An Ironic Cancer Life

“Ironic” – as shown in the above pictured definition of “Ironic” from the Urban Dictionary – is a word that is often misused in contemporary life but when it comes to my “Cancer Life”, I think it is perfect.  I do not think my Cancer Life is just “coincidental”…. And I certainly do NOT think my cancer life is “tragic”!  But has it been, from the very beginning, a series of events that have been a “complete reverse (and practical mockery) of what was expected”?  That, I think I can agree with!

But before going into that, first of all (and connected to my ironic Cancer Life) a medical plans update I know so many have been waiting for!

Medical Plans (as of today!)

As of today, I have experimental planes lined up on the taxi-way, not just in theory – but logistically lined up with what I believe are all components in place waiting for a “go signal” based upon medical ability but… I need to be medically stabilized first.  My liver is truly a serious cause of concern.  It is covered in tumors & it does not tolerate even a small break in treatment without growing into a situation where I have liver disease symptoms.  In other words, while my liver is in this state, I literally do not have the time to explore non-fast-acting activity experimental meds (unless they are done on top of chemo/standard of care) – I am beholden to standard of care first…

There is a fantastic, FDA-approved technology called “Selective Internal Radiation Therapy (SIRT)” or in a more general way, also called “radioembolization”.  I won’t go through all of the details (click on the link above for a good Wikipedia overview) but in basic-terms: it involves the injection of radioactive (Yttrium-90 (Y90)) microspheres in such a way that they get safely trapped within the liver, without threatening the rest of the body with radioactivity.  While there – it is actually quite medically elegant – the radioactive microsphere (not that much larger than red blood cells) selectively target liver tumors over normal liver tissue and thus the radioactivity is designed to selectively kill the liver tumors currently threatening my Life. This is the way to attack these life-threatening tumors as hard as possible, as quickly as medically possible.  In many patients, SIRT can produce dramatic therapeutic results, very quickly.

SIRT Cartoon

The procedure is just a day procedure done by an “Interventional Radiologist” (the same one who did my lung radiofrequency ablations almost two years ago!).  The main issue is that they can only do half of the liver at a time.  So I am set up to do the first half at the beginning of June and the second half as soon as it is medically safe to do so thereafter…

So then the big question becomes: How do I keep myself medically stable between now (& in-between) the two SIRT procedures in order to keep the disease under control enough for the procedures to be done/the liver tumors attacked? As much as is medically allowed, chemotherapy will be used – as much dosing as possible. Immunotherapy add-ons will be done on top of chemo, as much as medically possible.  There is a decent chance this will be successful but far from guaranteed… Quite simply there is nothing that is faster acting than cytotoxic chemotherapy and right now the seriousness of my disease requires agents that are ~immediately acting, like chemo is on chemo-sensitive tumors.

For my pain causing lymph node back tumors, I have switched to a different pain medication that is doing a pretty good job of controlling my back pain for now, although I do require a lot of bed rest.  I now have “SBRT radiosurgery” approved for the pain causing tumor if absolutely needed for quality of life but I am needing to make sure that the potential timing of any SBRT for the back pain doesn’t prevent SIRT on my liver from being done as quickly as possible! It is indeed a very complicated 2-front war…

I am truly trying to thread the treatment needle right now, my life depends on it…

Theading the Needle

One thing that is indeed ironic – and something I now have full appreciation of – is that all of my cutting edge planning, knowledge & resources aside, no matter how much I do… at the end of the day, I am at the bidding of the cancer beast.  That is something that I under-appreciated as I enjoyed a quite slow growing & indolent disease for so many years.  The bidding of my beast is now saying that my life is in the hands of standard of care therapy (while my experimental treatment planes wait on the taxiway) until my liver is safe!  But once that is done – these plans are all set to go!

Speaking of Ironies

My Cancer Life has indeed been an almost continuous list of ironies for years now… Something that I can’t help but think about on multiple levels, mental, emotional and spiritual.  Is it all coincidence (making the use of the word “irony” inaccurate)?  I don’t know… I often ponder this.  But laying out what has happened over the past 5 years, both good & bad, certainly does lay the case that it has been a series of events that have been a “complete reverse (and practical mockery) of what was expected”!

Where to start?  How about the beginning…

My mother died of surprise diagnosis pancreatic cancer when she was 55. To be safe… I planned on starting cancer surveillance 15-years prior when I was 40.  I was ironically metastatic with CRC already when I was 39…  I was then surprise diagnosed with early-onset CRC on the exact same day that I reached the pinnacle of my cancer-fighting professional career… the ASCO-2012 presentation of the Phase 1 Clinical Trial results of “LDK378” (now named ceretinib/Zykadia) a lung cancer drug which I had co-invented (and by chance had been the first chemist to synthesize in the lab).

But the ironies continued into my scientist-patient-activist life!  As probably the single biggest clinical-trial advocate in the CRC world (and one of the biggest in the cancer world)… ironically, I have never done a clinical trial and I won’t be doing one in the foreseeable future (experimental meds in my foreseeable future plans will have to be supplied to me via “compassionate use” pathways) – through a continuous series of ironic twists & turns in my ironic journey!

Here are just the major twist & turns, I’ll leave out the minor ones!

First of all… my immunotherapy clinical trial attempt #1 was lined up in 2015.  But… then I was surprise diagnosed with Stage 1 melanoma just two weeks before the trial start – ironically stopping this clinical trial advocate from that trial attempt (and most others) in their tracks!  As an immunotherapy trial attempt #2, I first attempted to enter the NIH TIL trial in 2015.  I was denied… my tumors were too small. They were continuously too small until they suddenly exploded on me in 2017, at which point the trial was deemed not possible (I applied again) because my disease was now too aggressive – although ironically I certainly now had tumors big enough!

On the side… I have been blessed to have the incredible resources of: Craig Venter, Human Longevity, incredible collaborators at The La Jolla Institute of Allergy & Immunology/UCSD working feverishly on a neo-antigen immunotherapy strategy to combat my cancer.  One of the results of their efforts?  The identification of a mutation in my tumors (my APC frameshift mutation) that my immune system recognizes for attack! It is truly an almost “perfect” Achilles heel for personalized immunotherapy strategies! As both the founder and a driver mutation, it is probably in ~all of my cancer cells, a mutation that is essential for my cancer “to be cancer” & if it can be attacked, it gives me a theoretical chance at a cure.  For a mixture of logistical and scientific reasons, the translation of this scientific discovery to a therapeutic stage was delayed… then my disease suddenly took off…

Finally… I was lined up for immunotherapy clinical trial #3 (the oncolytic virus + PD1 inhibitor trial I have written about extensively), I was very excited about it! A trial based upon great science that also allowed me to join it regardless of my melanoma!  But… In the pre-trial CT-scan last February, I found out within days of the trial’s start that my disease had unexpectedly taken off into an aggressive new form – my liver covered in tumors, while I had waited for the trial to open for me. Ironically, my long indolent disease had switched on when I least expected it.  The trial (and all other near-term trial possibilities) were immediately canceled…

So ironically, the ultimate CRC Clinical Trial advocate is unlikely to ever do a clinical trial…  I need to do experimental therapies via other mechanisms, including off-label and compassionate use – which I started to do in February.

its_a_wonderful_life_Happy George

It’s a Wonderful Life

BUT – the ironies in my Cancer Life have NOT been all negative!  FAR from it!  While all of that was going on… ALSO many other wonderful things have been happening! Although yes, in their own ways they certainly were still ironic as the “complete reverse of what was expected”!

My disease has brought me to the most fulfilling and impactful LIFE I could ever have imagined!! Only BECAUSE of my disease – I have been able to directly help at least tens of thousands of patients/caregivers/families in >150 countries around the world!!  It AMAZES me to think about & witness this daily!  I had been completely content being a very introverted scientist until my cancer hit… indeed my wife & I had actively looked into moving to Mendocino, California (where this Blog’s tree photo was taken) right before my diagnosis in order to lead the most introverted life imaginable.  It is truly the geographical place in the world where my heart is most aligned…  My diagnosis, ended all those plans on the spot. So much for leading the most introverted life possible!  From my current vantage point, looking back, if that isn’t ironic, I don’t know what is.

Beyond this blog… between the COLONTOWN CLINIC and my novel methodology to curate a PATIENT-VIEWPOINT-FOCUSED MSS-CRC clinical trial finder list (http://colorectalmsstrials.org/) – I believe I have changed the CRC world and since both efforts are not CRC-dependent, I believe they both have the potential to take off in other types of cancer and have the possibility of impacting additional swaths of the cancer world!

Ironically, all of this happened ONLY because a very introverted oncology drug discovery scientist, but one with an intrinsic altruistic & activist personality, was surprise diagnosed with cancer…

If I needed to get cancer… I am beyond thrilled that I could use that as a way to help such an incredibly large number of people around the world.  What more could I ask for in Life? I am beyond thrilled that I could use that as a way to change the oncology world for the better, for so many people.

Overall – the last five years of my “Cancer Life” have been a continuous list of ironies… both negative and positive… Yes, it has been an ironic Cancer Life indeed!  But the key word in that sentence is LIFE.  And in many ways it has been a WONDERFUL LIFE indeed…

Thank you so much for joining me so far on this cancer journey – through all of its ironic twists & turns – both so far and continuing in the future… The people I have met along the way have made every single day fulfilling, exciting and incredible…  As I wait for the pending SIRT procedure to literally save my Life, I will continue to do whatever I can to make others’ Lives better – my family’s, my friends’ and patients/caregivers out there in need of help… There is nothing ironic about that.

TO LIFE!

-Tom

30 Comments on “An Ironic Cancer Life

  1. Love this post, Tom. You are amazing and the Asbell family is in your debt. Rooting for you and hope Y90 brings much success soon.

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  2. Life is so strange
    Destination unknown
    When you don’t know
    Your destination
    Something could change
    It’s unknown
    And then you won’t know
    Destination unknown

    Missing Persons – Destination Unknown Lyrics

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  3. Thank you so much for sharing your experience and expertise with your fellow patients and families. You have been a great help and inspiration to my entire family.

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  4. You are an amazing man. Thank you. My mother also died of pancreatic cancer, only symptom was weight loss. I had no classic symptoms of CRC and discovered because of unintended gradual weight loss. A CT of my pancreas found a huge tumor in my colon. My colonoscopy 7 years earlier was squeaky clean. An additional CT showed mets in my lungs and liver. Surprise, surprise!

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  5. WOW, a gymungus, ginormous, colossal thank you for everything you do and write 🙂

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  6. Radioactive isotope FOR THE WIN! You’re simply amazing. I believe one day we’ll understand exactly why each of those twists and turns were allowed to happen. I’m thankful that you’ve done SO MUCH with the hand you’ve been dealt. You’re an inspiration to us all. ❤

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  7. Oh Tom this is truly ironic and to LIFE well lived each and everyday !

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  8. You have made such a difference for so many. We are praying hard. Stay safe!

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  9. Tom, I hold few people up as heroes in my life. Every one of them has a commonality. They’re full of life, even in the face of death. I read all this and was struck by fact you’re filled with gratitude and joy at all you’ve been given in a situation most people would be devastated by all they’ve lost. A man (also named Tom) went to Mayo from KC as a last-ditch try to clear his colon out of his liver. While they had nothing to offer Tom (it was a time when little could even be tried) he brought me to tears with laughter as he described the SPAM museum nearby (is Mayo really better with a little SPAM?). Tom was at every one of his son’s baseball practices that summer; Tommy wasn’t a great athlete but his dad (and I) were proud of every at-bat and with every play he was involved in. Such a fun summer! Tommy wanted to see the Cubs, and the next weekend they were in Chicago. As we drove to the game the week after his dad died, Tommy asked me to call him “Tom” now on. For some reason I’ll never understand none of the other coaches were willing to do that. My friend Tom didn’t live to see 50, but he lived far more than most every other person I’ve ever met. His surgeon told him (a couple of years before he was diagnosed) that there wasn’t anything wrong his appendix; must have just been a ‘passing thing.’ Tom’s attitude toward the doctor was “everyone makes mistakes” and he treated him as a cherished friend. Both Tom’s are wonderfully alive to me and in the joy-filled family who carries him with them everywhere they go, even as his wife formed a new family. Tom never gave up and, like you, he never gave in. To Life!

    With admiration and the greatest of hopes,
    Bill Kleine

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  10. Tom – I have been following your story on this blog and through the various Facebook support pages. I am stage 4 anal cancer with mets to my liver and lungs. I’ve had 4 treatments of Y-90 over the last year so I hope for the best for you. The last treatment was mostly for pain relief from an expanding liver and a couple of tumors that were still growing. I also just completed 10 session of direct beam radiation to my liver for 2 tumors that were also being a pain.
    Again, I wish you all the best with this new treatment.
    Kelly Stec

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  11. As a fellow “stage IV incurable” cancer patient who lost my father to a very rare disease at age 45 called paraganglioma I knew the minute my first surgeon/GP said my tumor was benign that they were wrong. It took me two years to find a study that would take a very rare “GIST” patient with a family history of paragangliomas to accept me as a patient. There the SDHB germline mutation was found. I then choose the best GIST specialist I could find. He did tell me NEVER to do a Phase I trial. I’ve been offered phase trials but the patients who’ve been on them have had no success at stabilizing their “wildtype” GIST tumors. I sent a patient to UCSD last month to get the double procedure of Y-90. I’ve sent other patients to UCSD where there is a surgeon who’ll do a double liver surgery when their local surgeons said “inoperable” . . . I created my own website to explain how my disease is rare but related to other cancers, even pancreatic: http://www.SDHcancer.org . .. When I was first diagnosis I took on the motto “Humor in Adversity” . . . My husband is great at finding the irony in every hospital situation and has me laughing during many recoveries. My father created a character for Walt Disney called “Super Goof” . . . Super Goof couldn’t save my father from tumors but I’m hoping he has a new crop of super goobers that might save me.
    Thanks for your honest posts from the front line.

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  12. I am continually amazed at your positive outlook, your steadfast patience, and your zest for seeking a cure for all of us touched by CRC. I believe the SIRT will work and more than likely stabilize your liver. Cheers and thank you for being the example that all of us should emulate in our lives….God Bless you…

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  13. Thank you! You are so generous with your knowledge and life. Thank you and God speed to slow down your disease.

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  14. Tom, you are a remarkable human being whose work and generosity have helped and will continue to help thousands. Your words are intelligent, honest and inspiring. THANK YOU.

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  15. Much love to u Tom,noble warrior.a role model for courage and goodness.

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  16. Much love to u Tom,noble warrior.role model for courage and goodness.

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  17. Dear Tom – One thing I love about this blog post is that you show that it’s not about who is so clever that they can outsmart cancer, or who has access to more resources. All that certainly helps but, at the end, dealing with cancer is a complexity of many factors. EVERY patient, including you, needs to deal with the hand that they receive. THAT empathy and compassionate viewpoint you express, in addition to all of your practical help you give in terms of knowledge and information, is so helpful for fellow patients, or caregiver to read.
    Love and admiration to you, for *all* that.

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  18. Tom, you have proven to be the consummate advocate that benefits all of us. Our hearts are full of gratitude that you shed your introverted life and transformed into a compassionate leader. To your wonderful life and the success of SIRT!

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  19. You. Are. Awesome. And such a gift to everyone in the cancer world! Hoping & praying you are cleared for the treatment you need ASAP!

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  20. Me = CR
    YOU = ROCK STAR

    WORD !
    kickass and take names my friend

    Harmony on the Journey
    CR

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  21. Thank you so much Tom for your influence. You helped Jim and I enjoy 4 more years we were told we wouldn’t have. He passed away last Thursday and I’m forever grateful to you and to my husband Jim for the extra time we were blessed to have together. He will be engraved in my heart and soul forever. Ironically, he was signed up for 3 more clinical trials just 1 week before he left this earth. Keep up the good fight. I’m here for you and all others fighting this disease called cancer. God bless!

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  22. Thank you so much for your guidance and courage. Yes, you have changed this CRC world in so many ways and so many, you may never know about. Bless you.

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  23. Dear Tom,
    Thank you for sharing your experience. My mother is stage 4 CRC, MSS.
    I am very interested in off label use of FDA-approved drugs like as HIV drug maraviroc.
    I found the some articles that the anthelmintic drug, Niclosamide or mebendazole may be potential drug for CRC.
    I am considering for off label use of these drugs.
    I hope this information is useful for you.

    doi: 10.3390/cancers8060059
    doi: 10.3332/ecancer.2014.443

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  24. Tom, I have been following your blog for sometime and it is always hopeful and informative. I am in my 3rd year of MCRC and on friday learned that my liver is covered in disease as well and I have liver disease symptoms as well. My Dr’s do not think SiRT is an option for me because I have so many small sites. Reading your post it seems that SiRT is the way to go, do you have any resources I could reference or suggestions re: second opinions?

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    • Hi Travis, I think whenever there is a big medical decision and a patient is not 100% comfortable with the medical advice given, a second opinion should be sought. I would try to get a second opinion from an interventional radiologist at the closest NCI-designated Cancer Center or University Cancer Center to you. It is key to get the opinion from an interventional radiologist (and not an oncologist) since a radiologist is the type of MD who is actually an expert in SIRT and would be doing the procedure. A good SIRT patient advocacy group/website is: http://www.beatlivertumors.org Take care, Tom

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      • Tom, thank you so much for the reply and suggestion. I have a great IR on my team and will certainly consult with him. Thanks again for all you do…Never give up!

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  25. Pingback: Not the Most Fun Rollercoaster… but I’ll Take It! | AdventuresInLivingTerminallyOptimistic

  26. Tom,

    I do not know how you do it all. Take it one day at a time. Try to be like Einstein and slow down time. We need you to last longer for all of us. You are needed and important. Look forward to hearing the success of your treatments.

    -Adam

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