ABOUT

IMG_4045My name is Tom Marsilje. Ironically I am an oncology researcher who was surprise diagnosed with colon cancer at the young age of 40 – adding to the irony, only 6 hours after a now FDA-approved cancer drug I helped co-invent with teammates was first presented at ASCO-2012.  I am currently 44 and LIVING with Stage IV disease. The picture is from my first ever team triathlon, taken AFTER my Stage IV diagnosis.  This blog is meant to give occasional updates of the various twists and turns my cancer path takes me in the coming years. Having a unique perspective as an oncology drug discovery scientist and patient, I also would like to use this blog to informally “talk oncology science” to the layperson (which I find fascinating and I hope you do too after reading it! :) ) as well as to describe the “patient experience” to my fellow medical research scientists.  I believe hearing about recent advances in oncology research can be inspirational to my fellow cancer survivors & hearing about the patient experience can be inspirational to my fellow scientists!

To the right & on the page bottom you’ll see a “most recent posts list”. I also have a “Favorite Posts” page.  There are Español (Spanish) Русский (Russian) , Česká (Czech), and  中文 (Chinese) versions of the blog as well – to try to spread its message of Hope and information to as many people around the world as possible.

If you want to read an “introduction post” (ironically via China) – it is here.  I will be keeping an updated page called “The Latest” devoted to upcoming significant dates, tests, procedures etc. since I know many people are curious to know that info. For the latest CRC scientific news and info I use twitter @CurrentIncurSci as well as my public Facebook account. My Wechat account is Tom_Marsilje.

I’m proud to be partnered with The WunderGlo Foundation for rebroadcast of my English blog on their website.  It was a natural fit – we both strongly believe in both integrative healthcare & working to CURE CRC.  I’m proudly partnered with Red de contacto para personas con cáncer de colon (Argentina-based) for my Spanish-translated blog, since they advocate for early onset CRC, another strong cause of mine.

I believe strongly in patient advocacy and am a 2016 national spokesperson for early onset CRC via the national patient advocacy organization the Colon Club.  With advocacy goals in mind, I also currently write a regular science column for the national CRC patient advocacy organization Fight Colorectal Cancer called “The Currently Incurable Scientist“.  It explains the science of experimental therapies currently in clinical trials for CRC in layperson’s terms – once again with a goal to be a unique bridge between my intertwined worlds of cancer patient-scientist-advocate. Finally, I currently represent colorectal cancer on The Cancer Research Institute’s (the world’s oldest & largest immunotherapy advocacy group) patient portal website “The Answer to Cancer” to help spread awareness of immunotherapies, one of my most passionate causes.

I am both an eternal optimist watching the incredible progress in oncology research, as well as facing “currently incurable” Stage IV CRC.  In other words, my life is currently “The Adventures in Living Terminally Optimistic”.

To Life!

 

41 Comments on “ABOUT

  1. Hi Tom, My name is Dave Bangert. I am one of the early investors in Kinex and I got your information from David H. My wife was diagnosed with stage IV Gastric Cancer this summer, I actually refer to it as stage exit. Like your situation, ironic doesn’t begin to describe how we feel.
    Would you mind sharing any information on the elements of your attack on cancer. We have been working with faith, nutrition, supplements and diet as extra weapons for us.
    God Bless!

    Liked by 1 person

  2. We’ve heard a lot of wonderful things about you through our friend James C. and look forward to following your blog!

    Liked by 1 person

  3. Tom, finding you inspiring and a wealth of information. Sincere thanks.

    Have you looked at Acelarin, which is already providing clinical benefit for patients across a broad range of solid tumours in the completed Phase I/II study at the Hammersmith Hospital, Imperial College in London?

    Like

    • Hi Jim, I am glad you enjoy the blog! I wasn’t familiar with the drug you mentioned so I did some searching this morning on clinicaltrials.gov and unfortunately it does not look like it is being developed for colorectal cancer…

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      • Thank you very much Tom for checking. My wife has just had bad scan results showing further mets and I have desparately searched for more we can do. I was hoping that this was another line of attack, but now realise that they are initially focusing on pancreatic cancer in the latest stage 3 trial.

        Reading your latest blog about your charity run was helpful. Will be supporting my wife through the next stage of our journey and never losing sight of living life to the full.

        Take care, Jim

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  4. Hi Tom, really appreciate you taking the time to reply and apologies for wasting any of your precious time. My wife’s scans have just shown lung mets on top of the existing one on her liver. Therefore, I was desperately searching for any other line of attack. An article I read here raised false hopes http://meetinglibrary.asco.org/content/133450-144.

    However, It has helped me reading your latest posting about your runathon. We are staying flexible and focused on life too. Have just enjoyed a golden summer.

    Will continue in the race for life! Gaining lots of hope and control from a range of complementary treatments. These include fasting for over a year around each chemo cycle (based on Valter Longo’s work), mistletoe therapy (widely used in Germany) and being part of a private case study trial (re-purposing some common drugs with proven anti-cancer benefits, such as statins and metformin). Happy to share any information about these, if you are interested.

    Take care, Jim

    Like

    • Keep continuing on that race of Life! I am a big believer in complimentary treatments that have a scientific basis and as long as your MD is fully informed! I have done many of them myself! All my best to your Wife and you – Tom

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  5. I too am a stage IV colorectal patient. I had a colonoscopy in early November which could not be completed because of the tumor. I had surgery on Thanksgiving day in 2013. The mass was successfully removed. It had metastasized to my liver. I did a few rounds of chemo, then met with a liver doctor, the lesions were spaced very far apart. They did a liver block and also placed radiation beads directly on the liver. My liver doctor scheduled surgery to remove part of the liver. I went for pre op and they discovered mets to my lung. I am currently on my 8th round of six treatments, then scan. All if my scans have shown no new tumors and no growth. I am doing what I have to do. I have way too much to live for. I try to pick a positive in each day and have fun when I feel good. Your blog is inspiring. Thank you so much for sharing.

    Liked by 1 person

    • Hi Belinda, Thank you for your message. I wish we had met under different circumstances but I am glad you enjoy my blog & find it inspiring. It is comments like that that help fuel my own fight! I love your line “I have way too much to live for. I try to pick a positive in each day and have fun when I feel good.” – that is a GREAT way to approach life! Wishing you all the best, Tom

      Like

  6. Great blog and thanks for all you are doing. Would love to share my story with you–stage 4 fighter. check it out at terigriege.com and poweredbyhope.org
    will send you my book if you give me a mailing address. thanks, teri

    Liked by 1 person

    • Hi Teri – Thanks for commenting/contacting me. You have a very inspirational story and have done wonderful things as an advocate to bring Hope to CRC patients! I know you are a fellow Wunder’s Warrior – I would love to talk further. I just sent you a FB friend request in order to hook up! Cheers, Tom

      Like

  7. HI l love your site! very inspirational!!! I got stage 4 colon cancer myself and your terminally optimistic attitude is giving me new energy. Christine

    Like

    • Thank you for the comment Christine! You getting new energy from my writings helps give me energy! Best of luck to you on your journey! -Tom

      Like

  8. Hi Tom
    Just found your article. Inspirational stuff.
    I am on the Stage iv journey also with mets to lungs and liver. Surprise diagnosis in September 2013. Started with FOLFOX6 which showed great results til the body started to hate the Oxally! 12 months on DeGramont, stable for a while then regression. Now on FOLFIRI (1st one today).
    Am still working full time, some days from home, employer has been great.

    I look at every situation now and try to find the silver lining in it. Works well to keep family and friends positive on the journey with me.
    Iain

    Liked by 1 person

    • Hi Iain, Thank you for reaching out and sending the comment! Good luck with your treatments – I don’t know if you subscribed or not but I wrote a post today I think perfectly timed for you: “Time to Tread Some Water”. Take care, -Tom

      Like

  9. Hi Tom! Wonderful blog, great niche. I’m thrilled to have you as an oncology researcher with a focus on this newish young onset phenomenon. I’m curious if your research delves into young onset or if you focus on finding new cures regardless the age of the cancer patient. Heck, your research may not even be on colorectal cancer at all.

    I’m an advocate for raising public and professional awareness of young onset crc and other ways to make changes that will result in those with young onset crc being diagnosed much earlier. I’m sure you’re personally aware that, like you, most young folks are diagnosed at Stage IV.

    And let me say I’m thrilled you’re doing so well. And thanks for taking time to write this blog with its unique perspective.

    Laura

    Liked by 1 person

    • Hi Laura,

      Thanks for stopping by and more importantly your work to raise awareness of young age/early onset CRC! Along those same lines I am working with the Colon Club as a 2016 Colondar 2.0 model to raise awareness! I don’t discuss the details of my research on this blog but it has included a number of cancer types over the years, the portion of my research which has been published can be found on pubmed.com.

      Thanks also for the compliments – I am glad you enjoy my writings & message!

      Cheers, Tom

      Like

    • Laura,

      Also believe in earlier testing for Colon cancer. In my years fighting Colon cancer I have seen many young people diagnosed as young as 15 with Stage IV. I am a strong advocate for early testing with a product like Cologuard that is easy and non-invasive.

      Like

  10. Fantastic post but I was wondering if you could write a litte more on this subject?

    I’d be very grateful if you could elaborate a little bit further.

    Cheers!

    Like

    • Hi Whitney, I you could more specifically write which subject (I write about many of them) you would like to me elaborate further on, I’ll do my best to fulfill your request! Thanks for reading the blog!

      Like

  11. Dear Tom,

    It was very encouraging to read your story. It gave me many courage and strength to take care of my husband, and understand his world. He was diagnosed with liver cancer and later found metastasized to his lung. I wonder if any therapy will work for his disease?

    Thank you and all the best wishes to you.

    Like

    • Dear Terry,

      I am glad my writing brought you courage, strength & understanding. I’m not a MD so I can’t give medical advice re: your husband’s liver cancer but I do sincerely wish him the very best!

      Take care, Tom

      Like

  12. Tom,I just started reading your blog so haven’t read to many post I also have stage 4 colon cancer with it in the omentum and at the colon resection sight I’ve been checking into HIPEC had a counsultion with Dr.Loggie in Omaha but want more information so my Dr. Tried to get me counsultion at MdAnderson but they said their not doing for colon cancer patients now. Wondered if you had debulking surgery ? Or HIPEC ? Do you feel that having surgery is best to try to get it out or what your personal opinion is ? On Dec.2013 I had colon resection my lympnodes all checked clear meet with oncologist he said he could cure me , well June 2014 clear scan yippy so happy , but since at least Feb.2014 had been telling doctor of light pains always was a strengther ,well Dec.2014 stage 4, been on lecaflorain?,avastin ,&5fu for over a year now,and today I found out my doctor is leaving to another hospital , Please give me any of your knowledge that could help me in this fight🙂

    Like

    • Hi Bridget – Thanks for checking out my blog & commenting. I’m not a MD so I can’t give medical advice but in general, I think you should definitely explore what your surgical options are with surgical consults. If you were caught up in the MD Anderson computer system switch over, that problem is supposed to be resolved in about 1-2 months I think, allowing new patients once again at that point (that is what I heard). For HIPEC, Dr. Andrew Lowy at UC-San Diego is a world expert so you could discuss with your MD perhaps getting a consult with him. The only surgeries I have had personally are the primary tumor removal and a few lung RFA procedures. Good luck and keep up the fight! -Tom

      Like

      • Thanks,Ill try to talk to my doctor when o get the pump off thanks again🙂

        Like

  13. Awesome things here. I am very happy to peer your post.

    Thanks a lot and I’m looking forward to contact you.
    Will you kindly drop me a e-mail?

    Like

  14. Greetings from Canada, Tom! I stumbled upon your blog while doing some research for my own (Trish2dot0). I came upon you in the Colon Club web pages. Your running and triathloning caught my eye as my life before cancer was chock a block of IM. I’ve decided to save my joints from the abuse. Nonetheless, I totally love your posts and am happy to have found a scientist on the front lines of research and uniquely motivated to find a cure. Keep well and I’ll keep following you. Trish

    Liked by 1 person

    • I’m glad you found & enjoy my blog Trish! I’ll keep well & you do the same! My next Team Triathlon is May 1st. I’m in the thick of FOLFIRI right now so I will not have an impressive time – but the act of doing it and finishing it – is my way of telling Cancer I don’t plan on backing down anytime soon… Take care, Tom

      Liked by 1 person

  15. Tom, please call me at 6073820424. I have stage4 CRC and been alive so far for 14 months with a spot on near the spleen area. I am a runner also and looking for mass types. I also did the molecular testing from foundation one and discovered the erbb2 amplification which is what makes many mass cases so aggressive. Feeling all alone with this and frightened. I am only 48 yeasrs old. But I know exactly what chemically caused all this and looking for help with my ideas regarding research, etc.

    Like

    • Hi Pat – I’m sorry to hear that you are facing Stage IV CRC and feeling along too. There are some great online support groups I can point you towards. I’m glad you got molecular testing done. I shot you an email. Take care, Tom
      PS I’m not sure you want your telephone number listed here for spammers – I recommend you edit your comment to remove…

      Like

  16. Dear Tom,

    Your blog is wonderful. Its so good to hear that you are doing well.

    I wish to suggest few alternative therapies you could try if interested.

    Daily Meditation and self affirmations of good health are helpful.

    Please do try alternative therapies like Naturopathy, if you are interested
    There is a herb called Ashwagandha which is recommended for cancer cure. A tea-spoon of its powder with warm milk daily is helpful.
    http://www.denvernaturopathic.com/news/ashwagandha.html

    .
    Uropathy under naturopathy stream is also effective. http://www.healingcancernaturally.com/urine-therapy-cancer-cure-testimonials.html

    Wishing you good health and good cheer! Bless you!

    regards
    Jay

    Like

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