It’s a Marathon Not a Sprint

I don’t normally write blog posts so close together but I know everyone has been curious what my new treatment plan would be after I announced 3 weeks ago that I had become resistant to Erbitux.  Since then, there has been radio silence in terms of my next step treatment plan but I assure you things have been very active in the background… I just couldn’t post an update until plans became clear.

I discussed with my oncologist the various treatment options that were available.  My list started with about 5 things to choose between – this list was steadily triaged down to only two final contenders.  Two very different directions for my treatment to go – in fact diametrically different directions.

Batter Striking Out

Option #1 – Swing for the Fences with an Immunotherapy Clinical Trial

As every reader of this blog knows, I am a HUGE believer in the potential of immunotherapies to transform cancer treatment.  I have a type of CRC called “MSS-CRC” which so far has been resistant to immunotherapies. A part of my daily life is to constantly scour the oncology literature for new strategies to attempt to fight MSS-CRC as well as monitor data flowing in from the various clinical trials in progress.  Thankfully I have contacts in or near many of the major immunotherapy clinical trials – so I have a lot of ears on the ground!

I’m going to write about this in more detail in a later post (I GUARANTEE THAT!) but at least one of these trials is showing preliminary signs of success – at least in one MSS-CRC patient…  It is a personalized immunotherapy trial at the NIH/NCI – NCT01174121.   As I said, I promise a full science post focused on this trial in the near future.  The person whose cancer is responding is a good friend of mine and I am ecstatic for her – it couldn’t have happened to a nicer person – I can’t wait to tell her story!

Looking at my current fantastic health (I ran 10k on Sunday without losing my breath!), I decided that now may be a good time to “swing for the fences” and go for an immunotherapy trial.  Historically, cancer patients waited until all treatment options were exhausted before trying a clinical trial – the new immunotherapy paradigm is starting to change that dogma.  My melanoma history ironically precludes me from almost all clinical trials but I had hopes that a research organization like the NIH/NCI would be more flexible so I decided to go for it… I knew the trial won’t work for everyone – and perhaps it might work only for very few people – but, if it worked for my friend, I knew there was a chance it might work for me.

Unfortunately, the trial has strict entrance requirements and I found out today that I am not eligible.  As hoped for, my melanoma was not an issue, so this trial could still be an option sometime in the future!  Disappointing news for sure – but as a HUGE HERO of the CRC patient community Belle used to say “Don’t Retreat – Reload

2012_Infusion Number 1_IMG373_Lazy Boy Right On! - Copy

Option #2 – A Return to Chemo ala 2012

This leaves the backup Option #2 as my new treatment plan.  A return to the same style of chemo I did back in 2012.  I’ll be receiving a drug called irinotecan as well as 5-fluorouracil and Avastin (bevacizumab).  Put together they are a standard CRC chemo cocktail called FOLFIRI. Irinotecan is a type of cytotoxic traditional chemo that works by inhibiting an enzyme called Topoisomerase 1 which prevents DNA from unwinding which to be technical, totally screws up cellular replication.  Because of that mechanism of action, it also targets normal cells – producing the well-known chemo side effects (nausea, some hair loss, fatigue) in addition to the funny nickname in the CRC community “Irinotecan = I run to the can” haha, who says CRC can’t be funny 🙂

Although not an easy thing to do – for many CRC patients, these chemo treatments can be very effective, allowing life to continue for years.  Some patients have a lot of trouble with the side effects but most find ways to handle them.  My good friend Marie (who this blog was partially inspired by/named after) has been treated by irinotecan-based chemo therapy for over 6 years!  Life changes for you and your entire family – I personally know hundreds of people doing chemo – but Life goes on. Life is remarkably flexible and the patient and the family adjust to the “New Normal”.  You do what you have to do.

Even now, note that I am doing irinotecan monotherapy instead of the more standard of care FOLFIRI chemo cocktail.  This follows my consistent strategy of using minimal treatments necessary to keep my disease under control.  I have been very blessed that the slow growing nature of my disease has given me that option.

Updated Post: After the original post, I decided that if I am going to do chemo, I want to have the best chance of efficacy as possible continuing to be balanced with Quality of Life which is very important to me.  For that reason I decided to try the FOLFIRI chemo cocktail instead of irinotecan monotherapy as original planned.  Following my consistent strategy of keeping a very close eye on quality of life: I made these decisions: 1.) I will be taking the 5-fluoro uracil component as a bolus injection instead of using the standard 3-day take-home chemo pump – this actually makes a HUGE impact on quality of life! and 2.) I will not hesitate to deescalate to only irinotecan if the side effects are severely impacting me and my family.

Standard treatment protocol would have had me on irinotecan (actually initially as a part of the strongest CRC chemo cocktail called FOLFOXIRI which combines 3 types of chemo: 5-Fluorouracil, Oxaliplatin and Irinotecanover two years ago.  Luckily because my cancer had been so slow growing, I put off even considering strong chemo for over two years – and I have had probably the most amazing, productive and meaningful two years of my life!  I honestly believe I have travelled the path I was meant to travel.

My Current Goals

  • Even though there will be side effects – there is a great chance that this chemo will add years to my life – years of being Dad to my two little girls!
  • As a “treading water” strategy – it will hopefully allow the incredibly fast pace of current research to advance & the promised (including by me) CRC miracle treatment cavalry to arrive to produce a long term remission or cure!

Those are both two HUGE incentives to counterbalance the side effects of the treatments!

Before the advent of the immunotherapy miracle being seen now in multiple cancers, the phrase used by Stage IV patients was the disheartening “chemo for life”.  That is why the Hope being generated by immunotherapies (and also other potential CURE strategies such as Dr. Heinz-Josef Lenz’s research via The Wunder Project on CRC stem cells!) has been a ground shaking transformative event in the patient community!

My goal is simple: LIFE. As of right now, balancing everything, I believe the above strategy is the best way for me to achieve that goal.

Time to shrink some tumors and keep running this marathon called Life…

To life!


2015-05_Team Triathlon_5_Cropped

25 Comments on “It’s a Marathon Not a Sprint

  1. Thanks for the update, Tom! Sounds like you’ve got a great strategy in place! We are hopeful, just like you, that while my husband receives his chemo that it keeps the cancer stable, until something new and better comes along. You will be in our thoughts and prayers!!

    Liked by 1 person

  2. Thank you for sharing your inspiration and fighting spirit with us. You are amazing (even w/o the Spiderman suit) 😉

    Liked by 1 person

    • Hi Sandi – I believe research has shown limited benefit to switching directly to Vectibix. What has been shown in multiple trials however is by re-trying Erbitux e.g. after a 6 month break – many patients regain sensitivity to it. That is part of my plan – i should have mentioned it – to retry Erbitux in 2016 after months off to remove the evolutionary pressure of its presence.


  3. With regard to minimal treatment needed to keep things under control, have you considered irinotecan every 3 weeks rather than 2? My wife (diagnosed in 2011 with liver, lung, and distant lymph node metastasis) has had shrinkage then no growth for 18 months now on irinotecan/avastin. She did every 2 weeks for the first 4 cycles and then every three weeks after that for quality of life — and it does make a BIG difference! Her dosing on the Irinotecan and Avastin is the standard 2 week dosing (no increases for the extra week between treatments).
    I’m so grateful for your remarkable sharing. And knowledge. And optimism!
    Thank you!!

    Liked by 1 person

    • Hi Jim, THANK YOU for the 3-week schedule advice! I’ll see how the biweekly goes but if there are quality of life issues, I will definitely bring up your experience with my oncologist! I love how the net can bring people’s experiences together to help one another. Thanks also for the kind compliments. Cheers! Tom


      • Hi Marie,
        No 5-FU. Prior to this regimen, she’d been on low-dose daily Xeloda (oral 5-FU equivalent) and it lost effectiveness after approximately 9 months so we presume she’s resistant.
        She also takes melatonin 20 mg before bed each night. There’s a small Italian study which suggests that melatonin in combination with irinotecan may increase efficacy compared to irinotecan alone.
        All the best, Jim


  4. Tom,
    Sorry to leave such a long post. I promise I never will again!! Met you on the colon cancer alliance site. Reading your stuff it is amazing how similar our attitudes and interests are. I was also a runner when dx 10 years ago at the age of 48. I currently have mets to my lungs having treated lymph nodes in my aortic region 7 years ago with surgery and radiation. Several surgeries, sbrt, chemo, and biological therapy later I am still here and very active. I don’t run anymore (although I think I could if I could stay off treatment long enough) but I sweep row and race with a group of women cancer survivors.
    I share your enthusiasm for immunotherapy. Like you, I believe that “less is more” is the treatment strategy that fits me the best. I do take breaks with treatment. I am lucky in that I have had very little progression even when off treatment. In February, I traveled to Yale to participate in the expanded access trial for TAS-102. While many think someone has to be refractory to qualify, I got in it anyway by just saying I was “intolerant”. Basically, I wanted a better quality of life than on Folfuri and Avastin.
    So far, my scans have been completely stable. However, my CEA has been on the rise. It started in February at 11 and is now 70.
    I am also considering going back on Irenotecan and Avastin as well. At least for a time, if this continues to rise.
    You give so much hope to others, I wanted to give some to you. I have been “treading water” for sometime now and it is certainly possible for you. I believe you have the right tool kit to do this by switching things up and customizing your treatments. Your little girls are darling. I have no doubt you will see them grow up. Just wanted you to hear from a 10 year survivor who’s head is still far above the water I am treading.

    Liked by 1 person

    • Sue, THANK YOU so much for commenting! With that kind of comment you can write as long and as often as you want! 🙂 In all seriousness, it is wonderful to hear from you as a 10-year survivor with active but managed disease. You are right – you gave me a big shot of Hope 🙂 Thank you for that! BTW we are even more similar than you though – I don’t think I mentioned the specifics but in addition to my lung mets – I also have periaoritic lymph mets as well, similar to you. Glad we met at the CCA site and glad you came over here as well! Take care & we’ll both keep treading that water until the calvary arrives! -Tom


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