Scientific Guardian Angels Appear: Vol. 2

To begin with, my CT scan was good – my tumors are shrinking from the FOLFIRI + Avastin chemotherapy I am currently taking!  I have had a 4 week break – the side effects go away after 3 weeks, so I even recently snuck in a 10k run! 🙂 I will be continuing to take chemo biweekly for now.  But that is a battle win (which I am very happy for!!) – for today’s post I wanted to focus on an update on my attempts to try to win the war.  I’m excited to finally be able to share an update on my personal cancer research project!  I wrote a post almost exactly one year ago back on March 11, 2015 entitled “A SCIENTIFIC GUARDIAN ANGEL APPEARS”.  To refresh your memory, I recommend you re-read it.  Note that the new post title is now pluralized – it has been a very busy 12 months!

A New Low Point

In a nutshell, February, 2015 was my low point in terms of Scientific Hope for my own treatment.  I know… that sounds very out of character for me but especially for the newer readers of the blog, what happened?  Melanoma happened.  Right in the middle of treatment for my Stage IV colorectal cancer (CRC), I was blindsided with a surprise Stage I melanoma diagnosis for which I underwent wide-excision surgery last February.

Even though I was told I had a 98% chance of melanoma cure from this surgery, as discussed in my post “SCHÖPFERISCHE ZERSTÖRUNG” this really complicated my CRC treatment plan.  Why? My treatment plan had included the planned use of clinical trials as much as possible. But….. Many (most?) clinical trials exclude patients who have been diagnosed with more than one type of cancer within the previous 3-5 years.  I would be forced to attempt “Compassionate Use” exemption situations which are far from guaranteed…

Last February I was minutes away from signing the paperwork for my first immunotherapy clinical trial when the paper was literally taken out of my hand.  The possibility of the entire cutting-edge science clinical trial path that I had been carefully strategizing evaporated in front of me in the blink of an eye.

Frustrated-Sad Scientist

As a scientist I think this hit me harder than my original diagnosis.  Why?  Because I felt it take away my science.  I felt it take away my scientific Hope. I honestly think I am cured of my melanoma (and all monitoring data since then supports that belief) but 3-5 years is a long time period in a Stage IV CRC patient’s life…

I found the irony of being a scientist who had been a co-inventor member of the team that discovered a FDA-approved cancer drug – now being excluded from cancer clinical trials for himself – was an incredibly cruel twist of fate.

A Scientific Guardian Angel Appears

Then… in a perfectly timed “coincidence” just a few short weeks later, “A SCIENTIFIC GUARDIAN ANGEL APPEARS” happened.  Even 12 months later I am still blown away by it.  It brought back (major) scientific Hope into my personal treatment plan life!  It was potentially a way to access cutting edge science without relying on clinical trials blocked to me by my melanoma.  Since then, I have provided vague mentions of a research project going on “in the background”.  For various reasons I was not able to publicly talk about it – but I can now start to give some information on the exciting things that have been going on!

What has been going on for the past 12 months?  A lot of data generation – very extensive profiling of my entire genome, my original primary tumor, as well as extensive profiling of a metastatic lung tumor and blood biopsies to monitor tumor evolution.

OK – You have been doing a lot of profiling… Great… But what can you use all that data for???

Even though I haven’t specifically talked about the project until now, I have made generalized comments about some of its components over the past year. Why? Because the research project data being generated could in theory be used for a potentially curative immunotherapy and I wanted to share what I honestly believe may become key components of cancer therapy in future years.

As a scientist-advocate, I am especially excited that the research being done on me could hopefully be used to push the ball towards that goal line for other CRC patients as well!  

Is there a clinical trial at this point? NO.

What we have been doing is collecting a lot of data that we hope can facilitate a clinical trial in the future.  My collaborators/research team at Human Longevity Inc. (I love the sound of that name by the way!) in collaboration with my clinical team at UCSD-Moores Cancer Center have been busy collecting and doing extensive profiling of my tumors and comparing them to normal tissues.  After determining my personal tumor mutanome (I have 127 mutations if you want to keep count at home!) – they have been busy determining which mutations are “immunogenic” i.e. which ones are seen by/activate my immune system.

The goal is for this huge data set to facilitate a future fully personalized immunotherapy.  This basic concept is at the absolute cutting edge of oncology science and I wrote about it recently in my post “THE CURRENTLY INCURABLE SCIENTIST: YOUR OWN PERSONAL IMMUNOTHERAPY”.  I am a firm believer that personalized immunotherapy, as a treatment component, is currently the absolute best shot I have at a potentially curative treatment.

We are doing everything possible to line me up to take that homerun swing for a potential cure. Yes, you heard me right… a potential cure. I also believe that the research being done has the potential to help the rest of the CRC community.

Although I highly recommend you read the above link, knowing that some will not, here are the concepts of a potential clinical trial in a nutshell.

  • Use a personalized immunotherapy to “teach” my immune system to recognize my tumors as something dangerous that needs to be attacked/removed.
  • Add in immune stimulant immunotherapy(ies) to help the immune system do this job.

Nature_Personalized Vaccine_Mouse Efficacy_Fig 3b

Fig 3b from Kreiter S. et al. Nature. 520(7549), 692-6 (2015). Used with permission.

So far my scientific Hope is based on linking together a few pieces of evidence – as you see, all are very recent publications – we are working at the absolute cutting edge of science:

  1. A paper in the top journal Nature last year showed the power of personalized vaccines in mouse models of colon cancer, even in the absence of immune stimulants. Pasted above is a Figure from this paper (used with permission; “Pentatope” = “the vaccine”) showing the immune system attacking the cancer in the mouse model of CRC vs. uncontrolled growth.  Also shown is the dramatic impact on CRC lung metastases in this mouse model, in the absence/presence of the vaccine (hint: the lung covered in nasty metastases knobs is the one that didn’t get the vaccine!).  Once again with no added stimulants or drugs – just the therapeutic vaccine.  Of course, mouse models do not necessarily translate into similar human activity but this is very exciting preclinical data none-the-less that I hope eventually translates into clinical efficacy!
  2. A paper in the top journal Science also last year showed clear positive impacts on the immune system in melanoma patients receiving personalized vaccines – showing at least on that level, translation into clinical efficacy.
  3. Another paper in Science from last Fall showed that in the vast majority of GI-cancer & CRC biopsies, there are tumor specific immune cells, showing that tumor mutations in GI-Cancers are “immunogenic” and able to be seen by the immune system – the immune system just needs some help to see them better & some help to do its job!
  4. There have been preliminary indications of clinical efficacy in a MSS-CRC patient receiving personalized immune cell therapy presented at the CRI-CIMT-EATI-AACR Immunotherapy conference last Fall, once again showing the potential translation of personalized immunotherapies into CRC clinical efficacy.

The Greatest Research Project of My Entire Life: Going for the Cure

There are no guarantees in life and especially in cutting edge science no one can tell the future, but once again you heard me right, we are setting up this data to facilitate hopefully going for a cure.

I couldn’t ask for a better team of scientists working on my case.  The lead immunologist is world-renowned in his field and the rest of the scientists are also all amazing.  Human Longevity’s co-founder is Craig Venter who was instrumental in the successful decoding of the human genome (!)  It gives me goosebumps to think that this is the group working on my case.

Why am I talking about this now?  A couple of reasons – Human Longevity recently publicly announced they are working on therapeutic cancer vaccine research and a public scientific talk on their methodology (with me giving public comments immediately afterwards as a “patient-scientist” they are working with) occurred earlier today at the “Moores Cancer Center 12th Industry/Academia Translational Oncology Symposium”.

The details of the personalized therapy being contemplated will have to wait for another future post – something to look forward to (I am! 🙂 ).  As of right now, suffice it to say – I am beyond excited at the possibilities and being a part of such cutting edge research! As I said, not only for myself but also for the potential to help the rest of the CRC community through the research being done on my case!

Pushing New Doors Open

One Door Closes and Another One Appears

Although generating data to facilitate an eventual attempt at a cure is the main focus of this update post – another focus is a more general concept.  That of – “One door closes and another one appears”.  Unfortunately in cancer life, you are hit with bad news.  It can be medical, it can be in your personal life… but at the root, various bad things hit you that one way or another were caused by the cancer.  It just happens and when it does… you learn to just roll with the punches… regroup and reload.

I think truly valuing every minute you are on this Earth and rolling with the punches are the two HUGE life lessons that I and many Stage IV cancer patients learn. These are good life lessons.  The reason behind being taught them is bad but learning them is a good benefit – because I think both do enrich and help you in Life.

When melanoma closed doors on standard clinical trials for me I hit a low, days later another door appeared with the arrival of a Scientific Guardian Angel setting off a chain of events leading to the current personalized immunotherapy project.  Something more cutting edge & better than the trial I had been blocked from joining!  When I attempted to get into the cutting edge NIH TIL personalized immunotherapy clinical trial last Fall and that door was closed to me I hit another low, days later another door appeared when I met a very important new clinical collaborator who has been key to the current personalized immunotherapy research project.

New doors of some kind (physical, mental, emotional, or spiritual) can sometimes appear in life when one closes on you. In both cases above, I saw a new door appear and I grabbed that door and tried to push it open as hard as I could.  Sometimes you need to do that, doors may appear but not necessarily already open. I am incredibly grateful for the scientific opportunities I have been given.

But science aside, to me that is the essence of Hope.  Believing in your heart that no matter how bad things look at a given moment – there may be a new door, of some type, appearing before you, ready to be opened.  Maybe not a door you specifically asked for or ever envisioned (I never envisioned my current project!) but a door leading to something positive none the less.  We can’t chose the exact path that Life leads us, and Life will include both good and bad events – but the bad events pass and some sort of good will find a way to return.

I have Faith in that.  I have Hope. I am firmly Terminally Optimistic.


26 Comments on “Scientific Guardian Angels Appear: Vol. 2

  1. Tom, inspiring as ever and thank you so much for helping to keep us terminally optimistic too. Really looking forward to seeing where these new openings take you, us and the CRC community.

    Our warmest wishes,
    Jim & Hayley

    Liked by 1 person

  2. Oh, Tom, this is SO EXCITING!!!!! YOU are the Guardian Angel for all of us, honey! Your unbelievable dedication, your passion, your integrity, your whole SELF is so full of LIGHT!!! What a wonderful human being you are!!! Even just knowing that you are out there, fighting, researching, surviving (and running 10k!!!) makes me smile, makes me happy! And now this fantastic news about Pentatope results in mice – I am so with you in your belief in it and personalized approach! May Universe Bless your path with the speedy clinical trial miraculously achievable within a year! Huge hugs, congratulations and love your way, sweetheart! Vilca/Stella

    Liked by 1 person

  3. I was up early to see Jim off on the college group mission trip and was able to start my early day with great excitement reading your post! So glad to receive your much anticipated post!

    My list of favorite posts just keeps growing. 🙂

    Karin Sent from my iPhone


    Liked by 1 person

  4. Tom, not just awesome medical news, but I am most impressed by your personal journey. I’ve known you a very long time and am truly convinced you have become one of those rare individuals who straddles the scientific/spiritual fence with great intelligence and grace. Very proud to know you.

    Liked by 1 person

  5. Wow – I am so incredibly excited! I could barely contain myself as I read this.
    And, of course, I LOVED this line too, that you got…: Something more cutting edge & better than the trial I had been blocked from joining!

    Liked by 1 person

  6. Tom, this is BIG! I believe God opens EXACTLY the right doors at PRECISELY the right moment. THANK YOU for recognizing these opportunities and chasing the dream of a CURE for cancer! Best wishes for you and all of us.

    Liked by 1 person

  7. Thank you Tom, just home from hospital with my fanny pack, just wonderful to have stumbled upon your blog. Am also terminally optomistic that a cure is just around the corner and out there for us if not there already.

    Liked by 1 person

  8. Tom, this is so exciting. I am so happy for you. Thanks for sharing it and giving the rest of us this boost.

    Liked by 1 person

  9. Fantastic news and they are truly on the right track….but in all honesty it will probably be years before any of this filters down to us stage 4 sufferers and it will be too late for the majority of us. Still great great news!


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  19. Hello everyone… though my case is different (TC) but I believe it might be worth writing in some observations. I’d read about the potential benefits of fasting roughly half year ago when I was diagnosed with testicular cancer. Brought it up to my oncologist who advised me not to do such a thing, which I of course complied to. Until my gut literally pushed me the other way around on its own:

    During my first line BEP treatment I clearly started feeling that food and chemo just didn’t mix well for me. Since it was ambulatory care, I still ate in the evenings after going home, though. Had plenty of nausea during those times.

    But then it turned out I had to go for second-line TIP (which is given as in-patient during 6-day period), and it’s not as practical to get food during the off-hours, so I eventually just went on eating less and less food… and I noticed the less I ate the easier I seemed to handle the side effects of chemo. Second cycle I had maybe a couple sandwiches through the whole week, and the experience was much easier comparable to the first cycle where I sometimes was pressured to having some meals. Right now I’m finishing the third cycle, and had nothing but a couple of juice boxes towards the end of the week. The first 3-4 days in this cycle, I was simply not hungry and chemo was much breezier comparable to the earlier cycles.

    Also, I should add I was overweight to begin with (110 pounds) with otherwise good health markers (minus the cancer thing). I should also point out that my fasting process developed quite spontaneously. At this point I just lose interest in food from the first day of chemo – simply because the chemical smells pervading the oncology ward seem to make me puke whenever I have *anything* in my stomach, despite the copious amounts of anti-emetics given to me.

    So by trial and error, this is what seems to work for me: chemo on empty stomach is just much easier for my body, with no signs of hunger or even interest in food until days 3-4 into chemo… even then, I only feel like munching/drinking on very tiny amounts of whatever particular snack seems appealing at the time. This is clearly not in line with the procedures outlined by Prof. Longo… but it seems to be doing the trick for me. Which, I believe, suggests it may be harder than anticipated to create exact, universal timelines for fasting during chemo.

    Hope this information is somewhat useful to anyone out there trying to piece out the chemo/fasting puzzle. I agree 100% with the position of the blog author: proceed with caution, pay close attention to your body and your doctors. However, judging from what I’ve read here and what I’ve been experiencing, it looks there is some substance to the differential stress resistance/fasting theories.


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