Let the Celebration Begin!!!

Yes – It’s that special time of year again.   March is COLORECTAL CANCER AWARENESS MONTH!  I don’t know about you – but I am putting back up my blue streamers and getting ready for some fiber-filled fun!

In order to properly celebrate this auspicious occasion – it’s important that we all become more aware about the current state of affairs for colon cancer.  The following is information from the American Cancer Society….

Colon cancer is the third most commonly diagnosed cancer and the second leading cause of cancer death in men and women combined in the US. The American Cancer Society estimates that 142,820 people will be diagnosed in 2013 and that 50,830 will die from colon cancer in the United States.

On average, the lifetime risk of developing colon cancer is about one in 20 (5%), however, this varies widely according to individual risk factors.

About 72% of cases arise in the colon and about 28% in the rectum.

Early Detection

With regular screening, colon cancer can be found early, when treatment is most effective. In many cases, screening can prevent colon cancer by finding and removing polyps before they become cancer. And if cancer is present, earlier detection means a chance at a longer life -- generally, five-year survival rates for colon cancer are lower the further advanced the disease is at detection:

•   Over 90% of those diagnosed when the cancer is found at a local stage (confined to colon or rectum) survive more than five years.

•   Once the cancer is diagnosed at a regional stage (spread to surrounding tissue) that rate drops to 69%.

•   When the cancer has also spread to distant sites, only 12% of those diagnosed will reach the five-year survival milestone.

Stage at Diagnosis

Unfortunately, the majority of colon cancers are not found early (before it has spread):

•   39% of colon cancers are found while the cancer is found at a local stage (confined to colon or rectum).

•   37% of colon cancers are found after the cancer is diagnosed at a regional stage (spread to surrounding tissue).

•   20% of colon cancers are found after the disease has spread to distant organs.

Colon Cancer and Age

•   90% of new cases and 95% of deaths from colon cancer occur in people 50 or older. However, colon cancer does not discriminate and can happen to men and women at any age.

•   While rates for colon cancer in adults 50 and older have been declining, incidence rates in adults younger than 50 years has been increasing.

Colon Cancer and Ethnicity and Race

•   Jews of Eastern European descent (Ashkenazi Jews) may have a higher rate of colon cancer.

•   Partly because of disproportionate screening, African-American men and women have a higher risk of developing colon cancer and a lower survival rate (about 20% higher incidence rate and 45% higher mortality rate) compared to Caucasians, Asians, Hispanics and Native Americans.

•   The risk of death is also increased for Native Americans and Alaskan Natives.

Colon Cancer and Family History

•   People with a first-degree relative (parent, sibling, or children) who has colon cancer are between two and three times the risk of developing the cancer than those without a family history.

Colon Cancer Survival Rates

Since the mid-1980s, the colon cancer death rate has been dropping due in part to increased awareness and screening.  By finding more polyps and cancer in the earlier (local and regional) stages, it is easiest to treat. Improved treatment options have also contributed to a rise in survival rates.

•   The five-year survival rate for colon cancer found at the local stage is 90%.

•   The five-year survival rate for colon cancer found at the regional stage is 70%.

•   The five-year survival rate for colon cancer found at the distant stage is 12%.

There are currently more than one million colon cancer survivors alive in the US.

As you will note from the above information – I’ve beaten the odds and I plan to continue to do so for many many years. This month I’m celebrating all of the advances that have been made in colon cancer – many of those by the amazing oncologists that I’ve been blessed to have worked with at Stanford Cancer Center. 

So – enjoy this fabulous month of colorectal fun!  And for those of you who haven’t gotten that colonoscopy…..I can’t think of a better way to celebrate this important month! 

A New Beginning

In life, it is rare to get to work on your passion every day.  Over the past 5 years, my interest in healthcare and new treatments has exploded (I know – huge shock).  So, when I was recruited by a group of biotech companies to run the Sacramento office of their trade association, the California Healthcare Institute, it was an opportunity that I couldn’t pass up.  My job will be to represent biotech companies (like Genentech), biomedical device companies, VCs and research universities (including my beloved Stanford) before the state legislature.

Although I have loved TechNet, over the past 2 years, I have realized that the issues that interested me the most were the ones that my biotech companies were working on – enabling patients to get access to oral chemotherapy, improving the telehealth network, etc.

To have the opportunity to work full time to try to improve access to healthcare and enable companies and universities to create innovative products that will make life better for so many and actually save lives (such as mine) is a tremendous honor for me.

And, what a time to do it.  As I prove that immunotherapy plus radiation can rid my body of cancer, I will be arguing before the legislature that they need to help companies and research universities create new treatments.   

It’s hard leaving the people at TechNet – my colleagues and member companies.  But – to work every day on issues that I am passionate about – well – it really doesn’t get better than that.

In two weeks I will be starting this new adventure.  And I can’t wait.

Radiating Hope

This week has been a little insane.  I began my week by driving down to Stanford to become close friends with the Varian Truebeam radiation machine.  After meeting the phenomenal radiation tech team (the nicest folks on the planet), I settled in to my personalized body mold (we made that a couple of weeks ago).  The techs then adjusted me – taking unbelievable care to ensure that I was perfectly aligned – to the millimeter.  There was no room for error.  Upon determining that I was ready to go, they then called in the incredible Dr. Albert Koong to work his magic.  He proceeded to take multiple x-rays followed by about 1 ½ minutes of very high strength radiation.   My job was just to relax and stay still.  And – fortunately, I was able to do just that.  Everything went off without a hitch and Dr. Koong was thrilled.

Tuesday wasn’t quite so easy.  I arrived at 5:30 to discover that the woman ahead of me was having a tremendous amount of trouble.  She had tumors in her lungs and they couldn’t get her to be still enough to radiate her.  It took 3 hours of trying and they finally gave up and told her to come back on Thursday.  While this was not ideal for me (since I still had a 2 hour drive back to Davis after my radiation), Dr. Koong and I ended up hanging out and hatching all kinds of plans together.  We are going to team up to introduce legislation that could have a significant impact on research universities (like my precious Stanford) and subsequently, cancer patients.  I can’t disclose our plans yet, but once we get our strategy in place, I’ll bring you all in on it (we may need to enlist your help).

Fortunately, the amazing techs were very quick in lining me up and my radiation was quick and easy and I was able to get back on the road to Davis.  I had 3 meetings that I was hosting in Sacramento the next day so I couldn’t stay in the Silicon Valley.   (A quick shout out to my dear friends Shelley & Woody who have let me crash at their beautiful home multiple times – including twice this week.)

Following my meetings on Wednesday I drove down once again and my radiation treatment was nice and uneventful.

As for the side effects – I was primarily a little queasy the first couple of days following the radiation.  Although Dr. Koong had prescribed Zofran for nausea, I refrained from taking it.  I really don’t like taking medication if I don’t absolutely have to do so.  My third night the radiation side effects hit my stomach pretty hard, but now that seems to have subsided and my body is back to normal.

On Thursday, I was back at the Stanford clinical trials building once again for my dose of PDL-1.  So – in a nutshell, this week, we started the process of breaking up my tumors (it takes a while for the radiation to have its full impact) enabling my immune system to get to the cancer and learn what it needs to fight.  On Thursday, we gave my immune system a major boost.  It’s now time for my body to fight this disease itself.

So, when will we know if this crazy theory worked?  No one knows.  It’s never been done before.  While Dr. Kohrt was estimating between 3-6 weeks, Dr. Koong thinks it could be between 4-6 months.    Bottom line, I need to be patient.   Ugh – that’s not so easy for me. 

But – I truly believe that it’s going to work.  A Rabbi’s wife that I have been fortunate to have befriended during this journey reminded me last week of the meaning of my Hebrew name: Chava Rafaella.  Chava means “mother of all life” and Rafaella means “God will heal.”  She said “You are your name.”  And, I fully intend to live up to that name.

You Are Stronger Than It Is. Remember That.

Three weeks ago, I got the e-mail that I truly was hoping not to receive.   My latest biopsy showed cancer was in my lymph node.  I was devastated.  I’d placed so much hope in this experimental treatment that to have the cancer re-emerge was a kick in the gut.  

After a little bout of crying, I wiped the tears from my eyes and called Dr. Kohrt to talk through the results and next steps.  He laid out two options:  1) keep going with the study and check constantly to see if the lymph nodes change.  If they increase, we start radiation immediately or  2) we start radiation immediately if the radiation oncologist thinks that my body can handle the toxicity.   He didn’t hesitate to say that in his opinion, the second option is the best option.  Excitingly, this is the combo that they think will create the miracles – coupling radiation with the immunotherapy. 

When I said to Dr. Kohrt that I was surprised that he didn’t sound distressed about the cancer, his response was that he wasn't concerned at all.  He knew there was a strong possibility that we were going to find cancer in the lymph node and he had already planned a course of action.  In his mind, there were no surprises. “I only get upset when something unexpected occurs and I DON’T have a plan.”

His great attitude gave me the hope I’d needed and I told him that it appeared that I'd live to fight another day.  “Eve,” he responded, “You're going to live to fight not just for one more day, but for many many many more days."  

Just like me, you may think that cancer in my lymph node is a step backward, but it could actually be a strange blessing in disguise.  Without finding the cancer, they wouldn’t have the opportunity to incorporate the radiation.  The providers of the study wouldn’t allow it.  But now my doctors have a reason to “up the ante” and I’m all in.

About 2 weeks ago, I met with Dr. Albert Koong, the brilliant radiation oncologist who is working with Dr. Fisher on my case.  He explained to me that they’re planning to use the next generation of the cyberknife – the Varian Truebeam -  to attack the lymph nodes.  Apparently, it uses an arch of radiation to zero in on the lymph nodes.  Because of the proximity of the larger of the lymph nodes to both my spine and my bowel, they have to be extremely careful and have pinpoint accuracy.  I warned him that he was not allowed to go out drinking the night before my radiation and he even promised to get a good night’s sleep prior to my treatments.

So we are planning to have 3 days of radiation in a row –  February 11, 12 and 13 and then I’ll get my next dose of immunotherapy on the 14^th.

When I spoke with Dr. Koong, he seemed almost giddy about the opportunity to test out the theory that PDL-1 and radiation will work on a colon cancer patient.  I will be the first colon cancer patient in the world to test their theory.  Dr. Fisher wrote me a note last week about what we were about to do and at the end, he signed off, “Eve, just make me famous.”  I plan to do exactly that.

On Thursday I was at Stanford once again to get a mold made for my body to hold it still during the radiation treatment, a CT scan and a PET scan to map out my body for next week’s radiation.

But – this week is free.  I don’t have to drive to Stanford.  I can focus on my job and my family.  Ariel is in a play on Thursday night at her school.  She has been practicing her part for months.  And I’ll be there to beam with pride.  These are the moments that I am fighting for.  This is why I subject myself to treatment upon treatment.  This is why I am willing to be the ultimate guinea pig in the next potential breakthrough for cancer patients. 

As Dr. Kohrt was signing off from our difficult conversation weeks ago, his last words to me about the cancer were “You are stronger than it is.  Remember that.”

Fingers Crossed!

Today, I went to Stanford Cancer Center for my infusion of PDL-1.  I met with the incomparable Dr. Holbrook Kohrt to discuss further what they saw in my scan and outline the plan of action.

It was a great visit today.  Holbrook said that he’s feeling very positive because he feels like we have my cancer under control.  While they don’t like to have any tumor get larger than 1 cm, he wasn’t too concerned. 

As he walked through my scans, I realized that I hadn’t quite understood George the other day.  Bottom line, they know that 2 of the spots that they’ve been watching are cancer.  One of those spots has decreased dramatically and the other has stayed stable.  The two other spots that have increased are actually lymph nodes – they don’t know what is in them.  The biopsy is to see if the growth of the lymph nodes is due to cancer or if it’s just inflammation caused by the drug.

I told Holbrook that George thought that it was probably cancer but wanted to know for sure.  He told me that oncologists have 10 rules that they live by and that one of those rules is that you never turn your back on cancer.  Therefore, they have to assume that the growth is due to cancer unless proven otherwise.  However, he did indicate that it is a real possibility that the growth in the lymph nodes is really just inflammation.

So – tomorrow (Friday), I will be heading back down to Stanford for a CT-guided biopsy of one of the lymph nodes.  If there’s cancer in there then we will move forward with our plan to radiate the tumors in the lymph nodes.  There is no need to radiate the other tumors because they are responding to the drug.

Please send all your “let it be inflammation” prayers my way at about noon tomorrow.

For Your List

You’re done crafting your New Year’s Resolution List, right? No? Good, because I wanted to sneak two more items onto your list:  1) Get a colonoscopy and 2) Write My Will/Trust. 

Some of you have followed my journey from the beginning.  Others of you have joined me much more recently.  Whenever you jumped in, I would imagine that you’re just relieved it’s not your journey.  I’d like for all of you to avoid the chemo, the surgeries, the ostomy bag, the physical and mental pain of dealing with a cancer diagnosis.  I’d like your families and friends not to be subjected to the pain of having a relative/ friend with a colon cancer diagnosis.  What’s the easiest way to do this?  Get a colonoscopy.  It is a very easy procedure and if they find polyps, they snip them off and you’re done.  Colon cancer is the most preventable form of cancer.  Please – prevent it.

As for writing your will/trust….I urge you not to wait until you are facing a life-threatening illness to do this.  It’s much more difficult to do it when you are faced with your own mortality.  If you’ve been putting this off, please just schedule some time and do it.  You’ll feel so much better.  

I’m not going to harass you any more (at least for awhile).  I just figured that as long as you have that list out – I wanted to make sure that you added these critical items.

Now, on to a great 2013!