It Only Takes One Weak Link in a Chain

Pain.

I’ve been very fortunate over the past over 4 ½ years since my cancer diagnosis.  I had some pain immediately before my diagnosis from my primary tumor but ever since that surgery in June 2012, I have lived a pain-free life.  Except for an occasional cough in-between treatment regimens, zero symptoms of cancer.

Sure I have chemo side effects to deal with, especially when I switched over to Full Fury (oops I mean FOLFIRI  – a turn of a phrase lasting legacy of my friend Kenny…) – but impacts from the cancer itself?  Nope – when not actively on FOLFIRI, I can still run 10k without losing my breath – my cancer has truly just been a bunch of spots on a CT-scan!

Until a spot decided to get too large.

I had my first hints of pain back in August but it quickly resolved and I attributed it to sitting funky in an airplane seat flying back from a whirlwind cross-country trip over the summer.  Yes, even with Stage IV cancer – all the standard things that happen to regular folk still happen to us too.  Although in our case, every little ache and pain is accompanied with a chilling “is it my cancer growing?” thought… So I had that mental scare but when it resolved, I laughed at myself for being such a worry wart.

Then about 3 weeks ago the pain came back.  A very odd pain in my lower back, something I had never felt before.  Strong, unyielding to over the counter meds, diffuse as it moved around my lower back and occasionally even reached around to the front.  Strong enough to break up my already fragile detente with sleep issues, sleep now limited to passing out at 9 PM, waking up “for the day” at midnight.  Me and narcoleptic spontaneous napping later in the day became new best friends.

I have to admit those three weeks were the toughest I have felt emotionally for years.  Pain, low sleep, worry about what is causing it and by chance a close friend going through serious health issues simultaneously added up to a mentally toxic negative feedback loop.

It was the first time I have ever “felt sick” from my disease – over 4 ½ years since diagnosis.  It was the first time that aside from chemo, it impacted how I interacted with my daughters.  Too much pain to lay with them for extended bedtimes.  Too much pain to do at all as much with them as I normally like to (although via willpower I still do as much as possible – I did make sure to celebrate Halloween with pumpkin carving and trick or treating with them!).  Dusting off the remote (no  seriously, it was dusty, I seriously hate laying around & watching TV! ha) I started watching TV while curled up in bed for the first time in years, too tired & in pain to be a fully functional member of the family. Too tired & in pain to work on as many of my beloved advocacy projects as I normally do.  But like the Halloween efforts, via willpower I continued to do as much as possible in terms of both advocacy projects as well as my continuing scientist day job. I suspect based upon doing that most people had no idea I was struggling. Since I could do these activities, I didn’t want to say anything until a cause was determined. And I plan on continuing to use the same willpower moving forward, I have a lot I want to accomplish! 🙂

We probably now know the cause.

My disease is in my lungs and lymph nodes.  Metastases in different parts of the body can behave differently.  Kind of makes sense since they probably have to behave differently just to be able to survive in different, unrelated parts of the body. My lung spots are still fully stable or shrinking from chemo but the disease in my lymph nodes has become FOLFIRI resistant.  Looking back carefully to my CT-scan last May, the hints of it were already appearing then.  There is now a pretty big tumor that is suspiciously located in my back which quite plausibly could be the source of my unexplained pain.

It is located very close to a number of organs making it very tricky to surgically remove or kill with targeted radiation/ablation – so for now, I and my enemy will just be staring each other down on either side of the demilitarized zone called my abdomen.

My lymph node disease is the weak link in my disease treatment chain – it is the link driving treatment decisions right now.  You only need one weak link in a treatment chain to do that!

Because of that weak link, my FOLFIRI chemo treatment card now needs to be retired (at least for now) although anticipating this eventuality, I do have some experimental FOLFIRI resensitization cards to be played if needed, which are sitting lined up patiently on my future treatment plane taxiway.

“Coincidences” from the Universe are Amazing Sometimes

A few weeks before the pain started, the very cool oncolytic virus + PD1 inhibitor immunotherapy clinical trial possibility suddenly & unexpectedly fell into my lap.  A few days after the pain started to ramp up, I found myself in LA – with the initial low level pain driving there along with me – being told I had a slot in the trial!!  This week, the trial emailed me confirming I was lined up for a dosing start in December.  Yesterday, I received the preliminary CT-scan results by a phone call showing chemo resistance & the need for a trial. A trial just miraculously set up.

It all could not have been planned out any more perfectly.  Yes, I have a series of “in case of emergency break glass” plans lined up in general – but in terms of perfect timing, even I’m not that good! 🙂

in-case-of-emergency-break-glass

Plans, Plans and More Plans…

So far it does not appear that the troublesome tumor can be taken care of easily, especially in light of a planned near-term clinical trial complicating matters. So what is then is the plan? Well, I am a firm believer that you make decisions based upon good science and although you can’t ignore new facts, you also shouldn’t change plans on a dime.  So… I was very excited about my impending clinical trial before the chemo-resistance caused pain and now?  I’m even more excited!!  The trial uses a completely different treatment strategy than chemo so there is no expected overlap in terms of treatment resistance. If the trial is successful, perhaps the troublesome tumor will be taken care of that way w/o surgery etc.!

Those lymph node tumors have built up a strong defensive line, chemo is no longer getting through – I’m now going to try to outflank them and attack them from the side, before they know what the hell hit them!

In terms of the troublesome back tumor – I received a full analysis of potential options this week from UCSD and as follow-up (working around my clinical trial logistics) also be getting second and third (& maybe 4th!) opinions.  I was honored to be invited to give a talk to the GI-oncology department at the world renowned MD Anderson Cancer Center in a few weeks – while there I will be meeting with a top CRC oncologist to review my current situation and options.  Similarly, through the WunderGlo Foundation, I collaborate with another top CRC oncologist Dr. Heinz-Josef Lenz at the USC Norris Comprehensive Cancer Center who I will also ask to review my case for options!  I will also probably get the opinion at the City of Hope Cancer Center while I am  there for my clinical trial.

Between getting opinions at UCSD Moores Cancer Center, MD Anderson, USC, and City of Hope, don’t worry about me… I am in very good hands! 🙂

adenoviruses

Most Importantly

Most importantly, ironically my spirits are now up.  I am mentally back to my old self.  Yes the pain is still there and yes I still struggle with sleep – but there is nothing… NOTHING… that gets me more FIRED UP than a challenge.  Something not nebulous like unexplained pain… but instead something known, something I can now focus on and react to. Like a weak link.

That pesky weak link in my chain… it had better be ready… I don’t think it will know what hit it.  First plan of attack: how about 3 trillion virus particles genetically engineered to seek out and destroy CRC? I like the way that sounds.  A lot.

-To Life!

40 Comments on “It Only Takes One Weak Link in a Chain

  1. Thanks for sharing your journey with us. I am very excited for your participation in this trial. It is definitely coming at the perfect time! Thank you for being such an inspiration! You will be in my prayers!

    Liked by 2 people

  2. I admire your courage and I am pretty sure the virus will tackle your cancer and you will be free of it.
    I have a small question as my mother facing the same situation than you, exactly the same as she is battling since almost 5 years with her Colon Cancer which is now on lung.
    Can you please help me to find a solution here in Europe for this Trial you are eligible for? I would really really appreciate your answer. Cheers. Maz

    Like

    • Hi Maz, My exact trial is not available in Europe. Aside from the Cobi/Ateo Phase 3 trial I have written about extensively in May/June – in terms of European CRC trials, as a scientist (and not a MD) I find an impending Phase 2 trial start using Maraviroc by Niels Halama, MD (Principal Investigator) at the National Center for Tumor Diseases, Department of Medical Oncology Heidelberg, Baden-Württemberg, Germany to be very scientifically interesting.

      Preliminary Phase 1 trial results have been published: http://www.cell.com/cancer-cell/pdf/S1535-6108(16)30087-3.pdf This could be an interesting trial to potentially discuss with your Mother’s MD/medical team for their medical advice.

      Best of luck, Tom

      Like

  3. So sorry for the pain, Tom but it does seem like the universe is talking to you! Feels like you are meant to be on this trial. And I understand about feeling mentally better now; I am always most stressed with the unknown and when I don’t have a plan. Once there’s a plan, even a tough one, I feel like I’m moving forward. I am so hopeful for you with the new trial. Kick that cancer out !!! Thank you as always, for sharing your journey, it makes all of ours a little less lonely.

    Liked by 1 person

    • Thank you for the comment Susan – I agree completely!
      It is interesting, my writing both makes me feel less alone as well as has the same impact on others reading it – we are all in this together!
      -Tom

      Like

  4. Tom will be thinking of you and hoping you get some good options for pain control from all those
    top notch docs til the virus and PD1 drug gobble all the cancer cells up faster than a super pac man.

    Liked by 1 person

    • Thanks Jane! I started pain control last night and it worked wonders in terms of getting me more and better sleep – I feel reinvigorated! BTW I love your super pac man analogy! Take care, Tom

      Like

      • That pac man comparison is so funny. I attend a Cancer Wellness exercise program at the local college. A woman with smoldering multiple myeloma used the pac man description too.

        Like

  5. I am very sorry to hear that you are in pain but very happy that you have so many options. Thank you for your continuing efforts to blast this rotten disease out of our lives!!

    Liked by 1 person

    • Thank you Marie! From your wonderful blog I know you have faced pain issues and more, wishing for both healing and comfort for you as well!

      Like

  6. Totally rooting for you big time, this all sounds like a great plan, all the v v best. Your courage is a such an inspiration, thank you for sharing.

    Liked by 1 person

    • I know, it is going to arrive fast, not long at all (a good thing!) – especially with Thanksgiving fun right in the middle! Maybe the trial will be the biggest and best Christmas present I have ever received! 🙂

      Like

  7. I am sorry about your pain Tom, but very happy about your new options. Pulling for you Tom. Thanks for sharing…

    Liked by 1 person

  8. I have been reading your posts for some time with great interest and admiration. I am a St. 4 LC patient diagnosed 2 years ago. This one, especially due to your description of how pain changes the picture, and the undesired adjustments you have had to make because of it, really strikes me. I think your plan and trial, as well as the opportunity for consult at MD Anderson is excellent and will yield great benefit. You are an inspiration, a clear and reasoned voice in the midst of chaos. And I certainly understand and appreciate the chaos and reasons for it as well. You are a patient first and foremost, with amazing honesty. I am not nearly as brave and unstoppable as you, but your voice is great to hear. Thank you and all the best.

    Liked by 1 person

    • Thank you for the very nice comment Linda. I liked this phrase you used, I hope (as my goal) that this is indeed the case: “…a clear and reasoned voice in the midst of chaos”.,,,

      Wishing you the very best as you navigate your own LC diagnosis, I bet you have already demonstrated more bravery and a propensity to be unstoppable than you realize & will continue to do so in the future!

      Take care,
      Tom

      Like

  9. Thanks everyone for the well-wishes yesterday, too many were given in too many places/ways/forums to thank! I took my first pain killer yesterday and I slept all the way until 4AM (old time)!! That drug for bed time was a Godsend!

    I think this will allow a clearer head to refocus efforts on going for the (at least functional) cure! Oncolytic virus (3 trillion living CRC targeting guided missiles) + PD1 inhibitor (to activate the immune system) clinical trial to start in about 6 weeks. My fully personalized immunotherapy project lining up to be the treatment planned next on my experimental treatment plane taxiway, getting ready for take off in 1H2017.

    More ideas are being actively lined up & ready to follow, if/as needed! Hoping to find a path not only for myself but for others…

    Let’s get this thing done.

    Like

  10. You are constantly in our thoughts Tom, as you race to get this thing done. Your fantastic support has really helped Hayley keep going in her own stage 4 journey. Feeling too far at times, but inspired by you to ‘dig in’ and push on through all the pain and fear of failure.

    Stay focused and life affirming.

    Our very best wishes,
    Jim and Hayley

    Liked by 1 person

  11. Hey Tom!

    I just came accross your articles online via some news sites after googling cure for cancer. You are incredibly inspiring and I pray the cancer trials you are about to embark on are a success.

    The world is so desperate for this to work.. no pressure! Haha

    Goodluck all the way from Australia!

    Praying for you xx

    Liked by 1 person

  12. Tom,

    Thank you for being such an inspiration to us all (colon cancer patient and caregivers alike) and letting us share in your journey.. Your honestly and attitude are truly amazing. Our 25 year old daughter has Stage IV Colon Cancer and is being treated at at MD Anderson for the last three years (12 surgical procedures and 30 rounds of chemotherapy + more unfortunately to come). We are thankful for her good days and hope and pray for a scientific breath through. hank you for all your work in helping find a cure not only for yourself but all others. You have a lot of people behind you – Let’s “Git – R – Done”

    All the best !

    Barb

    Liked by 1 person

    • Thank you for the nice note although I am sorry your daughter has to be going through CRC as well, especially at her age. Being 25, is he MSI-high or Lynch?

      Indeed, whether MSI-high or MSS, Let’s “Git – R – Done”
      Time to beat this.

      Take care, Tom

      Like

      • Hi Tom – She is MSS. She was unfortunately misdiagnosed as having IBS in college due to her age. Prayers and best wishes.

        Like

  13. The palliative care department at my local hospital has been a great help during my treatment. Pain control is so important for good quality of life. I have been using lidocaine patches to take the edge off my pain, it does not constipation issues like typical opioids.

    Like

  14. Pain is a horrible enemy- and I have had a lot. TV – mindless TV like watching hours of HGTV – consume many hours of my weekends and late nights- and the emotional burden- guilt, sadness, anger, make the existential pain worse.

    Thank you for your honest journey and hope you continue to “feel back to normal”!

    Like

    • Few things worse than chronic pain due to disease – physical aspects aside, it is utterly mentally & emotionally demoralizing — which I believe does feed back in to physical well-being and prognosis. Thankfully my pain is now under control with a new pain med and I am sleeping better too. This two things + the rapidly approaching clinical trial start have me in surprisingly good spirits right now!

      Thanks for the comment Allison and take care,
      -Tom

      Like

  15. Pingback: The Times They are a Changin’ | AdventuresInLivingTerminallyOptimistic

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