Going Off-Roading – Experimental Treatment Strategy Style

Yes, it is time for another medical update!

It is funny… the original intent of this blog (before I published the first post) was for it to be a vehicle to give medical updates to friends and family.  Starting with the first post “TAKING THE LATEST TREATMENT PLUNGE” I decided to make the scope of the blog much broader and deeper than that – which I believe happened – to an AMAZING degree!

But in recent months, as my disease has run into more serious twists & turns, the posts have been more & more focused on my own personal medical updates, so in some ways, the blog has transformed partially to its original roots.  I have tried hard to include informative explanations as I talk about my medical case however, such that I hope that the blog is still achieving much more than simple medical updates…

Liver Y90-SIRT #2

To begin with – I know many are curious how my Liver Y90-SIRT #2 went a few weeks ago.  Y90-SIRT is a fascinating technology that I wrote about in detail here.  I mentioned in the post: A CANCER LIFE WEEK: A LITTLE BIT OF THIS, A LITTLE BIT OF THAT) that at the two day mark, the procedure was very well tolerated with basically no side effects.

Right after writing that post, things changed and side effects that some Y90 patients experience hit me… For a couple of weeks, I dealt with a mixture of continuous nausea and continuous fatigue.  So dealing with those side effects became a big part of my August – although in “cancer speak” they were “tolerable” (I just got to know my bed and toilet on a stronger relationship level! haha).  Thankfully I have been feeling a bit better recently and I think the Y90 side effects are resolving.  In terms of treatment, I have not had any since the Y90 procedure on August 2.

Why no treatment?

A mixture of giving my liver/body a break after hitting it with high (localized) radiation with the Y90-SIRT and working out planning for my post-Y90-SIRT treatment!  I had mentioned that my next therapy would be an off-label, self-designed, PD(L)-1 combination therapy which both I and my oncologist agreed upon.  We finalized plans and the past few weeks we have been working out off-label logistics.

New Treatment Plan Starting on August 22!

On August 22 I’ll get my first infusion of the new treatment plan!  I am very excited about it because as I mentioned before, although I certainly wish I didn’t have cancer, it is the greatest research project of my life.  As I mentioned, the combination therapy is of my own design (approved by my oncologist) based upon my medical situation and my observations of the CRC experimental therapy landscape over the past few years – which from an empowerment point of view is incredibly cool!

The Treatment Plan

  • Continue FOLFIRI chemo – the purpose here is to continue to control the aggressive growing tumors in my liver. In general they appear to be sensitive to FOLFIRI/Erbitux and I am placing the bet that FOLFIRI is doing the heavy lifting in that combination.  The Y90-SIRT appears to have taken care of the biggest, most dangerous and a large proportion of my liver tumors – but not all – so the liver still needs aggressive containment with systemic therapies.  We bought some significant breathing room with the Y90-SIRT’s but not 100% containment.
  • Add in the PDL1 inhibitor “atezolizumab” (Tecentriq) – this is to attempt to bring my immune system into play and attempt to control some slow growing tumors in other parts of my body which are FOLFIRI-resistant. I have met a number of patients where chemo + PD(L)1 inhibition was quite active.  Although anecdotal, it makes this combination have some successful clinical precedent.   There are numerous clinical trials on-going which combine chemo with PD(L)1 inhibitors based upon pre-clinical data which shows synergy – e.g. perhaps via neoantigen release upon cytotoxic killing of cancer cells.
  • Swap in Bevacizumab (Avastin) for current Cetuximab (Erbitux) – I have been on Erbitux since March. Previous to that I was on Avastin.  I swapped out Avastin (which appeared to be working) primarily to facilitate the various surgeries and procedures I did in the spring/summer.  Those are now done and in preclinical models Avastin is more synergistic with PD(L)1 inhibitors than Erbitux – so it is time to switch back!
  • Continue Probiotics – In preclinical models they are synergistic with PD(L1) inhibition and in an ever-growing pile of clinical data, the importance of the gut microbiome on the systemic immune system is being observed!

PD1 Simple Graphic

As I said, the first dosing of this triplet therapy is on August 22nd! Wish me luck as I leave the exit ramp of FDA-approved therapies and enter the off-roading world of experimental treatment strategies as my primary treatments!  A reminder: based upon the aggressiveness of my disease, my inability to fly to a different trial site, my melanoma etc – for medical & logistical reasons (and there being a reasonable off-label strategy to try): an off-label strategy made more sense for me right now than a clinical trial…

Speaking of Clinical Trials…

Although I am hopeful and optimistic that the above described PD(L)1 combination strategy will be efficacious – I also have to hope for the best and plan for the worst.  I have often used the analogy of having multiple treatment plan planes lined up on my taxiway, with their positions being swapped as medical and logistical situations change.

The next plane on my taxiway (which if the current planned treatment doesn’t work, I’ll need to activate in the fall) is a clinical trial currently being set up at UCSD.  It uses a high “pulse dosed” EGFR inhibitor “erlotinib” (Tarceva).  This means that a very high dose of erlotinib is given – but only for a few days at a time.  Based upon data I have seen, this looks like a very promising treatment strategy to me and I am excited to participate in the trial!

In summary:

  • The strategy has been tested clinically in pancreatic cancer patients with significant clinical efficacy seen. This is impressive since pancreatic cancer is VERY tough to treat clinically.
  • In pancreatic cancer the strategy was active in KRAS-mutated patients which opens up the possibility of clinical efficacy in KRAS-mutant CRC patients.
  • In pancreatic cancer patients, the high pulsed dosing had significantly reduced side effects compared to normal daily dosing.
  • In preclinical models, the strategy is more active against CRC then against pancreatic cancer!

The trial is currently in the process of generating the necessary paperwork for its IND.  Additional funding is necessary to pay for the trial overall.  A number of funding strategies are being employed but I have offered to be a part of those efforts and have started a go-fund-me fundraising campaign to help get this trial going at UCSD for CRC patients with as little delay as possible!  On a very personal level, I hope you consider donating!

So that is where things stand right now.  I am a mixture of excited and nervous (mostly excited!) as I leave the world of FDA-approved therapies and start to go off-roading into the world of experimental therapeutics as my primary treatment!  On the side, my medical situation continues to throw the occasional surprise punch at me (e.g. 2 ER trips & an overnight stay in the hospital this summer due to the surprise pulmonary embolisms!).  These surprises remind me that I am no longer just a drug discovery scientist… or even just a scientist-advocate – but overall, I am first and foremost a cancer patient in need of therapies & medical help myself.  Any cancer patient can tell you how tough that is mentally, emotionally and physically.  Thankfully, I have the advantage of at least also participating in the greatest scientific project of my life…

To Life!


PS Although I have been dealing with some Y90-SIRT side effects the past few weeks, mentally I have felt reinvigorated and with that, I have resumed my loved column writing for the Philadelphia Inquirer / Philly.com.  You can read the new post here.  I absolutely love doing these creative writings – all of my writings for them are archived here!

19 Comments on “Going Off-Roading – Experimental Treatment Strategy Style

  1. Thank you for sharing this info. I finally was able to acquire a copy of the Newsweek focusing on cancer fighters. We were on our way home from Maine and Vt. There it was at the airport. Back to reality after vacation. Thank you for sharing this despite your own occasional weariness(that you admit to feeling). “A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles”. Christopher Reeve In both your case and his I would argue that “ordinary” should be removed. Thank you for persevering.


    • Tom, I’m so glad the Y-90 treatment went well! Your positive and resilient attitude throughout all these ups and downs continues to inspire me and thousands of others familiar with this disease!


  2. Praying for you Tom.I just know everything will be alright for you.Which probiotics are you taking? There is a huge array of them out there and its so difficult to make a decision

    Liked by 1 person

    • Hi pz,
      I am in the same boat as you – for that reason I don’t endorse the particular brand I buy since I can’t independently test/compare different brands on the market.


  3. A man with a plan! And a back-up plan too. Hoping and praying that these treatment plans are life saving. I like the way you are attacking the disease from multiple angles. Take care, Tom.


  4. Praying that going off road gets you where you need to be. Wishing you all the best on this journey Thank you for sharing and educating!


  5. Hi Tom,
    I still find a lot of interest in hearing from you.
    And i follow each informative explanation you deliver on your disease and your daily life.
    If I understand you well, this blog of yours was first dedicated to friends and relatives. But now you are considering to open it to new people. I am one of these people.
    I see myself as a reader eager to understand how it is to be part of the decisions and strategies when it comes to our health.
    So, thank you for writing to me too.


  6. This article is interesting, not sure how to take this, and don’t take this the wrong way, but having more difficult to locate agreeable matching patients for clinical trials would be good. I know the genetic type they discuss is very hard to find, but in general persons volunteering for clinical trials are a big help to benefiting us all. Thank you very much.



  7. Hi Tom
    You’re inspiring to me! I’m CRC MSS and just started a trial with cobimetinib, Atezolizumab and Avastin. I’m 22 days in with a bit of a rash and some fatigue but all in all feeling pretty well. I’m wishing you well as you embark on your new plan. I’ll post some results in September. Here’s wishing you the best. Charles


    • Good luck with the trial Charles! From a scientific viewpoint it is a very rational combination to try – in theory the avastin addition could improve both response rate and magnitude of efficacy. I am glad the side effects haven’t been to bad for you. Wishing you all the best, -Tom


  8. Hi Tom,
    I just love reading your blog. You have a magic power of contagious hope and optimism 🙂
    I wanted to ask you a question though, since you are a medicinal chemist and I know that you are involved in a lot of lung cancer research and you were part of the team that created the ALK targeted therapy, I think you will have valuable insight into this question. I mentioned to you before that my dad was recently diagnosed with stage 3 lung cancer (NSCLC adeno). He is currently on Carboplatin and Alimta as first line chemo since he is wild type for all EGFR, ALK, ROS1 targeted mutations. I have been reading a lot on “Inspire” (lung cancer survivor network) about the Cuban lung cancer vaccines Cimavax and Vaxira. I would really really appreciate your input/scientific opinion on these two vaccines please please please. Thanks in advance and wishing you the best of luck and a huge response to your new personal trial of treatment in September 🙂
    Best, Farah


  9. Dear Tom, Best of luck on August 22nd! You have helped me so much by giving me words to express what I am feeling and trying to accomplish. Your explanations make the science understandable and the emotional challenges communicable. I especially could relate to your image of arranging the planes ready to take off to describe coming up withprospective treatment plans. I will be working with my oncologist on the same sort of arrangement in early September. Thank you for putting such a well informed and human fact to cancer. And many blessings to your family and friends who are there for you as well.


  10. Tom, we’ve missed you over at Colon Talk, I was worried as we haven’t heard from you in a while– I’m so glad the Y-90 treatments went so well. Keep at it my friend, never give up!


    • Hi Josh,
      Sorry I have been so quiet on Colon Talk – I’ll try to rectify that!!
      Thanks for checking in on my blog & the note!
      Take care,
      Tom (DK 🙂 )


  11. Pingback: Positive Sign or False Hope? Time Will Tell… | AdventuresInLivingTerminallyOptimistic

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