A FOLFIRI Team Triathlon to Crowdfund a CRC Clinical Trial

It’s hard to believe that it has already been almost 12 months since I last ran a UCSD-Moores Cancer Center Team Triathlon, which I wrote about last year in my post THE ULTIMATE TEAM SPORT:

“A big part of being a cancer patient is trying your hardest to not give up in the face of adversity.  In that way it is very similar to endurance sports.  This is what makes the Moores organization of these triathlon teams such a cool idea – it gives the patient a sense of making an accomplishment against the odds and I believe it is also inspirational to the Oncologists, Oncology Researchers and others affiliated with the Cancer Center who are their teammates to compete alongside a cancer patient, especially one who is actively undergoing treatment.  This is why I consider this the Ultimate Team Sport!”

A photo from last May’s team triathlon:

2015-05_team-triathlon_6_cropped

The 2016 FOLFIRI Team Triathlon

The team triathlons that my oncologist Dr. Tony Reid and the Moores Cancer Center organize each Spring and Summer are wonderful events – I am excited that the next one will take place on May 1st!  Yet again, it will be the ultimate team sport with me participating on a team along with both an athlete who works at the Cancer Center as well as this time, a fellow early-onset Stage IV CRC scientist-patient who I’m good friends with!

Looking at the upcoming run… A lot has happened health-wise over the past 12 months since my last team triathlon (to name just some: two lung RFA surgeries, one minor collapsed lung, a return to the relatively harsh FOLFIRI chemo cocktail and a failed attempt to get into a clinical trial).  I highlighted those two last items because they are directly related to today’s post!

A Brief Medical Update

Overall, I am tolerating my current treatment (the FOLFIRI chemo cocktail + Avastin (bevacizumab)) pretty well – I know people have been curious.  The strongest side effect I am experiencing is fatigue.  In the universe of chemo side effects, I consider fatigue one of the best ones to have, if you are going to have one… (e.g. the harshest drug in the FOLFIRI cocktail is “irinotecan” which does not get its slang nickname “I Run to the Can” without good reason – whew, thankfully I have dodged the bullet on that one so far!). My nausea also is being well controlled by the absolute wonder drug iv-Emend (fosaprepitant) – if I ever meet the medicinal chemist who first made that molecule I will give him or her the biggest hug possible! 🙂

FOLFIRI is a bi-weekly infusion. On infusion week, the fatigue is significant (approaching almost narcolepsy on occasional moments).  On my second week of the cycle, the fatigue is better but still present (let’s just say I haven’t seen too many movies lately without falling asleep!). The fatigue only really lets up for the final few days before the next infusion hits. But as you see both online & off, I’ve tried to not let it slow me down too much 🙂

FOLFIRI Narcolepsy

Chemo isn’t fun but I really can’t complain because 1.) Some patients on FOLFIRI have much worse side effects than I do – I’m really lucky how well mine are being controlled and 2.) As of my last scan in February, all of my tumors were shrinking! Those good scans make my current side effects completely tolerable!

This will be the first time I have attempted to run a team triathlon while on FOLFIRI chemotherapy.  So far since starting it, I have only run during chemo holidays.  My goal for the team triathlon is pretty simple: to finish the run without needing any breaks.  I plan on achieving that goal – take that FOLFIRI! 🙂

Crowdfunding a CRC Clinical Trial

My oncologist Dr. Tony Reid is not only a great clinician, he is also a fantastic research oncologist with a research lab at UCSD.  His research includes “translational research” which is basically the segment of biomedical research that attempts to bridge preclinical laboratory results to preliminary clinical trials.

Dr. Reid uses the annual Spring Triathlon to help raise funds for his research.  He has a very special CRC clinical research project planned (hoped) for 2016 – something (to be fully transparent) which will probably directly impact me: a planned investigator-led CRC clinical trial.  Funds raised via this triathlon would be directly used to fund this trial and  I suspect prior melanoma diagnoses will not be an exclusion criteria…  🙂  

The Trial and One of its Funding Mechanisms

One portion of Dr. Reid’s translational research involves novel ways to use FDA-approved therapies for new medical uses.  In my opinion, one of his current scientific hypotheses is great idea.  It aims to dose an “EGFR-inhibitor” drug Tarceva (erlotinib), which is FDA-approved for non-small cell lung cancer (NSCLC) and pancreatic cancer, to CRC patients in a non-standard way.  He plans to use “short-term pulsed” high doses of erlotinib instead of the standard daily low doses currently FDA-approved for NSCLC & pancreatic cancer.  This change in “dose schedule” is hypothesized to both significantly increase efficacy and significantly reduce EGFR-inhibition side effects such as skin rash.  For my KRAS-mut friends, the change in dose schedule appears to potentially allow KRAS-mut responses!  There are no guarantees it will work since the CRC clinical trial hasn’t been done yet – but the related data he already has in hand certainly looks very promising to me.   I am excited for the opportunity to enter this trial when it occurs! 

Crowdfunding early clinical trials has been gaining more attention lately and it has seen some success. An example successful attempt was the funding of another CRC clinical trial by St George’s University of London, studying the generic malaria drug Artesunate. Clinical results from a very small preliminary Artesunate clinical trial have already been published and they need to be confirmed in larger trials.  Here is a quote from the linked story on Artesunate that both illustrates the funding problem as well as now a potential novel solution for research oncologists to consider, when a generic or almost off-patent marketed drug shows pre-clinical promise against a new disease:

“There is a range of repurposed drugs with evidence that they might be effective in cancer. But as in this case the lack of commercial funding is a road block. This trial is a chance to prove that artesunate can stop bowel cancer recurring after surgery, but it could also highlight a funding solution that we can use for other diseases.”

If a generic or almost off-patent marketed drug were proven to be safe and effective to treat CRC – it could potentially impact standard of care in a very cost effective way!  Erlotinib is scheduled to go off-patent in only a couple more years.

Crowd Surfing-Crowdfunding

The picture above is crowd surfing and not clinical trial crowdfunding but I think conceptually there is some overlap.  A crowd of the many acting in the aggregate to prevent a person from falling.  Whether it be at a rock concert or from the lack of additional treatment options.

FOLFIRI is currently working for me as a “tread water strategy” before the immunotherapy calvalry arrives but if it fails, there are only two more FDA-approved therapies remaining outside of clinical trials… so the more “arrows in the quiver” I (all of us patients!) have, the better!  This trial aims to give a new arrow in the quiver.

I’ll be out running my FOLFIRI triathlon on May 1st.  I appreciate any & all forms of cheering me on but if you wish to cheer me on by donating to this CRC clinical trial fund, the clinical trial results may impact both me directly as well as other CRC patients in need of new therapeutic options.  If after consideration you wish to donate, checks can be made out to “UC Regents” with “Dr. Reid Triathlon Research Fund” written in the check’s memo and sent to address below.

April Arnold

Clinical Care Coordinator for Tony Reid, MD Ph.D.

UC San Diego

3855 Health Sciences Drive MC 0987 

La Jolla, CA 92093

I thank you for your consideration!

Psychologically, I look forward on multiple levels to May 1st and running a FOLFIRI Team Triathlon!  Not only for my own sense of accomplishment but I also hope it inspires others in the CRC community including: survivors, those that care for them (literally or emotionally), and researchers alike.

Even better, the triathlon will be raising funds going towards a new CRC clinical trial based upon I believe a great scientific idea.  A great idea which hopefully will successfully identify a new treatment arrow in the quiver for CRC! I’m already looking forward to the sense of accomplishment in both regards!

To Life!

-Tom

11 Comments on “A FOLFIRI Team Triathlon to Crowdfund a CRC Clinical Trial

  1. Tom, this is the time I wish I was married to a Bil Gates or Warren Buffet.! Excited to hear those tumors are shrinking! Take care-Love, JaNelle

    Liked by 1 person

  2. This is very exciting news. I think of you often and include you in my prayers. Stage IV with one nodule in right lower lobe. SBRT radiation a year ago so I am in that hazy nodularity situation so common with SBRT radiation – they can’t tell whether it is response to therapy or progression of disease. Hopeful as always that my upcoming scan will show a stable situation. Good luck on the run.

    Liked by 1 person

    • Thank you for the note Farmgirl and I wish you the best of luck on your next scan! I’ll be thinking of all of my fellow CRC survivors including you during the run 😊 Take care, Tom

      Like

  3. Thank you for this encouraging update Tom! My husband Jim, who is pretty much in the same boat as you, is having the same fatigue side effects with this regimen you are both on. He’s taking Xeloda instead of the 5-FU right now and is showing “no progression of disease” as seen on his last CT Scan last month. We’re taking this as a very positive result! His only comment on you participating in this triathlon is that you must not have the neuropathy in your feet as he does.

    I’m comforted knowing that the fatigue side effect is normal. It has distressed me because it’s not Jim’s normal hyperactive personality I’ve loved for the past 39 years! He pushes through this side effect as well and then pretty much collapses after our 10-12 hour days in our business. Both of you simply amaze me with your inner and outer strength. Thank you for sharing!

    I’m praying that this new trial will be a great success because I believe if it helps you, it too can help Jim. You two are so much alike in your treatments, not being wild-type, etc. that it makes me feel like we have a great chance of getting this disease under control to continue living and enjoying life to its fullest!

    We’ll be cheering you on from Bellingham, WA!

    Liked by 1 person

    • Jim sounds like an amazing guy Becky, thanks for sharing his story! I have friends who have responded to FOLFIRI for a long time – here’s to Jim & I joining that group!

      He is right, I stopped FOLFOX before permament neuropathy set in. I also am not being hit by Hand-Foot syndrome which is more common with Xeloda than 5-FU.

      I am glad you both are keeping on living & enjoying Life to your fullest, cancer or no cancer, that is the way to live!

      As I told Farmgirl above, I’ll be thinking of all my fellow CRC survivors during my run, including Jim-

      All the best from San Diego 😊 -Tom

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  4. Pingback: The (Positive) Power of One Little Number | AdventuresInLivingTerminallyOptimistic

  5. Pingback: Team Triathlon 2016 – UNITED BEHIND A CURE | AdventuresInLivingTerminallyOptimistic

  6. Thanks for all your wonderful hopeful educated post Tom. I read them all the time. So impressed wit your run. Dropped my bit of a donation in mail today.

    Liked by 1 person

  7. Hi Jane,
    Since I’m not a MD, I can’t give medical advice re: when to stop oxaliplatin, I can only tell you as a patient the advice my MD gave me. To be clear, I took FOLFOX while Stage 3, I have not taken it during Stage IV but I may take it again in the future – the balancing act of efficacy and risking permanent neuropathy was determined by my oncologist and that opinion may differ between Stage 3 and Stage IV patients.

    As a Stage 3 patient, he advised me that if I was still feeling the “reversible” neuropathy 14 days after infusion (i.e. at the start of the next planned infusion) that was risking making it permanent. So when I hit that point, as a Stage 3 patient, I stopped the oxaliplatin. Every patient is different but in my case, my reversible neuropathy went away after about a month and it has never returned.

    Like

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