Third Post

10.21.15 Entry #3
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Non-squamous Non-Small Cell Lung Cancer, Adenocarcinoma, Stage 4 is the type/stage of cancer that I have. Over the last week we have learned that I have thus far tested negative on the various cell mutations that can occur with this type of cancer.  This data is important to help us determine the appropriate treatment plan, and this is the information we have been waiting to get.  

If you have a mutation (the typical ones are EGFR, ALK, ROS1) they treat you with some wonderful new medicine that is targeted towards just the mutated cells vs. all your cells and thus is less impactful on your overall body.

Based on this information, my course of treatment can be one of at least three paths:

• Regular Chemotherapy
• Regular Chemotherapy combined with a clinical trial
• Immunotherapy medicine that is connected with a clinical trial

Over the last several days, I have been working hard to discover the various options for my treatment and discovering the clinical trials around the country that I qualify for.  I have spoken with doctors/hospitals in Boston, Houston, San Diego, Chicago, Utah, and Bay Area due to much work from many of you! Here is a short summary of what I landed on:

• UCSF: Jan and I visited with a doctor in San Francisco on the 19th of October and discovered they have a clinical trial that starts with Chemotherapy and then potentially adds a drug called Demcizumab. This drug is targeted at killing the stem cell root which is good because what Chemotherapy does is it kills the top of the cells not necessarily the root…and the root then grows back.
• Stanford: we met with our doctor on the 20th to understand his perspective and what he would suggest.  At Stanford he could offer us Chemotherapy but nothing additional as my make up does not qualify me for one of the clinical trials they are running.
• Huntsman Cancer Institute: we spoke with our amazing doctor in Salt Lake and they have an Immunotherapy trial that I do qualify for and is very interesting.

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The challenge with this is that the level of uncertainty is quite high with any clinical trial (that’s why it is an experiment) and when you have to make a decision about what is best for your short and long term life expectancy it is nice to have some data that just does not really exist to the level you would want.  So the role of intuition, feeling, spiritual confirmation, etc. combined with all the data and expertise you can collect from people in the know becomes an even more important element in the decision making process.

We decided to go with UCSF based on several factors:

• Guarantees you get basic chemotherapy
• Potentially I get this new drug, Demcizumab, that is in trial that I could not get in any other way that could be a winner for killing stem cell roots.  I say potentially because 2/3 of the patients get the drug, 1/3 get a placebo…so you run a risk that you don’t get anything but sugar water, and they don’t know if the drug works all of the time. The drug is in Phase II which means that it has worked and there is money and people that think it has a good chance of working.
• It allows us to stay at home and have the loving support of our family and friends which btw is off the charts!
• As a person on trial, you are special and the attention on you is microscopic as they want to learn everything about you and I get to contribute to new insights that will help people in the future and hopefully help me right now!
• When we asked our Stanford Doctor, what he would tell his brother to do…he said, “I’d tell him to go to UCSF in this situation”
• The immunotherapy drugs can be taken advantage of in the next phase or Line 2 as they call it

The other options:

At Huntsman, they have a very cool clinical trial as well that is based in what is called ImmunoTherapy that is the latest and greatest theory on how to attack cancer. Their trial tests one patient with chemo, and one with Immune therapy #1, and one patient with Immune therapy #1 & #2 at the same time.  From all of this they evaluate how the immune therapy impacts your tumor (cancer) vs. how chemo attacks it and then they compare the results. They are testing what is more effective…to start with chemo and then go to Immune therapy or visa versa. The downside of this trial is that you are not guaranteed chemotherapy.

Stanford: Given my make up the only thing they could offer was basic chemotherapy

So the fun part…in my work we often talk about why customers buy a particular product or service. My colleague at InnovatorsDNA, Clayton Christensen, has said that people buy something for functional, social, and emotional reasons and often times are not aware of why they are buying certain things.  To the extent you can pinpoint your focused customers key interests you can build your product/service to meet those sometimes less that clear motivators.

I think I could expand this to say that everything we do brings us some kind of payoff or joy or we would not do it...the key is being conscious of why we are doing something so that we can assess if our choice is the best decision for what we are hoping to accomplish….and then being able to ask ourselves…Are making decisions about our time and energy that aligns with our real values and what we want most?

In making our decision about where to do treatment, if I had to prioritize where I wanted it to happen prior to collecting as much data as possible it would have been

1. Huntsman
2. Stanford
3. UCSF

The reasons for this are that Huntsman is just an amazing facility and they have an outstanding vision. Dr. Akerley treated me the way I have always tried to treat my customers (always available, generous with his time, understanding, looked at quality of life issues, honest and upfront). My experience with doctors prior to this is that they are hard to get in touch with, they have never given me their private cell phone, and they always seem to have to go to visit another patient…so not business like in my view!...all of my doctors have challenged my paradigm and experience of doctors to date but no one as good as Dr. Akerley at Huntsman.

Going to Huntsman would have meant living in Park City (positive), we have amazing friends there just like I do in Santa Cruz that would take care of me, and I would be close to all my kids assuming we took Henry out of school. So it was a great option for all of these reasons.

Stanford only gave me chemotherapy option, so there was nothing special about that except the doctor was great and it is tough to go wrong with medical treatment at Stanford….and yes the facility and ease of being there is nice…and having a friend on the Board of the hospital doesn’t hurt your patient experience!

The downside of UCSF is 2.5 hours away if traffic cooperates, and as much as I love the city…it is a different game as soon as you go into the city….traffic, horns, lots of people, older buildings, the feeling is less loving more clinical and the creature comforts of Stanford and Huntsman are just not part of the UCSF experience. The trial requires that I go there for 5 months 1 day a week for 3-6 hours, and then every 3rd week indefinitely after that.

If I go back to the concept of decision making and functional, social, and emotional reasons for why we do things….it was clear that the social and emotional reasons led me to Huntsman and Stanford and the functional reasons led me to UCSF. I wanted the functional reasons to point me towards Huntsman or Stanford but it did not happen….my takeaway from this was that I was aware of these factors in the decision making process and it made it easy to make the decision given what was most important to me even though I wished it would go a different direction.

I have at times in my life been so interested in a certain desired outcome in a situation, that I would do things to try and influence that outcome to be realized when in reality maybe it was not the best outcome for me at the time. I’m not saying you should not do everything you can do to help achieve an outcome…you should, but you should make sure your intentions are pure and remain open to what the right path forward might be vs. forcing a path forward.

I highlight this because I know that many people make decisions for the wrong reasons and are often times not aware of the impact of social and emotional factors that are very important but must be considered along side the functional factors.  When influenced by the wrong things, in the end we typically pay the price and there are unforeseen consequences that we face that we do not like.  

In my case, even though I am not initially as excited about some of the aspects of the UCSF experience, I am conscious of it and now I can turn my thoughts into positive ones and make the experience be rich on all the elements as I put my full self into it and appreciate and take advantage of the opportunity vs. wishing I was somewhere else. I know it will be a unique experience and that when I look back it will make perfect sense!

Next Steps:

• On October 23rd, I will spend the entire day at UCSF getting tests (brain mri, CT scans, PET scan, blood tests, ECG, etc.) to help determine if I am actually qualified for the clinical trial. There is a chance after all of this that for some reason I don’t meet the requirements….and then it would be back to the drawing board….stayed tuned for my next post…I have to create some suspense on this crazy road trip!
• Have a great day, tell the people around you how much you love them and even more important than that act so they know you love them.  ACTA NON VERBA is latin for Actions speak louder than words!

I am so thankful for you...I believe I have the most outstanding community of friends in the world…and if there was a way to measure this I know the data would back it up!

Cheers,
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Greg