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!

NEED YOUR HELP NOW TO PASS CRITICAL LEGISLATION

Ok folks – I need your help.  Yes – all of you.   Particularly you Californians…..  But honestly – I need everyone to engage.

So – this is the situation.  There is a crazy debate in the California State legislature over whether a doctor should be notified about what’s going into their patients.  I need your help to make it clear to legislators that it is important that physicians know what their patients are taking – particularly because the drugs that we’re talking about are for maladies like cancer, rheumatoid arthritis, Crohn’s disease and many many others.

Now – this is going to sound complicated, but just hang with me, or, if you’d prefer, just go directly to the end of this and get your marching orders….

I need your support on Senate Bill 598 (Hill), which outlines how pharmacists can substitute biologic medicines with a new and more affordable class of FDA-approved treatments called biosimilars.

Biologic medicines are the next generation of innovative medical treatments.  They are providing therapeutic options for illnesses that were once considered untreatable such as cancer, Parkinson’s disease, multiple sclerosis and Alzheimer’s disease. Biologic medicines are vastly different from traditional prescription drugs because they are made from living cells – not chemical compounds. These biologically-based treatments are highly specialized and they can also be extremely sensitive.

In the next couple of years, biosimilar medications are expected to enter the U.S. healthcare market. They are copies of an original biologic medicine (these medicines are either delivered via infusion or taken via syringe) and hold the promise of providing similar results as the original biologic at a lower price.  However, unlike generic pills, biosimilars are not structurally identical to the biologic products they seek to copy; thus the name biosimilar. Due to the sensitive nature of biologics, the slightest variation from the original biologic medicine can result in an immune response or other patient side effects.

Specifically SB 598 would:

·      Update California law to allow for greater patient access to life-saving, less costly, FDA-approved biosimilar medicines.

·      Allow pharmacists to substitute a biosimilar for a brand biologic when the biosimilar is deemed interchangeable by the FDA.

·      Require that a patient’s physician is notified when a biosimilar medicine is substituted for a medication the doctor originally prescribed.

·      Require pharmacists to keep a biosimilar substitution record on file for a period of 3 years

As the next generation of biologic treatments is introduced, SB 598 ensures that patients will have access to these innovative, lower cost medications and recognizes the importance of tracking and tracing the use of sensitive medicines in the event of an adverse patient reaction.

There is another competing bill AB 1139 (Lowenthal), which does virtually the same thing except for one significant difference – AB 1139 does not require a pharmacist to notify the physician when they switch out the biologic medicine.

The problem is that unlike pills, these biologic medicines can have an immune reaction months after taking the drug. 

Given the severity of the diseases being treated with biologics and the vulnerability of the patients, physicians should be given every opportunity to monitor their patients taking these medications, and patients should have the benefit of their physicians having all relevant information.

Notifying the doctor can be a valuable tool for both the physician and the pharmacist, and can be done within the existing system of communication without disrupting the clinical and financial opportunities associated with substitution.

Below you will find a sample support letter for you to use.  If you’d like a fact sheet, just e-mail me and I’ll send it to you.

Why do I need your help?  There is a huge effort by a bunch of lobbyists in Sacramento to confuse the issues and convince legislators not to support physician notification of a biologic drug switch by a pharmacist.  At this point – it’s mainly pharmaceutical companies that are battling this out and so legislators are reluctant to vote on the legislation.  We need more patients and people that care about patients to engage.  My oncologists feel like what we’re doing is very important.  In fact, the fabulous Dr. Holbrook Kohrt actually wrote an oped for the LA Times because he is so incensed that there’s an effort to keep doctors from being told about the drugs going into their body.

Enough is enough.  This silly debate must end.  Please help me educate the legislators.  Sit down and scrawl out a letter today.  Heck – I don’t care if you just cut and paste the draft letter onto a piece of paper and sign it.  Ask all of your friends, family and random contacts to send a letter.  I need a mega grass roots campaign to go up against the thousands of dollars being spent by the opponents of doctor notification.

We need the letters to hit by the end of this week.  Can you do it?  Will you do it?  Please, please, please help.  Lives are dependent on this.  Someday, it could be mine….

SAMPLE LETTER

DATE

Senator Jerry Hill                                           SUPPORT SB 598 (HILL) –

State Capitol, Room 5064                               PATIENT ACCESS TO BIOSIMILARS

Sacramento, CA 95814

Dear Senator Hill,

I am writing in support of SB 598 which would update current law and allow pharmacists to substitute biologic medicines with a new and more affordable class of FDA-approved treatments called biosimilars.

For patients who suffer from one or more chronic illnesses, biologic medicines represent life-changing, and often lifesaving, therapies. They have improved quality of life, alleviated symptoms and reduced both disability and mortality rates. This new generation of treatments has transformed the health and lives of patients and has given them hope for recovery.

In the next couple of years, biosimilar medications are expected to enter the U.S. healthcare market. They are copies of an original biologic medicine and hold the promise of providing similar results as the original biologic at a lower price.  However, unlike generic drugs, biosimilars are not structurally identical to the biologic products they seek to copy; thus the name biosimilar. Due to the sensitive nature of biologics, the slightest variation from the original biologic medicine can result in an immune response or other patient side effects.

As important as these new therapies are to patients in California, it is just as important that public policy ensures the safety of the patients who rely upon them. That is why we are in strong support of SB 598. Specifically the bill would: 

·      Update California law to allow for greater patient access to life-saving, less costly, FDA-approved biosimilar medicines.

·      Allow pharmacists to substitute a biosimilar for a brand biologic when the biosimilar is deemed interchangeable by the FDA.

·      Require that a patient’s physician is notified when a biosimilar medicine is substituted for a medication the doctor originally prescribed.

·      Require pharmacists to keep a biosimilar substitution record on file for a period of 3 years

SB 598 is a common sense bill that will ensure that patients have access to life-saving, lower cost, FDA-approved biosimilars and also recognizes the importance of tracking and tracing the use of sensitive medicines in the event of an adverse patient reaction.

On behalf of patients who depend upon safe, affordable, effective medications for their health and well-being, I urge passage of SB 598.

Sincerely,

FIRST NAME, LAST NAME

TITLE (if relevant)

ORGANIZATION (if relevant)

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!