The Times They are a Changin’

In the immortal words of our most recent Nobel Prize Laureate Bob Dylan , the times they are a changin’… 

This morning I will be having my final Full Fury (FOLFIRI) chemo infusion for the foreseeable future.  A chemo cocktail that I first had the joy of encountering way back in 2012, and after restarting it, have been doing continuously (minus some #CannonballLife breaks) for the past 12 months.  Restarting FOLFIRI last Fall was a difficult decision as I explained in my companion blog posts at the time “It’s a Marathon not a Sprint and “Time to Tread Some Water”.  It is a very rough chemo cocktail, with many side effects – many of which are unpleasant (to understate).  FOLFIRI upended “normal life” not only for me but for my family too.  Not surprising that the tightly controlled poisoning of one’s own/a husband’s/a father’s body does that…

But it works – for me and for a majority of colorectal cancer (CRC) patients.  So we all pull on our big boy and big girl panties – grit our teeth and bear it as best we can.  And overall it is worth it. Well worth it. For most, a life with unpleasant attributes is better than no life at all! Those are the fun stakes of Stage IV life. I’ve lived an incredible 12 months on it!

All of this turned into a regular biweekly therapeutic pattern for the past 12 months – a “new normal” of biweekly infusions and chemo brain amnesia followed by extreme fatigue and narcoleptic naps that became commonplace everyday life before I knew it until………. it stopped working.

I have already done Erbitux (Cetuximab), the two remaining FDA-approved lines of therapy for CRC both have low response rates and limited benefit for most patients – so it is a big deal when FOLFIRI resistance starts to develop.  That is one reason why trying to find drugs (e.g. RRx-001) that can reverse FOLFIRI resistance is such a big deal!  There aren’t many good FDA-approved options once FOLFIRI stops working….


Luckily, I had an awesome immunotherapy clinical trial lined up with perfect timing when my FOLFIRI resistance started to appear a few weeks ago.  As I advocated and wrote in the Philadelphia Inquirer earlier this month, this is a perfect example in my mind of why all Stage IV patients should be actively educating themselves on clinical trials before they “need one”I can’t imagine what my mental state would be right now if I hadn’t pre-educated myself on and pre-planned clinical trial strategies before the eventual and inevitable FOLFIRI resistance news hit.

It is also a perfect example of the “treading water” strategy I wrote about last fall – using FOLFIRI to buy time for science to advance.  My current clinical trial didn’t open for enrolment until this fall – I am very glad I chose to tread water 12 months ago because this trial is a perfect fit & perfectly timed for me!!

Purely on a psychological level it makes for a very interesting mix of emotions this morning.

I am happy & relieved to be getting rid of the side effects of FOLFIRI chemo, which since they are cumulative, have been impacting my life more and more lately – e.g. needing to leave work early for a narcoleptic nap every day to avoid dangerous driving moments – moments I already had started to encounter.

I am worried to be stopping the treatment that continues to keep my lung mets under control, with bearable side effects.  A treatment that has kept my disease at bay for the past 12 months.  It is only my lymph node mets which have stopped responding.

I am scared that I have reached the point of few remaining FDA-approved options – now about to step into the world of Phase 1 clinical trial unknowns.

I am excited & exhilarated beyond belief by the impending oncolytic virus + PD1 inhibitor clinical trial  – based upon fascinating science and really a perfect fit for me and my medical situation.

I am confident in the range of additional experimental therapeutic ideas/strategies I and my top-notch medical team have been pre-assembling over the past year on my “treatment taxi way” – ready to take off into action when/as needed.

Taken all together – it is change that is hitting me full force this morning. Change based upon and involving a lot of unknowns.  Change with literal life & death consequences.  But I knew this day would arrive – various scenarios and variations of it have been playing in my head continuously for over a year now as I laid planning groundwork as best I could.

Change is not bad. It is just intimidating – especially as it feels like every decision made may have life & death consequences. But compared to the other option (accepting the ticking prognosis clock of FDA-approved chemotherapy) the choice was 100% obvious to me.  I have to go for it!

So time to put on my big boy panties, this morning I take my last (for now) chemo infusion which has been keeping my disease under control for the past year, and start the 4-week washout period clock for my clinical trial to start.

I started with a Bob Dylan quote, I’ll end with a quote from his contemporary Neil Young’s song “My My, Hey Hey (Out Of The Blue)”: It’s better to burn out than to fade away

As I prepare to have 3 trillion viruses infused into me in about a month, those are the words I’ll be humming.  “Fading away” is nowhere in my treatment plan!  Of course I should add that I don’t plan to burn out either if I have any say in the matter 🙂

It all comes down to this… if I am facing death in the face – I see my choices as either “try & perhaps die trying” or… “die” – I think my choice is clear.  Time to say good bye to chemo today & prepare for my new adventure 🙂

To Life! Bring it on!


17 Comments on “The Times They are a Changin’

  1. i stumbled upon you blog …. very uplifting
    reminds me of the Shawshank Redemption quote ” get busy living or get busy dying”


  2. I thought about you this Thanksgiving time knowing that you had this upcoming trial on your mind. My continued prayers for you and your family as you prepare for a new adventure.


  3. Wishing you all the best as you start this new adventure! I’m grateful for your voice in the CRC community.


  4. Tom loved this and oh so very true every word – thank you for inspiring and sharing hope in us all Renee


  5. Tom you are an inspiration to so many people who continue to fight! I am ever your fan. I am grateful for your research and you constant uphill battle to stay with us. Much love and prayers for your continued successes. 💪🏼💙


  6. Tom,

    My hope is that the upcoming trial works well for you.

    I am pursuing a similar strategy for my breast cancer but I am hoping for 3 years until there is an improved understanding of how immunotherapy works in breast cancer. Right now response rates are very low.

    I too was running out of chemo options. The strategy that I am pursuing may be of interest to you should the trial fail you.

    I had genomic analyses completed on both tumor biopsy samples as well as in the blood supply. Based upon the mutations, a 3-4 combo chemo was developed using approved drugs that target the mutations regardless of cancer type.

    I currently am on a drug that has been approved for renal cell carcinoma. Drugs that are approved for melanoma as well as kidney cancer are future considerations, depending upon results of quarterly scans and circulating tumor cells.

    The preliminary results of this work, by Dr Leyland-Jones are impressive. Using this approach on heavily pretreated patients, the response rates are 80%+ compared to expected results of less than 10% using the standard of care. The numbers to date are small, with about 100 patients enrolled in the clinical trial and 100 more patients like me who couldn’t take the wash out period retrospectively analyzed.

    The key challenge with this approach is paying for the drugs. Insurance companies frequently deny coverage and if your income is too high, you cannot qualify for assistance from the drug companies. In my case, the cost for the combined targeted therapies is $23,000 per month of which my insurance company is paying $3000. Luckily? for me, we qualify for aid as my husband was recently laid off.

    All the best-


  7. good luck, may the force be with you. I enjoy reading your blog as I get the one treatment behind you every step of the way, and you are so informative! I started up september 2012… peace


  8. Tom – You are an inspiration to all of us in the mCRC world!!! You give us hope and knowledge. Much success with the SPICE trial. We are waiting to follow in your footsteps. Valerie F.


  9. The Neil Young reference brought to mind Heart of Gold and the first eight words … “I want to live, I want to give”. Sure does seem that you have every intention of doing just that, Tom. And that is awesome! God Bless.

    Liked by 1 person

  10. Found your blog recently. Had TG last year now stage 4 peritoneal secondary cancer. Already on second line chemo as first line was used prior to surgery. You are an inspiration and a role model. I told my oncologist that I was researching all options now not when the current line doesn’t work. Thank you. Good thoughts and prayers your way for the trial!


  11. Tom, we are really hoping this would be the immunotherapy party that you have been waiting for. It’s very exiting. We are following your from Norway, my 40- year old husband with crc braf mss spreading all over the place and I. Hoping to join the party as well. Keep up the good work!💙🙏


  12. Prayers, good luck and lots of hugs Tom!!! You are such an inspiration so I never give up. I’m in West Orange County if you ever want a detour from the City of Hope.


  13. Pingback: True Faith (FAVORITE POSTS OF 2016) | AdventuresInLivingTerminallyOptimistic

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