog about this cancer battle being a mental struggle as much as it is a physical one.  I’m constantly looking for clues that the cancer is going away or that it’s growing.  Every pain in my body I attribute to cancer growth (Pat finally said the other day, “Eve – you have pain in your hip because you’re getting old – not because you grew more cancer.”)  Just a few weeks ago, a sharp pain in my gut had me on the verge of tears for 3 days because the docs told me that it was possible that the pain signaled tumor growth in my colon (they eventually decided that it was either a gas bubble or someone with an “Eve Voodoo Doll” poking at it.)  Every scan creates a huge amount of anxiety.  It’s exhausting.  And I know it’s exhausting for her, too.

But – through it all, she never showed anything but confidence in my ability to fight this disease and win.  She is so determined.  Her will is so strong that it lifts me up and makes me fight harder.  For those of you who know my mom, you know how disciplined she is – exercising every day, never eating sweets, working harder than everyone else, always excelling at everything she takes on.  Which makes me so lucky to have her in my corner – fighting this battle along side me.

So – today – I want to pay tribute to my mom and say a special thanks to her for her strength, wisdom and love.  I am so very grateful. 

Happy Mother’s Day to you, mom, and to all of the other wonderful moms who are fighting for their children's health and happiness every single day.

A Reminder

Yesterday, we took the girls to see the Broadway production of Billy Elliott.  It is truly a phenomenal show.  I had seen it many years ago, but I had forgotten the story.

About a third of the way through the show you learn that Billy Elliott’s mother is dead.  They don’t say how she died – but apparently she died when he was young.   At this point in the show, 11 year-old Billy reads a letter that she wrote to him that he wasn’t to open until he was 18 years old.

This is what she wrote:

I know I must seem like a distant memory to you.

Which is probably a good thing.

It will have been a long time…

And I will have missed seeing you grow,

Missed you crying, laughing and shouting and….

I will have missed telling you off.

But please know that I was always there

With you through everything.

And I always will be…

---And I’m proud that you were mine.

Always be yourself.

I’ll love you forever.

As Billy and his dance teacher recited the letter, tears streamed down my face.  Every so often I have moments like these.  When the reality of what I’m dealing with and what may come to be is like a punch in the stomach.

Fortunately, Ariel had wrapped her arms around mine and had her head on my shoulder during this scene.  I grabbed her tight and vowed that I would continue to fight as long and as hard as I could to stay alive.  I am excited about where I’m at on the health front.  I’m feeling better than I have in years.   But it’s when I feel well that I have to remember all that I have learned over the last 5 years.  It’s easy to forget all of my lessons regarding appreciating every moment, eating right, not working until all hours, taking time to breathe, focusing on the things that matter and so many more…

I guess that yesterday’s show was a helpful reminder for me.  I realized that no matter how long I have, whether it’s a year, 5 years or 30 years, that it is my responsibility to make sure that my daughters know how much they are loved and cherished.  And I’m going to make sure that they hear it every day.

Healing From Within

My body has learned how to fight cancer.  

On Thursday, I received the news.  My CT scan showed that both lymph nodes that had been radiated had decreased in size.  But, the news that really thrilled everyone at Stanford was that even the tumors that were not radiated significantly decreased in size. The only explanation was that the study worked.  By combining immunotherapy with radiation, my immune system learned how to recognize cancer as a foreign body and killed it.  This is huge.   

Let me say it again…. This Is Huge.

Drs. Kohrt and Fisher, along with all of the wonderful support staff of nurses and coordinators, were joyous when they shared the news.   Dr. Fisher thanked me for making him famous.  Dr. Kohrt was grinning from ear to ear.  My girlfriend Shelley (who came with me to hold my hand in case of bad news) and I were crying.  Thursday was a day filled with a lot of hugs.  When I saw my radiation oncologist that night (coincidentally there was a colon cancer event at Stanford that evening), he was beside himself with joy.  He said that while they hoped that their theory would work, they had no idea if it would actually pan out.  They were making it up as they went along...this had never been done before on a colon cancer patient.  But, they guessed right.  He kept emphasizing that because we proved it could work, he would now be able to make the case for others to follow the same protocol.  He was so happy about how this will open up opportunities for so many others.   

I can breathe again.

So much of this journey has been about self-exploration.  Digging deep within to find strength to continue the battle, when it appeared hopeless.  As you all know, I’ve approached this cancer holistically – depending not only on the brilliance of my Stanford docs but also trying to do what I could to help my body succeed (acupuncture, Chinese herbs, changes in eating, yoga, speaking to spiritual leaders and healers of all kinds, visualization and so many other approaches).  But – what we’re doing now with my immune system is the ultimate in self-healing.  My body has just proved that it is capable of fighting cancer itself.  In an ideal world, we won't need to poison cancer (and the rest of the body) with chemotherapy and hope that if we throw enough toxins at it, it will kill the cancer for the long haul. That method hadn’t worked for me.  The chemo was never strong enough to have a lasting impact.  But we finally found something stronger than cancer – the immune system.    And now with a little help from Genentech, a patient's immune system can now heal the body itself.

So what’s next for me?  Every 3 weeks for the next several months I’ll continue to go to Stanford for my PDL-1 immunotherapy drug.  In 3 months I’ll get another CT scan.  They believe that we’ll see continued reductions in the size of the tumors because the radiation that I had last month will continue to break down the tumors and enable the immunotherapy to do its job.    The hope is that when we hit the one-year mark, all of the tumors will be gone.  We’ll then monitor me for the next couple of years to ensure that the tumors don’t grow.  We may end up adding more radiation.  We may end up adding more immunotherapy.  The beauty is that because we know that these both work on my tumors, they remain a part of our arsenal to use for as long as we want.

It is a time of much happiness in our household.  As Colorectal Cancer Awareness Month comes to an end, I am feeling grateful for the care that I have been blessed to have had over the past 5+ years that has brought me to this moment.  I look forward to the day when we will be celebrating the end of colorectal cancer.  And – after receiving the results from Thursday, I truly believe that day is not that far away….

Nachshon

This week Jews throughout the world are celebrating the Passover holiday.  A very poignant part of Moses’ leading the Jewish people out of slavery and into freedom was when they approached the Red Sea.

As you may recall from the story of Exodus, when the Israelites reached the Red Sea, it did not immediately part.  Hearing the Egyptian chariots quickly approaching, young Nachshon stepped out into the Red Sea with faith that it would part so that the Israelites could be saved.  But the sea did not part.  As Nachshon continues to enter the water – first to his ankles, then to his knees, his waist and his chest – the sea still did not part.  Nachshon’s faith did not waiver and finally, when the water reached his nostrils, the Red Sea splits and the Jewish people are saved.

On Thursday, I will find out whether my stepping out into the water worked.  I will get my CT on Wednesday night and will find out my results on Thursday.   These past 6 months I went out into the unknown.  I took a leap of faith that this new untried protocol would work.  Honestly, like the Israelites, I had little choice but to enter the waters….the alternative would have had dire circumstances. 

I pray that this study worked.  If my tumors stayed the same size or decreased in size, we will remain on the study.  If my tumors increased in size, then we’ll have to determine next steps – but I will most likely not be continuing the study.

Please send some prayers my way that on Thursday the Red Sea will part and my tumors will have cooperated. 

Happy Passover!