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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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@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 ReactionThe 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 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 ReactionsThere 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 ReactionsWe basically do household cleanup on our "to do list". This week, we are cleaning out the garage so that he can pull his truck in before the snow hits us. When he is out there by himself, he seems to lose interest quick and comes back in. I have a lot of energy, so when I am out there with him, I keep him going. I do a lot of the organizing, etc., and call on him to either make a decision about keeping something or help me move something. He does his own thing in between. I bet we were out there for over an hour yesterday and are almost done. Today, he is going to sort his tools on top of his workbench in the garage. We have a lot of projects going in the house, so there is always something to do.
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3 Reactions@otis123 Your husband is recovering and on a positive track. Of course the "unknowns and the "how long" is scary. Despite this it sounds like you and your husband are thankful for every moment together and moments with family and friends.
It feels impossible to not take life for granted. I thank you for the reminder to cherish every moment.
It's good you encourage him to do an activity each day, despite his fatigue. It must be more challenging with Covid-19. May I ask what kinds of activities you do together each day?
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1 ReactionOne year ago today, my husband was recovering from his first surgery after discovering the mass in his head on 10/25/19. What a year it has been. Life certainly does change.....your daily activities, what you worry about, what you eat, what you pray for and coupled with this virus...Wow. He has come a long way and continues to feel good. His only issue is being tired all the time. I try to make him choose an activity every day--even if only for a half hour. We feel very fortunate to be here and on a positive track. The scary unknown is how long will the positive track keep going. We hope and pray that it is a very long time. He continues with Avastin every other Wednesday and wears the Optune Cap. We thank God every day for our family and friends. Wishing everyone in this group some positive news in the days ahead.
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3 ReactionsIf anyone would like more information on the Optune Cap and how it is applied, we found great videos with step-by-step guidance on You Tube. Just type in "Optune".
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2 Reactions@otis123 You have provided some excellent information (as well as pictures) as to how your husband has coped with this. You are both to be applauded for your tenacity and persistence in making this work for him!
I appreciate your sharing your journey here on Connect!
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3 ReactionsThe arrays do itch once in awhile but not so it's a problem. He does get some red irritation spots at times. I put a steroid cream on them when we take the arrays off. It has to stay on for at least 20 minutes and then gets wiped off. I will then try to avoid covering any irritated spots by cutting out holes in the adhesive to let air get to them. We have been successful so far with no problems. He sleeps okay and has it plugged into a power source all night. It's just a pain to have to unplug and carry it with him when he wakes in the middle of the night. However, he has been wearing the cap since March 17 and is quite used to it. I am attaching a couple pictures.
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