LATEST

Since common questions I get are “When is your next scan?”, “When does {fill on the blank} happen?” and “What is your current/past therapies”, I’ve created this page where I will regularly update significant dates, since I know many are curious:

2017

March 10: HAI Pump Possibility & Treatment Tweak: I traveled to the Memorial Sloan-Kettering Cancer Center for a consult on the liver-directed therapy utilizing a “HAI pump” if my aggressive liver tumors do not respond to systemic iv-dosed chemotherapy.  Plan/treatment change: FOLFIRI chemo + Marviroc continued, Avastin stopped and Erbitux started. Details behind these changes detailed in the post: “Working to Save My Life (and Ending Up with a Full Hour Interview on the Charlie Rose Show!)”

Feb 15: Major Medical Update / Clinical Trial postponed: As the final pre-clinical trial requirement I had a CT-scan.  It showed a sudden & massive spread into my liver of my historically slow growing cancer.  This prompted an emergency return to FOLFIRI chemo + Avastin (same day) + the addition of an experimental MSS-CRC immunotherapy “Maraviroc”.  Full details in the post: “In Case of Emergency Break Glass

Feb 10: NCT02636036 Pre-Clinical Trial Update: Contract/written consent for the clinical trial have been signed.  Pre-trial biopsy & blood tests have been completed.  I am currently in the middle of a 4-week treatment free “washout period” with everything on track for a February 27 dosing start of the oncolytic virus!

Jan 2: General update since Nov 4: In December, the trial informed me that dosing had been delayed until at least late January (I was not given specific reasons why). Aside from Holiday dosing breaks, I have continued on FOLFIRI + avastin since the last update.  In December, I developed increasing lower back pain, we believe likely due to the FOLFIRI resistant lymph node mets.  Starting on Wed. Jan 4, I will begin 2 weeks of daily palliative radiation therapy to help reduce my back discomfort/pain.  Since there needs to be a 4-week break between radiation treatment and trial dosing, this will push the clinical trial into February.

2016

Nov 4: CT-Scan.  All lung spots stable/shrinking.  Some lymph node mets growing, indicating FOLFIRI-resistance. Proves necessity of needing new therapy/clinical trial. NCT02636036 Trial on track for December dosing.

Oct 13: Accepted into my first immunotherapy clinical trial! NCT02636036 “Phase I Study of Enadenotucirev and PD-1 Inhibitor in Subjects With Metastatic or Advanced Epithelial Tumors (SPICE)” Trial pre-activities (biopsies etc) to start in 4-8 weeks, dosing to start in 7-11 weeks.

Aug 22: Restart of biweekly FOLFIRI + Avastin

Aug 17: CT-Scan confirms growth in spots during almost 4-month chemo break for summer.  No new spots!!

Aug 14: The Carcinoembryonic antigen (CEA) test confirms I need to end my  chemo holiday. CEA level now 6.8 µg/L. My “Currently Incurable Summer Vacation” now done… without regrets 🙂 http://www.philly.com/philly/blogs/diagnosis-cancer/Living-with-stage-IV-cancer-Report-from-my-currently-incurable-summer-vacation.html 

July 14: Lung biopsy w/o complication to obtain 2016 Lung met DNA and RNA sequencing for personal immunotherapy research project

June 17: The Carcinoembryonic antigen (CEA) test confirms probable continued response/shrinkage from FOLFIRI+Avastin. CEA level now 4.4 µg/L:).  Almost down to normal range (<3.8 µg/L); Started FOLFIRI at 8.2 µg/L. it was 5.3 µg/L in April – confirms that I can take a chemo summer vacation (monitored by monthly CEA)

June 15: 6-month melanoma check-up clean (1 1/2 years out from diagnosis) – no evidence of disease

May 25: Good preliminary immunology data from my personalized immunotherapy project! A number of neo-antigens including some driver mutations are immunogenic.  Will use my chemo break to build up very healthy blood cells for follow-up testing this summer!

May 23: CT-scan results: Most spots continue to shrink from the FOLFIRI + Avastin (yay!) but toxicity is accumulating.  Taking a chemo break 🙂 , length of break to be determined by monitoring.

April 5: The Carcinoembryonic antigen (CEA) test confirms probable continued response/shrinkage from FOLFIRI+AVASTIN. CEA level now 5.3 µg/L:).  Almost down to normal range (<3.8 µg/L); Started FOLFIRI at 8.2 µg/L.

Feb 25: CT Scan results: Good!  The FOLFIRI+AVASTIN is making ~all my tumors shrink!  I’ll continue on this regimen for the foreseeable future! Public announcement (symposium + blog) that I am working with Human Longevity Inc on a research project that will hopefully lead to an eventual personalized immunotherapy!

2015

Nov 16: Start of FOLFIRI + Avastin (bevacizumab) chemo cocktail after not gaining access to NIH immunotherapy clinical trial

Sept 30: PET-CT Scan – Erbitux has stopped controlling the cancer… New treatment planning initiated

Aug 27: Radiofrequency Ablation Lung Surgery #2 – Next 2 largest tumors successfully removed! Small pneumothorax complication but home after 2 night stay in hospital!

July 27: CT-Scan showed Erbitux continuing to work!

July 14: The Currently Incurable Scientist column started!

June 25: Radiofrequency Ablation Lung Surgery #1 – largest tumor successfully removed!

June 3-7: Cancer Patient Retreat & Colondar-2016 interview/photoshoot

May 1: CT-scan showed Erbitux working!

March 5: First dose of Erbitux (cetuximab)

Feb 26: Attempted to join 1st immunotherapy clinical trialMelanoma diagnosis history blocked entry

Feb 19: Melanoma Wide Excision Biopsy surgery – no signs of Melanoma/surgically cured!

Jan 21: Surprise Melanoma diagnosis (Stage 1)

Jan 13: Adventures in Living Terminally Optimistic blog started!

2014

Oct 1: Started 5-FUAvastin (bevacizumab) “chemo light”

June 19: Officially declared Stage IV recurrent CRC – Mets in lymph nodes and lungs

2013

Aug 16: First signs of “potential concern” on CT-scan 

2012

July 2012 – Jan 2013: 6 months of FOLFOX and FOLFIRI chemo

June 4,  2012: Diagnosed with Stage 3C CRC

16 Comments on “LATEST

    • How to contact with TOM? I am a late stage colorectal cancer patient with lung mets, KRAS mutation and MSS. I will start to have my chemo treatment soon, but not sure if I should use Avastin now. TOM didn’t use Avastion, either. I want to know why. And should I use some immunogenetic medicine at the same time with chemotherapy? Thank you for your help. urgent!!

      Like

      • Hi Engrid, I have (and currently am) using Avastin in combination with FOLFIRI. It has little to no proven clinical activity in CRC as a single agent without combination with chemotherapy.

        Like

  1. Pingback: An Unexpected Love of Writing Expands in Two Hemispheres | AdventuresInLivingTerminallyOptimistic

  2. Pingback: An Unexpected Love of Writing Expands in Two Hemispheres | AdventuresInLivingTerminallyOptimistic

  3. Dear Tom Marsilje,

    Found you through the the CRC newsletter. I was diagnosed last year, and when my nurse told me I could go out and eat at Denny’s two days after surgery, I started researching. Turns out that most of us can halve our risk of recurrence doing very reasonable dietary change (lowering red meat, lowering sugar intake, adding aspirin, etc.). I wrote up the simple version as The Colon Cancer Diet, but you’d likely be more interested in the sparse background research, which I’ve posted by chapter on my website: naturopathicmaine.com.

    Yes, prior to my diagnosis, I was and am a Naturopathic doctor, someone who started in chemistry and physics and started looking for solutions to MRSA and VRSA in the plant world.

    So I brought that viewpoint to my diagnosis of CRC, and began researching from sort of the opposite end of what you’ve been doing (fabulous stuff, by the way, though I expect your insights go right over the head of most readers due to the technical nature of discussing drug trials). I’ve been looking at outcomes from lifestyle rather than drug trials. One of the things I found most interesting was the inflammatory response caused by over-exertion and how that supports cancer growth. I know that it’s been a godsend to you for morale, etc. but what I found supported more mild exercise. Even so, I find myself running rather than walking because it feels better.

    I’ve also been fascinated by the John Hopkins study of biofilms and colon cancer. From other work I’ve done on the microbiome (in a booklet called Tending Your Internal Garden), it’s absolutely clear that variations in bacterial growth can both enhance or inhibit colon cancer. The current hypothesis is that any one dominant species, even a benign one like lactobacilli, will produce carcinogenic compounds to enhance its own species’ growth without any concern about us.

    In your case, with your dual diagnosis, I’m wondering if you’ve looked at the studies on melanoma and applied those in any way. In my own research, I found an association between beta-carotene and melanoma, then had contact with a raw foodist who had reversed his metastasis (confirmed by multiple testings in Boston) by that lifestyle. And yes, he did turn orange in the process.

    I really appreciate how you are pushing the envelope for yourself and others. For me, getting diagnosed meant moving to a fairly stringent lifestyle. From your exercise routine, I’m wondering if you’ve also adopted very restrictive dietary habits. I think it’s important to maintain the body, if only as a buffer to extend your reserves to allow for longer trials, and I wonder if you have shared your routine with readers here or on CRC.

    With respect, a fellow colon cancer “careful” person (I don’t like the term survivor),
    Christopher Maloney
    (feel free to email me back instead of posting: docmaloneynd@gmail.com.)

    Like

    • Hi Chris – thank you for your post.

      As you can see in my favorite books list link, I include The China Study & Anti-Cancer a New Way of Life. When I am not on chemo, I am vegan with a focus on functional foods. – while on chemo, I am unable to maintain weight on that restrictive of a diet.

      I certainly personally believe that lifestyle choices have the potential to impact the aggressiveness of the disease in at least some patients, so I try to use it as one weapon in addition to the other therapeutic weapons I employ (chemo, clinical trials etc).

      Cheers,
      Tom

      Like

  4. On March 10, I watched your CR interview; twice. I was previously unaware of your work but I became mesmerized by you. I subsequently immersed myself in your blog. You are so factual and informative as well as a ray of hope. I think you are more “healthy” than others not inflicted with cancer (like me, at least yet).

    Although we can’t choose our own genetic blueprint, we can study healthy lifestyles, filter out the hype as best we can discern, and try to incorporate what makes sense to attempt health in the presence of a disease or to prevent disability. There are all sorts of theories and many biased studies; it is not easy to decide what may work for any individual, and as time shows, we could go down the wrong rabbit hole. When one is sick and more desperate for wellness, smart judgment can be clouded. I don’t know what any one person’s “purpose” in this short life may be, but you are a testimony to a life’s purpose in education and hope. You are providing such a service. I hope so much for you. Thank you.

    Like

  5. hi there

    hi i am con, medical technology engineer, running a small company (prototyping, designing, engineering bioreactors for tissue-engineering, surgery-tools-prototyping, lab-devices, electronics…) in switzerland, close to basel area.

    i also was diagnosed with mCRC in early 2014 at an age of 30 years this time. so both of us are somehow “young onset” CRC’s. i have a BRAF-mutation, and no other mutation, but a MYC-amplification and i am considered as MSS, like you. in literature, it is written, that often BRAF and MSI do correlate, in my case it does not seem to be the case. so i am fighting for 3 years now, and i started following your blog, because somehow we are very similair: we work in the life-science world, and on top of this, both of us carry this bloody “CRC-alien” around. i have the same opinion like you: panning a lot of scenarios, in order to be prepared. more plans than disease is the best. of course i also follow the literature about the PD-(L)1 and the maraviroc-study. this was done in heidelberg, germanny, which is very close to my place.

    because i’m medical technologist, i knew about the possibility of liver-metastasis treatment using RFA but percutanous, CT-guided and on top multi-needle-approach. i did that 2 times until now, so i have all the 3 main-vessels in my liver still open. i decided to treat my disease with minimal-invasive technologies, which are repeatable, and this is why i most probably survived until here. now i also have a bunch of lymphatic nodes spread in my mediastinum. the small liver-lesion (on top) will be radiabalated. the bunch of lympatic nodes i plan to keep for some weeks, in order to get a PD-1 tharapy on top of the already planned MEK-inh. + BRAF-inh. + vectibix triplet therapy. the aim is to combine irradiation with PD1. my favorite would be atezolizumab. seeing, that a MEK-inhibition is needed for immunotherapy in our MSS-cases, but the targeted receptor is located on the immune cells, i do not expect heavy adverse effects combining this PD1 with the already mentioned MAPK-inhibition-plan. the same seems to be true with the approach you are doing with the CCR5-blockade, maraviroc.

    i read a lot of literature about the combo irradiation + immunotherapy. probably this could be an interesting path for the 2 of us. unlike thermal ablation, an irradiated lesion produces a lot of “vital” antigenes, which may be better detectable by dendirtic cells and other parts of the immune system. on top of that the irradiated area produces a lot of inflamation molecules, which attract the immune system. like an internal sun-burn…

    here in the region of basel, we have a clinical trial running: this could probably help you: a conjugate of a small bead which is radioactive. this could be a “systemic” treatment for the liver with a lot of small lesion, like you described.

    how do you “feel” with the maraviroc + the therapy you are doing currently? can you manage the side-effects well?

    i would like to contact you in order to exchange our opinions, plans and especially our results. both of us are doing trials with N=1, in order to save our lives. i would be happy to discuss our aproaches and learn from each other.

    could we get in touch via E-mail?

    i whish you a lot of force, and low side-effects!

    con

    Like

  6. hi tom

    thanks for your quick answer! the issue is, that i do not run any facebook account. this is why i asked you for e-mail contact. is there also another channal like wechet or whatsapp you use?

    i will start reading the colontown-post right now! thanks!

    i will try to convince my oncologist also for the maraviroc approach. she seems to be impressed by it. she already tried to figure out which mutations/circumstances must be given to get success based on CCR5-blocking. have you already an idea about this?

    the last enty on following PDF could be an interesting approach to think about, according the post, you made about your liver-CT.

    https://www.unispital-basel.ch/fileadmin/unispitalbaselch/Bereiche/Medizin/Onkologie/Lehre_Forschung/Studienu%CC%88bersicht_17.11.2016_UHBS_.pdf

    have you ever heared about that?

    here the link:
    https://clinicaltrials.gov/ct2/show/NCT02053324

    cheers
    con

    Like

    • Con- I tried your email – bounced back. But since I work with 1000’s of people, my bandwidth for email is basically non-existent anyways… All I can advise is to get a Facebook & Messenger account – it is the center of all my science based advocacy (if you want to interact with me). You don’t have to post anything to Facebook (maintaining your self privacy), many people just use their memberships to access my advocacy tools….

      Like

      • hi tom

        ok, i will create such an account soon… of course i would like to interact. especially the maraviroc-approach: probably we can do N=2 together!

        Liked by 1 person

  7. hi tom

    account created. i requested a friendship with you. i am not expirienced how facebook works….

    how ever: i am currently also making many plans to move on my health-issue.

    https://www.clinicaltrials.gov/ct2/show/NCT03018405?term=cart+colorectal&rank=6

    this study contains an approach with CART-cells. how do you think about this? i read many papers about this. i have the paper here: NKG2D is the type of CART cells mentioned. this matches with the study.

    con

    Like

  8. I love (!?) the term cancer career … ain’t that the truth!
    Its better than no career, but I still, almost 5 years into it, can’t embrace it.
    I am off Vectibix, as it stopped working, and I am having a considerable de-tox,
    which nobody told me about. My nail beds are extremely inflamed, my skin is dryer than ever, and hand foot syndrome has returned. So, I am wondering about side effects
    in an immunology trial.

    Like

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