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!

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)