Hi everyone, new here. My 47 year old brother-in-law was diagnosed in January with stage IV, BRAF 600VE. Mets to liver, small spots to peritoneum, CEA 37. He had virtually no symptoms, just a suddenly a little pale and flu-y. We were stunned at the diagnosis. He is one of the healthiest people we know.
As part of his support team (reading, research) I did so much searching for stories, and I wanted to share his story so far in return. Disclaimer: I'm not a scientist, direct caregiver, patient or medical expert. I have worked as a journalist covering health-related stories, but I'm not a professional researcher or particular expert in the health field. My only agenda here is to share what has so far been of help or comfort to him and his family, as determined by them.
He's consulted and continues to consult with MSK, U of M, and Detroit Beaumont, where he currently receives care. He's on round 6 of 5FU, scheduled for 12. He has tolerated therapy well, none of the legendary nasty side effects.
The part of his story I wanted to share relates to supportive therapies, diet and fitness. He is a fit and healthy guy to begin with, and is one of the 1 in 100 Americans who ACTUALLY eats 5 servings of veggies a day, works out, etc. This has helped tremendously in terms of his ability to withstand treatment; he has tolerated chemo extremely well, with just some nausea and fatigue in the days after.
One of my reasons for posting here is that even with his top-notch doctor access, suggestions and support for integrative therapies have been absent. They did recommend a Mediterranean diet, but one PA told him "eat what you normally eat; you need to stay strong and keep weight on. A milkshake after chemo is fine." To me, this was a red flag and seemed incomplete.
To complement his care, I researched and found some reputable, evidence-based resources that have been game-changers for him, including:
-Life Over Cancer: The Block Center Protocol for Integrative Cancer Treatment
-Anti-Cancer, by Dr.David Servan-Schreiber
-Anti-Cancer Living: Transform your life and health with the mix of six (by MD Anderson's Lorenzo Cohen)
I also connected him with Dr. Jen Green, the Research Director of KNOW, the Knowledge in Naturopathic Oncology She lectures on integrative oncology across the US and Canada, and she founded the Naturopathic Department at Beaumont Hospitals in 2008. He is her patient, and she put him on a specific protocol to support his treatment. According to him and his wife, this appointment was a game-changer, one full of hope, support, and concrete tactics. All of her suggestions were listed with links to supporting research and evidence and prescribed with the blessing of his primary oncologist.
Even with his pre-existing healthy diet, he made significant changes.
-No beef, pork or dairy, except for the occasional dinner out or treat
-Following a Mediterranean diet
-A once-weekly subscription to Sun Basket to help with prep
-Additional vegan protein sources/shakes to keep weight and energy
-Melatonin and reconfigured sleep schedule, to ensure maximum restful and healing sleep
-IV Vit. C weekly
-Turkey mushrooms capsules
-exercise (he already worked out 4-5 days a week, tennis, weights, cardio)
-visualization exercises (targeting the chemo to the tumors)
Of these, the sleep, diet, and Vit. C have seemed to make tremendous difference in how he feels, particularly the Vit. C's effect on chemo side effects.
When he told his oncologist that he was lifting weights, the doc actually swiveled his desk chair around and just stared at him.
He was also shocked that he has yet to miss a day of work.
My brother-in-law is remarkable, and his case is an exception. There's no doubt there are plenty of unknowns ahead and their journey with this is just beginning. But I wanted to share this information as I think it would benefit so many. It has not only helped my brother in law feel better than he felt at diagnosis, but it has given him and my sister a sense of hope, control, and concrete positive action. Their whole family is on board with the diet and exercise, and they walk the talk. He's optimistic, smart, and very very compliant. I think all these things matter. Above all, he's extremely hopeful, and he's living his life each day.
After 5 treatments, CT scan showed shrinkage and his CEA is now 4.6. Doc is discussing HIPEC options, TBD. Onward it goes.
Love to all of you in this community who get up each day, live your lives, and lift others up here in this forum.