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My Husband's journey with Glioblastoma
I have been following discussions in this Brain Tumor group for several months and decided it was time to share my husband, Steve's, journey with a GBM diagnosis. On 10/25/2019, after one short week of headaches and some confusion....thinking Tuesday was Friday, starting to take the wrong exit off the highway....I asked him to see a doctor. On Friday, 10/25, he went to the ER where they did a cat scan and found a mass in his brain. An MRI confirmed a right frontal lobe mass. Surgery was performed on 10/28/2019 after which we learned he had Glioblastoma (WHO Grade IV), IDH1-Wildtype with MGMT promoter methylation absent. The surgeon said he had removed the entire tumor, which luckily did not affect any functional areas of the brain. He underwent six weeks of radiation M-F, along with daily Temozolomide chemo pills. He had no adverse reactions to either. Unfortunately, an MRI on 01/24/2020 showed a recurrence. We were told that because his tumor was not methylated, the temozolomide often does not have success. So Steve underwent another surgery on 2/13/2020, where once again the entire tumor was removed. The plan was to start maintenance chemo pills...but still temozolomide. However, swelling in the brain took Steve back to the ER where it was determined he was taken off steroids too quickly. To our shock, an MRI taken on 03/08/2020 showed the tumor had returned yet again!!! We said "no more surgery" as it obviously keeps coming back. It was decided to try the Optune Cap through Novocure and receive every other week treatments of Avastin, a chemo drip. I also heard about a book called "Radical Remission"...How to Beat Cancer Against All Odds, written by Kelly Turner. The best chapter in the book is the one on diet. I learned that "sugar feeds cancer". My shopping now has me reading labels. The book says to avoid anything with added sugars. Don't eat fast food, or processed meats. I buy everything I can find with low sodium or no salt added. We eat lots of fruits and vegetables and only sprouted grain bread. The book also recommended drinking Essiac Tea, which is made of eight organic herbs that are pesticide and chemical free. Check the website http://www.discount-essiac-tea.com to read the multiple testimonials from individuals with cancer. Steve has had MRI's on 06/01/2020 and 09/18/2020 each showing a continual decrease in the tumor size. On 03/08/2020 it measured 5.8 cm x 4.7 cm. On 09/18/2020 it measured 2.3 cm x 1.6 cm. He continues to wear the Optune Cap more than 85% of the time, plus the Avastin, the Essiac Tea, and the diet and lots of prayers from family and friends. We aren't sure exactly what is working so aren't willing to stop anything. We remain cautiously optimistic.
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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.
@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.
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1 ReactionCollin, 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.
I appreciate the information and plan to watch it! Thanks.
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. 🙂
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. 🙂
Don't know. I am trying to find out through his Oncologist. I hope he doesn't or if he does, that it is defective.
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1 ReactionHolding hope in my hands with you, @otis123. Please remind me, does your husband have the Pten gene?
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1 ReactionThe first Lomustine treatment was 4/2/2021 and, so far, no side effects at all. An MRI is planned for 5/11/2021 to see if any changes before the second treatment is given. The plan is to take 230 mg every six weeks. There was a recent article talking about a new drug that could be game changing for brain cancer treatment.
Here is the link: https://www.theguardian.com/science/2021/apr/11/early-findings-show-new-drug-could-be-game-changing-for-brain-cancer-treatment It says patients with a defect in the Pten gene could benefit the most.
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