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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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Was Keytruda mentioned at all as part of your treatment?
KEYTRUDA® (pembrolizumab) - Official Product Site
That is was I am on at Mass Gen. Dana Farber’s Doctor is running the protocol which MG with part of.
I know I am bombarding you with questions, but I have a few more. How long have you been on Keytruda? Have you had any MRI's since you started? If so, did they show a decrease in your tumor size? Upstate University Hospital in Syracuse, NY, had suggested Keytruda as the next step before I headed to NC for a consult. I have written to Otie's Oncologist with the details you gave me to see if she was going to use the exact same thing. Thank you so much for talking with me. You are very helpful!! Don't go away!!
I was diagnosed with a Glioblastom in July 2020 and the tumor was removed at Mass General by William Curry. We did MRI every other month using Abemaciclib. My wife says that the study close now. Then a second smaller
tumor was found this past December by Mass General and we started see if i were eligible for infusion therapy- I was. I started last month.
Dr Curry removed the second tumor last week and I’m on the mend. I can’t say enough for the care I am receiving at the Mass Gen. We live two hours away from Boston so it’s that not fun but given now I have to to an ifusion every 3 weeks it’s nice to not have to fly in to appointment. Begin close to treatment is as plus and long as it’s a good hospital with access to the latest trials. We started off at a local hospital who said they could it the Friedman say don’t go - go to Mass General.
FYI - Dr. Friedman was that one that recommended Dr. William Curry at Mass General to us
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1 ReactionI'm sure you read the details of my husband's journey with Glioblastoma, starting with his first surgery 10/28/2019. His second surgery was 2/13/2020 after six months of temodar and radiation treatments, which everyone says is standard treatment. He wore the optune cap and had every other week infusions of Avastin (Bevacizumab) from mid-March through December 2020. His June and Sept. MRI's showed a decrease in his tumor, but the Dec MRI showed it has started growing again. That is what took us to Duke. The folks at Upstate in Syracuse have been wonderful so far, and I am asking our Oncologist to help with determining what is best for the next step---Lomustine or Keytruda. I am trying to read as much as I can to educate myself on the clinical trial results of each to help figure out which to do. It's hard. I wish you all the luck with your current treatment. I will let you know what we decide. Let's stay in touch!!
I was unsure and confused after trying to research information on keytruda and lomustine yesterday. Steve's (nickname Otie) oncologist called me at 7 p.m. yesterday and we talked on speaker and made a decision. He is definitely going to stop using the optune cap, since the tumor grew while he was wearing it. He will restart Avastin (Bevacizumab) an infusion every other week and begin Keytruda, a chemo pill. He will also have about 10 more radiation treatments. I was concerned the keytruda would not work because of his two prior surgeries, but the doctor said that there is new growth and he is not having a 3rd surgery so it should work. I had read that keytruda awakens and attacks dormant cells.....cells that would be lost if a new surgery is performed. Hey... we have to trust the decision and continue to pray this stops the growth and decreases the tumor for awhile. May all of us have some good luck in 2021 !!!
Hi Otis and everyone, I came across this thread when researching Essiac and figured I might respond with some things that may help. My dad is 5 months into his GBM diagnosis and is doing well so far, with only fatigue as an ongoing symptom. I feel much anxiety even with one follow up MRI showing minor improvement, I can only image what some people here must be feeling.
I wouldn't want to dissuade anyone from a clinical trial or any other treatment, but there's a legitimate argument to be made that adding the right supplements onto other treatments may help. While some would argue that supplements could potentially interfere with other therapies (which is true), how does that compare with how likely they are to help, particularly with a bit of research into safety and interactions? Effective treatments don't necessarily have to be expensive, and each one is a chance at something better.
There's one study in the PMC of five patients with GBM where one died at 48 months and the rest are still living, taking herbal medicines. You can google "Treatment of glioblastoma with herbal medicines" to find it (not allowed to post links, sorry).
Also have you heard of Joe Tippens' story with Fenbendazole? I recently came across it and find it very interesting. Amusingly, Fenbendazole is a canine dewormer that is gaining traction for repurposing with cancer. There's a human version of this drug, Mebendazole, which appears to also be proving itself as an interesting candidate for cancer therapy. Mebendazole is also included in the COC protocol, a regimen of 4 repurposed drugs for cancer treatment also with promise.
There's many cheap, widely available, non-toxic supplements worthy of consideration like curcumin, melatonin, fish oil, ginger, garlic, boswellia, etc. In isolation any individual agent is likely to fail to overcome the many growth pathways present in cancer, but combined there is reason to hope. It could be that Optune was helping but wasn't enough on its own to stop tumor progression. Also have you heard of the film Surviving Terminal Cancer? It's specific to GBM and would highly recommend. I wish you all the best.
Thank you for your message and suggestions! I really appreciate the references you suggest checking out. I definitely will research all of them. Otie is still drinking Essiac Tea, and I am diffusing Frankincense for 2 to 3 hours a day, which has the ingredient boswellia. You may be right about Optune, but the the cost of it is very high, and insurance companies argue paying when you are taking other drugs like Keytruda w/Avastin. It's a scary road for sure, especially when he is 15 months since diagnosis...feeling fine, but we know the cancer is growing and need to find something to, again, stop it in its tracks, even if for awhile. We are hopeful, and in the meantime, I will continue to research. You have been very helpful!!
Hello @collinv and welcome to Mayo Clinic Connect. Thank you for sharing your experience and resources you've found to be helpful in caring for your father. I am sure @otis123 is grateful for a variety of different perspectives regarding care options for her husband.
Would you please share with us more about your dad's journey if you feel compelled to share?