Working to Save My Life (and Ending Up With a Full Hour Interview on The Charlie Rose Show!)

Wow.

What an incredible week it has been… I am tearing up now just thinking about it as I fly home from New York City (NYC) to my home and my family in San Diego.

A lot of people have been wondering how I have been doing since the last medical update (In Case of Emergency Break Glass).  It is hard to believe that it has been almost a month since that post!

In Short: I haven’t been doing too great – but I am doing a lot better than I was!!

Boy That Escalated Quickly

It is interesting… yes the new, explosive disease in my liver was a surprise to me and my medical team about a month ago via CT-scan.  But symptoms started up basically at the exact same time the scan was received, so I would have known something serious was wrong within days of the scan anyway, even without it.  My appetite plunged to zero, I started to vomit every day, I felt narcoleptic level fatigue, my pain intensified.

If you remember – the same day I discussed the CT-scan results with my oncologist, I started immediately on FOLFIRI chemo + Avastin + within a few days off-label Maraviroc.  Why did I immediately throw the kitchen sink at my liver tumors including an off-label AIDS-drug that may be a CRC immunotherapy?  Frankly because my life was threatened.  Near-term threatened. That week was very rough.  I was very sick and frankly I was starting to get nervous…

And then about a week later?  All the symptoms (except the pain) got better!  A lot better.  We don’t know yet if my liver disease is responding to the treatment – but based upon those clinical signs, I am optimistic that it is. I should start getting a series of CEA tests soon and a CT-scan in April but until then I am optimistic and very thankful to be back in the world of the living instead of the world of the largely bedridden.  The pain is still there… but it is being controlled with pain medications from the excellent palliative care team at my Cancer Center.

Once the Debilitating Symptoms Receded I Got to Work

The key problem I have is my liver disease.  All my disease everywhere else is slow growing and casual.  I have had cancer for many years now after all… The liver disease is fast growing and aggressive.  I won’t die from my lung tumors anytime soon.  My liver disease? Well… I need to be very aggressive – to match its aggressiveness!

Hopefully it responds to chemo but what if it doesn’t?  I am feeling a lot better (potentially due to the chemo working) but what if that is a false signal?  When you are dealing with literally life and death – I don’t know about you but I’m not a fan of playing Russian roulette – I want to get that liver disease gun away from my forehead ASAP thank you very much!

HAI Pump

There is a very specialized type of treatment for liver disease in colorectal cancer (CRC) called a HAI Pump.  What is it?  It is an implantable pump that feeds medications directly into the liver.  Technically you can load it with anything but the most common drug loaded into it for CRC treatment is FUDR (Floxuridine).  FUDR is a specialized form of chemotherapy that is very quickly metabolized in the liver before it reaches the bloodstream.  So… if it is pumped directly into the liver it is a perfect form of liver-directed chemotherapy. This is because very high concentrations of FUDR can be pumped into liver tumor cells, aggresively killing them and never reach anywhere else in the body.  If your life-threatening disease is liver tumors – it is a wonderful way to aggressively hit those tumors as hard as possible. It can work miracles in some patients.  The downside: it requires an invasive surgery (with those risks) and a 4-5 day stay in the hospital.

HAI Pump

New York Here I Come

My cancer center offers the HAI pump but it is a major decision/undertaking and I wanted to speak to the doctor I consider the #1 HAI pump oncologist in the world, Dr. Nancy Kemeny.  The problem is: She is at the famous Memorial Sloan-Kettering Cancer Center in New York City.  I live in San Diego.  The solution: When your life is on the line… New York City here I come!

I quickly set up a medical consult with her.   It took some convincing… HAI pumps are not often used for patients with wide-spread disease like I have.  BUT… remember my disease is kind of weird.  VERY slow growing everywhere in my body – except for the liver.  Five years’ worth of CT-scans and medical records later – the point was proven. Nowhere else in my body looks like it wants to kill me anytime soon – except for the liver.  Combating it hard & specifically with liver-directed therapy could make a big difference on my prognosis.  Since my personalized immunotherapy project and immunotherapy trial possibilities continue – getting my liver disease under control & prognosis improved could have huge impacts on my life.  Literally!

My medical consult went fantastically.  She is as smart and an expert in this field as I have heard from many people.  Medically I am so glad I made the flight!  Under her advice (which my San Diego oncologist agrees with) we’re going to plan for the worst (while of course hoping for the best!) and we have switched up my chemotherapy to facilitate a HAI pump surgery if it is needed.  My FOLFIRI chemo & Maraviroc continue but Avastin (bevacizumab) is out (you can’t do surgeries within 6 weeks of avastin) and Erbitux (cetuximab) is in.  In 6 weeks we’ll get a CT-scan of my liver to see if the pump is needed – and that will lineup with surgical ability to implant the pump via the Avastin washout period.

I remain terminally optimistic with this plan!  It plans for the future in an aggressive and logical fashion – hoping that my liver responds to the current treatment but avoiding an “oh crap!” life-threatening moment if it doesn’t! And once the liver is back under control… additional immunotherapies (Maraviroc is potentially an immunotherapy) here I come!

OK OK… You had a great medical appointment in NYC – Where the heck did The Charlie Rose Show come from?  An hour long interview???

My first night in NYC I received an amazing email.  It was from the Charlie Rose Show  asking me if it would be possible to interview me while I was in NYC anyways!

My jaw dropped.  I love the Charlie Rose Show! It is a thoughtful, intelligent interview program where guests can discuss their areas of expertise in a thoughtful, intelligent fashion!  I considered it the perfect forum for me to discuss topics that were most important to me: the exciting breakthroughs happening in oncology right now (from both the scientist and patient perspective!) as well as some of my clinical trial advocacy projects such as this blog and the COLONTOWN CLINICTo a nationwide audience. I was shaking I was so taken aback.  I said yes immediately!

Taping the show was an activist’s dream come true! I was nervous ahead of the taping but Katie Couric (she was guest hosting) was wonderful at making me and the other three guests so comfortable that once we were on set – my nervousness melted away.  The show’s format is a “discussion around a table” and when the cameras started rolling, that is exactly what it felt like.  Just a simple discussion.  It was an hour long show featuring me and three other wonderful guests discussing where cancer research and treatment stands today and how clinical trials fit into this.  It was a wide ranging discussion – including my personal story in detail, my advocacy, early on-set CRC, clinical trials and immunotherapy science in layperson terms wrapped in HOPE (these should all sound familiar to long time readers of this blog!) – all of my advocacy, activism and scientific passions were covered!

I said it once and I’ll say it again – it was a dream come true!

The other guests were all excellent, the discussion was engaging (the hour flew by – it felt like 15 minutes to me) – and I truly can’t say enough good things about Katie Couric.  Both on and off-set it was clear the incredible passion she feels for cancer & CRC advocacy and she is whip smart – she knew her cancer facts and information to an incredibly deep level!

2017-03_Charlie Rose Show_Group Shot on Set

Aftermath

I walked back to the hotel after the show in utter disbelief of what had just happened.  3 years ago I was an introverted simple scientist.  Tonight I had been interviewed in depth before a nationwide audience on topics I am passionate about.  I was overcome with the sheer magnitude of it all.  I was exhausted.  I was emotional. (Kids don’t do this at home): I had intentionally not taken my pain medications that afternoon in order to be clear-headed for the interview…  I was in serious pain. I started to cry.  Luckily I was walking down a NYC sidewalk where people don’t bat an eyelash at something so minor as a dressed up grown man weeping as he slowly walked a couple blocks into the luxury hotel the show booked for me.

I crawled into bed and took my pain pills ASAP.  The show aired that night so I quickly put out the word on social media.  I enjoyed a giant steak and mashed potatoes room service meal in bed – as the pain pills kicked in and I prepared to watch the show on the hotel TV.  The show began to air – it turned out incredibly well. I teared up some more (the pain was gone but the emotions and exhaustion remained…)

It is now available to watch streaming online at this link 

So that is how I ended up with an one hour interview on The Charlie Rose Show.  All I wanted was a doctor’s appointment to try to save my life.  I got that. And then so much more… It’s truly a wonderful life.

To Life!

-Tom

2017-03_Charlie Rose Show_Julia

26 Comments on “Working to Save My Life (and Ending Up With a Full Hour Interview on The Charlie Rose Show!)

  1. Hi Tom,

    I watched you on Charlie Rose earlier today. You are incredibly courageous, while sharing your experience as a scientist/cancer patient. Thank you for doing so

    I just survived a year plus of breast cancer treatment. Additionally, I have had ulcerative colitis for 40 yrs., and, needless to say, am at risk for colon cancer. The chemotherapy, and possibly other drug therapies, adversely affected my colon. I am considering fusions of a more recent drug therapy in addition to what I take for maintenance drugs. I am starting work with a research study focused on breast cancer survivorship next week. I want to do everything I can to prevent a recurrence.

    After the Charlie Rose Show, I signed up for your blog, phoned UCSF (since I live in San Francisco) to see if they have any research studies for prevention of colon cancer for people at high risk. I will gladly be a participant!

    Good luck to you in your continued fight. Perseverance is everything!

    From one warrior to another,

    JM

    Liked by 1 person

  2. Just watched the show online…..what a fantastic speaker you are Tom! I think everyone on the panel was blown away by your knowledge and patient advocacy efforts! As a melanoma patient (stage 3) living in San Diego County and a caregiver to my husband who also has melanoma (stage 4), I have been reading your blog for a while and really appreciate the cancer info you share along with your personal experiences as a patient. Good luck with your own cancer “journey,” and thank you SO much for all you do for ALL of us battling cancer.

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  3. Tom,

    Katie’s story showed me what amazing person she is. She drew out so much from each of you. I believe our supporters have it the hardest sometimes: we can do something, admittedly not fun, but they can feel helpless. My wife had to stop me talking about the show. The pump looks so much better than chemoembolization. The show was perfect. Stay ahead of that pain.

    Bill

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  4. Yes, WOW! What a week, what a life! Thanks for this post, I’ve been itching to hear the details and am so happy that things are getting better for you. It’s wonderful that you were able to share your story and your knowledge to help even more people. Keep on keeping on …. You truly are amazing! 🙂

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  5. Tom, you are such an amazing person. In the midst of your own, crisis you are out advocating foe the rest of the cancer world. Thank you for sharing. Your words often make me feel like I am actually pretty normal or at least not the only one with the feelings I have. Hoping those CEA numbers are coming down and the scan shows great response!

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  6. Bravo! I’m happy for you personally, and also for all of the patients who will now seek out clinical trials because of your advocacy. Well done!

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  7. Tom,

    You ROCK!

    There are no words to adequately express the deep appreciation those in the colon cancer community, especially the Stage IV folks, feel for you. Anyone who says one person can’t make a difference needs to see you in action.

    Get some much-deserved rest and know that all over the world, people are rooting for you to get better and carry on this important work.

    Thank you for all that you do!!!

    Lee Asbell

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  8. Dear Tom,

    Tom,

    Dick Bloch (the “R” in H&R, surname spelled correctly) liked to quote a man he knew who’d survived 5 different primaries, “you can live about three weeks without food, three days without water, three minutes without air, and about 3 seconds without hope.” Dick was sent home to die in 1978. He fired that guy. Didn’t like his attitude. He & his wife spent the next 30 some years bringing hope to others. Annette still works at it as their foundation builds survivor parks, matches patients, and sends out free copies of the books they wrote (and so many other things). Dick died, as do we all. His great heart failed him (in his 80’s). Hope. You’re its poster child. Dick could be a hard man, you don’t build a company like that from nothing otherwise. Dick would have loved you at first sight.

    I was deeply skeptical of “The Moon Shot.” I’ve been living with clear cell renal cancer for 23 years. I’m fortunate to have a really mean immune system, and doctors who treat people, not patients. The synergy between chemo and immunotherapies gave me a long remission. The approach was controversial as chemotherapies are extremely ineffective with kidney cancer. There are only two that have a measurable effect, and it’s insignificant. The theory was 5-fu & interferon would work synergistically. It was a failed trial and long forgotten trial, but it didn’t fail me. I always reminded people of this when they were considering a clinical trial. In the last couple years I had to quit cancer counseling. I’d become too coldly empirical. It’s a great fault in medicine and western science in general. It made me lose track of hope. “I failed IL2 in January 2012” was the wrong way of understanding it. I responded, I just wasn’t cured. I failed a surgery called metastatectomy because my surgeon couldn’t get at every remaining tumor. Wrong again. Yes, I wasn’t cured by a surgery intended to cure me, but shortly afterwards my body killed all visible signs of what was left and I became stronger at 57 than I was at 37 when I was first diagnosed. That remission was only a few wonderful months, but the effects are still with me. I should be the most hope-filled 60 year old man alive.

    What happened to me? I’ve heard about so many breakthroughs and promises I let them pass straight through my ears, untouched by my mind. Then I heard the former vice-president describe his program. I deeply admire Mr. Biden because he gave the most amazing interview I’ve ever seen. Well, the most amazing thing I’ve ever seen on TV. It was at the beginning of the Colbert show, before it became bogged down in polemics. He talked about the death of his wife and daughter, the survival of his sons terribly broken bodies, and the recent death of his eldest son from brain cancer (GBM). He was so full of hope I caught it again. As he spoke he became completely focused on people less fortunate than him. Yes, he suffered and still does every day, but he’s surrounded by people who hold him up, sort of like Katie did you the other day. He looked out into the audience and said something like “there are people out there who’ve suffered worse things than I have, but without any support. They get up and get out of bed every day. I’m in awe of them.”

    I’ve had many ideas in my life. Some even became beliefs. I’ve none left, just a deep and abiding faith in love (my understanding of what people name God). I’d quit Colbert because the show changed and I’ve no interest in things I can’t change, but when Biden returned I had to watch. He was so humbly grateful. He asked a hostile congress for $1 billion dollars to fund his Moon Shot. They gave him $1.8 and named it after his dead son. He said, “That’s the congress I know.” It makes me proud to be a citizen of the United States of America.

    My youngest son (born the year of my cancer) while quite young is very skilled. He’s a born teacher, yet wasn’t able to explain Machine Learning and Artificial Intelligence to me until Thursday. He “stopped by” on his way to Dresden for an Imbedded Systems trade show. Kansas City is many things, on the way to Germany not among. Biden’s approach came fully alive to me. He got the VA to agree to do genomes and full treatment descriptions with their outcomes on all cancer patients. He got the single payer systems in Europe to agree to do and share the same. IBM offered Watson to do the thinking. The data sets my son works with in industrial applications are so large even a computer can’t sort through them. This is the same problem with the Moon Shot. But the mathematician/computer scientists who design AI let the computers find anomalies which form patterns of varying strengths and consistencies. They call this form of computing “neural net” quite appropriately. We do a similar, though vastly more complex form of it with our actual neurons. We’re not designed to work at the speed of light. Computers are. We’ve no use for petabytes of information, computers don’t mind it a bit.

    Hope. One day that data set will reach a critical mass in Watson and answers will suddenly come fast and furious. My son explained his work referring to Jeopardy. It took Watson something like 18 to 24 months to “learn” how to play. That process can be understood by anyone who’s seen a blackboard covered with esoteric mathematical symbols ending in an “equal” sign. It may take a long time to figure out the formula, but once you’ve got it, all a person needs to do is enter a few variables and read the answer. You don’t even need to know there is a formula. Once Watson had the right model, it could beat the best players in real time. I used to watch Jeopardy and was amazed. The amount of data needed to play it, however, is trivial by comparison to the moon shot. I’m sad our really marvelous medical system isn’t contributing to the database. It will take a lot of information, but cures are as inevitable as the dawn which just crossed my horizon. Sadly it only crosses my vision once every day, for the earth’s spin is only 1,04o miles per hour. I’m in a hurry. Not for me; I’ve many damaged things inside and not a single complaint. I’ve lived so well that sorrows, pain & happy days have coalesced into what I understand to be true joy. I simply can’t wait for whatever each day brings to me. But I’ve seen far too many die without hope. It’s no way to die. It’s a very premature death. Many of us who’ve faced death and lived see “life” in a new way. You describe this far better than I but, whenever I walk down a street I see so are many who are the living dead. They complain and worry about things they can’t change.

    I hate cancer. I call them mutant zombies, for they’ve betrayed my body. I kill them without a second’s thought.

    A long ramble? Not even close. I’ve been thinking about cancer for 23 years…

    Liked by 1 person

    • A tremendous comment Bill, thank you so much for sharing it here! I can’t think of a written reply that will do it justice, so I’ll just stick with “thank you” To Life! -Tom

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  9. As a ten year colon cancer survivor with lung mets, I was most grateful to be introduced to your website by Dr. Allyson Ocean at Weil Cornell in NYC. I am at a point where I have to consider a trial to get my lung mets back to being more stable. The Katie Couric program was especially informative and helpful. You should be most poud of this program and all your work on behalf of cancer patients. I will be following your blog and your Colontown Clinic discussions and Fight Colorectal Cancer research posts. Best of luck with your new treatment and many blessings to your family as well.

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    • Dear Ikuklis, Thank you for writing your comment! As I briefly mentioned during the program, I think the COLONTOWN CLINIC is the single best source of CRC clinical trial help on the web (obviously as a co-founder I am highly biased) but I urge you to check it out. To start the membership process, go to http://www.colontown.org and follow the instructions. This is for membership to the parent organization – later in that process, ask to join the COLONTOWN CLINIC for clinical trial help. I hope to see you there! All the best, -Tom

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  10. Tom,

    After reading today’s post and discovering you flew to NYC for a consult and then were surprised to receive an invite to the Charlie Rose Show discussion, led by Katie Couric is earthshaking. So glad you were able to get your message out to millions, from coast to coast. What a privilege! Your many sacrifices and setbacks were validated many times over!

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  11. Hi Tom,
    You were phenomenal, even more so now that we all know you were in pain. How fantastic that one great thing led to another, and you continue to take us all along on this great adventure! You have so many people rooting for you. Thank you for your unwavering commitment to advocacy, it helps us all.

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  12. I’ve been reading your blog since my own Stage III diagnosis almost two years ago. Wishing you all the best, always.

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  13. I sought out your blog when I saw you talking about it on the Charlie Rose Show. I’m so impressed with your courage & generosity in sharing your story in your blog & in this discussion with Katie on the show. Thank you.

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  14. Hi,
    Just watched your Charlie Rose presentation, very informative. I was Dx with stage 4 adenocarcinoma last July. Have been working my way thru the system to find more advanced treatment besides Chemo for life..You are an inspiration to me and many others. Thank You

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  15. hi tom, i saw you on charlie rose the other night and was so impressed i scrambled to write down the info to join your blog .. i have prostate cancer and am in the final month of an immunotherapy study that began last year..exciting stuff! as others have said you are truly a warrior and inspiration for the fight..i wish you life..as much as you need THANK YOU!

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  16. Thank you for the update and for all you do. I was so happy to read your post. As many others, I have been thinking of you and hoping that you were feeling better. I will pray that your next scans show that no HAI pump is needed, but so glad you have a solid plan as back up. You help so many people, Thank you.

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  17. Thank you so much for all that you share with us. It certainly gives me the strength to carry on with Palliative Chemo. I hate that word Palliative, so I call it maintenance Chemo. Thanks again – Lisa Wyeth NZ

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  18. Dear Tom,

    I learned about you on the Charlie Rose show via Twitter. I would like to direct you to a fantastic website that talks about all these treatments (Maraviroc, too) repurposed to be used in cancer as well. It is the most intelligent cancer treatment website I have ever come across (I am looking at several, on a daily basis myself). It uniquely combines conventional therapies with anything that comes to the attention of the host of the website. He is a brilliant PhD physicist who sadly lost his wife to cancer last year. Here is: http://www.cancertreatmentsresearch.com/ Hope you’ll look at it!

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  19. Sorry, I didn’t mean to insult you by lumping you with “researchers”. I am a researcher myself but many on the site are “researchers”, made by necessity. Nevertheless, lots of thoughtful and smart people there.

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  20. Pingback: Chemo Through the Years (Hope is Very Much Alive!) | AdventuresInLivingTerminallyOptimistic

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