My Husband's journey with Glioblastoma

Interesting, Collin. May I ask what nutrition/diet is your father following? Did you and your family consult with an oncology dietician for guidance?

Apologies for interjecting again, but I believe I have some more information that may help. I recently came across Thomas Seyfried's research on cancer. He explains that cancer is a metabolic disease and suggests that effective cancer treatments would target this altered metabolism. I would highly suggest watching "Thomas Seyfried: Cancer: A Metabolic Disease With Metabolic Solutions" on YouTube. He passionately and elegantly explains the origin and driver of cancer on a biological and mechanistic level.

He suggests a "pressure-pulse" approach to cancer treatment where metabolically targeted therapies would put "pressure" on, i.e. slow down the progression of the tumor and weaken it to other "pulse" therapies that would then exert their direct anticancer action with greater effect. This could be added on top of current therapies. For instance, Lomustine could likely be used as part of the "pulse" of anticancer treatments in this approach. Many metabolically targeted treatments are cheap and require no prescriptions (i.e. ketogenic diet, calorie restriction, fasting, supplements that inhibit glutaminase's conversion of glutamine to glutamate). Anyways, just a suggestion. I hope this helps. This is currently the approach we're taking with my dad. 🙂

Hey Colleen, sure thing. My dad's on a calorie-restricted ketogenic diet and we just started doing 16-18 hour daily fasts in addition. We're also looking to make it more natural, unprocessed, and plant-based. Its a bit of an intersection of everything that we think may help. And yeah, we've been in touch with a couple oncologists about it. One is of the opinion that a balanced diet is the only point of emphasis he'd make, but he's permissive of our decisions. The other is supportive of the idea of using this diet to target the metabolism of cancer cells. Of course none of this is rigorously proven to help, but I think in the absence of sufficient proven treatments its the best we have. It sounds like a lot but we've eased him into it and his body has grown to expect less. He's doing very well and its helped him lose some weight. Its hard to tell what's been helping him since we have him on a lot but he's still getting stable disease MRI's (7-8 months from GBM diagnosis) which makes me happy. 🙂

Collin, I'm familiar with the benefits of low-carb, healthy fat eating and intermittent fasting. Did you know that there is a support group dedicated to it here on Mayo Clinic Connect? See here:

- LCHF Living & Intermittent Fasting https://connect.mayoclinic.org/group/lchf-living-intermittent-fasting/

I hope you and @otis will join the discussions there as you learn and to share info with others.

@otis123 No problem. 🙂 @Colleen Young Thanks, I'll check it out! As I've done more research on cancer, I've found this similar kind of diet aids in treating all sorts of chronic diseases. I'm still learning, but it seems to be a really undervalued part of health and disease focus. Which makes sense that food would be one's greatest medicine as it dictates most of the mass and biological processes that constitute our beings. Also- another speaker on this ketogenic diet for brain cancer is Miriam Kalamian. When her son failed on all standard therapies, she started him on a restricted keto diet which they eventually made his sole therapy. During this time his tumor shrunk then stabilized, buying him 5-10 years before he died of other complications. Finally, Guy Tenenbaum had another kind of stage 4 cancer, along with type II diabetes, hypertension, high cholesterol, joint and bone pain, chronic inflammation, and weight problems. A similar strict diet eventually became his monotherapy along with serious fasting and he's now free of all these ailments and doing well. As for my dad, he's lost 20 pounds, experienced less anxiety and has a more clear mind with no lingering deficits or side effects. I really think there's something to this and I hope time proves me right.

Collin----can you give me an idea of your typical "grocery list" or a few meal combinations that you use frequently for your Dad? For the last year, I have been buying sprouted grain bread, eliminating all white breads and pastas. I stay away from fast food, anything processed, avoid anything with added sugars and buy things with reduced sodium. I also eliminated most dairy except for cheese and plain Greek Face yogurt. We eat almonds, walnuts, flax seed, avocado, berries and green vegetables. I think what I am doing is a good start, but the Ketogenic diet seems to say to avoid all breads, pasta, and any carbs, which would also mean crackers, pretzels, etc. I try to avoid all desserts, but my husband is one who loves and craves everything he shouldn't. I'm thinking skipping dinner periodically would accomplish the fasting you talk about. Just curious to hear a typical day or two of menu. Thank you.

Well things are not going very well for Otis. I wish I could find a good drug, trial or otherwise, for a non-methylated tumor. He is now on carboplatin, but I am not very encouraged that it is working. He has an MRI on 8/5/21 and if the tumor is not stable or shrinking, we will need yet another option.

Well things are not going very well for Otis. I wish I could find a good drug, trial or otherwise, for a non-methylated tumor. He is now on carboplatin, but I am not very encouraged that it is working. He has an MRI on 8/5/21 and if the tumor is not stable or shrinking, we will need yet another option.

Hello @otis123

How is your husband doing these days? Is he showing any improvement? How are you doing?

His latest MRI of 8/5/2021 shows progression of the cancer. There is one more chemo that we can try if he can avoid side effects. It's Irinotecan. The Oncologist doesn't seem very positive about its effectiveness. Otie is showing signs of memory and cognitive thinking issues. It breaks my heart. There doesn't seem to be anything that has a chance of working on a non-methylated glioblastoma. If anyone knows of anything, we are at the desperation stage.