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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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There is going to be a special event on the Lifetime Channel this Wednesday, December 16, 2020, at noon EST. It is entitled "Jeanneane's Life With Optune". Anyone with a diagnosis of Glioblastoma may want to tune in for more information on the Optune Cap.
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3 ReactionsWell I think the segment referred to above did not end up being on Lifetime. Here is the link if anyone is interested. https://thebalancingact.com/category/behind-the-mystery/
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2 ReactionsThe good news of the June and September MRI's in 2020 was demolished with the results of Steve's 12/28/20 MRI, which shows an increase in the tumor size. We are back to frantically trying to determine what course of action to take. The doctors at Upstate Medical Center in Syracuse are leaning towards another surgery to try to remove as much or all of the tumor they can. Following surgery, we need to find a new treatment....either immunotherapy or something in a clinical trial that has the potential for stopping the growth of the tumor. I am checking into clinical trials at multiple hospitals and want to include the Mayo Clinic to see if he qualifies for something. Can you help direct me? Thank you.
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2 Reactions@otis123 first, I am very sorry to hear of the results of your husband's most recent MRI.
I understand you are interested in including Mayo Clinic as an option for your husband. No doubt you will have questions about the diagnosis, treatment options and what will happen next. Experts at Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access Program.
Will you keep us posted?
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1 ReactionHello @otis123 I am sorry to read of your husband's difficult MRI results.
I am not sure if you are aware of the NIH's clearinghouse for clinical trials. If not you can follow this link:
https://clinicaltrials.gov/
Hoping for only the best.
Strength, courage, and peace
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1 ReactionThank you!
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2 ReactionsWhat I am finding is that prior treatment with Bevacizumab (which is Avastin) excludes him from most clinical trials. This is not going to be easy.
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1 ReactionMy husband was doing well with Mass General’s research chemo abemaciclib, 17 months after diagnosis of glioblastoma, but a new tumor showed up on his MRI. So he has been approved for research 16-225. He will undergo a second surgery and infusion of immunological drug every three weeks. He has had one infusion and will have the craniotomy by Dr. William Curry at MGH on January 12, 2021. This research has shown some promise. We have been blessed with Mass General.
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1 ReactionThank you! I will contact them this afternoon.
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1 ReactionEveryone I contacted has been wonderfully helpful. I received a phone call from Duke and am actively completing paperwork so that my husband can be scheduled for an appointment. I spoke with Dr. Friedman, who advised us against surgery. We are anxious to visit Duke and hopeful that they will guide us through the next steps in this journey. In the meantime, Steve feels fine and we remain positive.
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