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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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I am sorry if I gave the wrong impression. My husband can still take care of himself.He has aphasia so he has difficulty remembering things. He is no longer allowed to drive and has slowed down quite a bit. The new tumor has not affected him yet.
It has been a very rough few weeks. The re-radiation really took a toll on Steve's mobility, balance and short-term memory. He had to be increased to 16 mg of Dexamethasone (steroid) per day before starting to show improvement. An MRI showed a lot of swelling and also an increase in the size of the tumor. To compound issues, the Keytruda caused diarrhea and his other symptoms resulted in an urgency to go resulting in multiple "accidents". Due to the high dose of steroids, he cannot resume Keytruda, as they would counteract each other. He is still getting infusions of Avastin every other week, but it is very frustrating. Why is it that all these cancer drugs have to have such awful side effects.
A decision has been made to try the chemo drug Lomustine instead of Keytruda. Steve will start next week. Hoping he has little or no side effects from this treatment. We are weaning him off the steroids slowly and Lomustine can be given at the same time. When we went to Duke for a second opinion, Lomustine is what they recommended after he didn't quality for their other clinical trial.
@otis123 forgive me if this has already been shared with you, however, in the event that it hasn't I wanted to pass along the website where you can search for Mayo Clinic Clinical Trials.
Mayo Clinic Clinical Trials:
https://www.mayo.edu/research/clinical-trials
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1 ReactionI have seen the trials from a lot of places. The National Cancer Institute is in touch with me on a regular basis. As we found out when we went to Duke, all current treatment pretty much has to stop for the insurance to pay a new hospital who wants to do their own testing even though recent test results are shared. The one trial we hoped to get in at Duke was very promising, but he didn't qualify because of the makeup of his tumor. None of the other trials are enticing enough to stop current treatment. The doctors at Upstate in Syracuse are pretty on top of latest treatments and trials and have been very open to discussion options. It's not like this cancer allows a lot of time to travel the country. I think we are doing okay with our plan. At least Lomustine lists brain tumors as its first target to treat. Because it is taken orally, it should hit the brain quicker. We will just hope and pray it works and, if not, we will look for something else. Thanks for providing the website.
The 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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1 ReactionHolding hope in my hands with you, @otis123. Please remind me, does your husband have the Pten gene?
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1 ReactionDon'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 ReactionApologies 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. 🙂
Interesting, Collin. May I ask what nutrition/diet is your father following? Did you and your family consult with an oncology dietician for guidance?