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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 so very sorry for the journey your husband and yourself are currently experiencing. If you are in New York I don’t understand why you aren’t scheduled for treatment at Sloan Kettering?
Last February while in the hospital in Las Vegas, my glioblastoma was discovered. I contacted the Huntsman Cancer Institute in Utah while I was still in the hospital and scheduled surgery to remove as much as the tumor as possible. After the surgery i began the journey of radiation treatments with Temodar. That ended in May and then I started the stronger dose of Temodar for 5 days every 28 days till December. I flew to Utah for every month to check in with my doctor at Huntsman and get a MRI scan ever other month. Because the tumor has never appeared on those scans since the surgery, I can finally cease taking Temodar and simply fly to Utah every two months to continue with the MRI scans for the next two years.
I just wanted to share my long journey so far with you to give you hope. It also is critical to grow stronger spiritually, physically and nutritionally. It is very important to take care your whole well-being during this time and beyond. My prayers are with you!
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1 ReactionHello - thank you so much for the reply! We live in Kansas and he’s starting chemo/radiation tomorrow at Kansas University Medical Center. We would love the opportunity to get into a clinical trial and get other opinions but it seems everyone wants to wait until this first round of treatments are complete and see what the MRI shows.
Hi Scott,
Thanks so much for the reply. My kids are handling things very well but I always wonder what they are thinking and what their concerns are. One minute they will be scared and asking questions and the next they will be acting silly and want to play outside - they are keeping me sane and positive. Thank you for the website - I will check it out with hopes that he gets accepted into a clinical trial!
Maureen
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1 ReactionYou are more than welcome, @mgreen616 Nice to read you children are nice and resilient as they navigate this journey with you. Kids are wonderfully amazing to me! As you move forward I'd suggest, if you haven't seen it yet, consider visiting the Caregivers Group here on Mayo Connect. It is at
https://connect.mayoclinic.org/group/caregivers/The caregiving journey is as unique to each caregiver as is their loved one's disease, but there are many hints, tips, and suggestions within the posts there that have helped many. It's also a safe place to let loose our rants from time to time!
A lot of folks gave me lots of advice during my years as a caregiver, but one of the best, which helped me on many days, was to remember this "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day whispering 'I'll try again tomorrow.'
I'll leave this post with this personal thought: Superheroes only exist in the comics. Superman and Wonder Woman weren't caregivers!
Strength, courage, and peace
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2 ReactionsFor now, Sloan Kettering did not have anything to compare with what Duke has to offer. Sloan has a Phase II/III study of Regorafenib Lomustine but Otie is ruled out because he has had two prior regimens of chemo, one of which was Avastin. In my search, I was looking for a Phase II or III trial as opposed to a Phase I. Most Phase I trials are trying to determine what is a safe dosage and frequency of drug to administer. I am hoping for something that has already proven to work----like the Duke D2C7 trial. As of this morning, we still have not heard back from Duke, and we are trying to breathe through the stress and anxiety of waiting.
Well the phone call came late yesterday afternoon saying Otie was not eligible for the D2C7 trial at Duke because of outlying cells around his tumor that wouldn't allow the drug to be effective. They are suggesting Lomustine, which is confusing to me since Sloan Kettering seems to indicate that having treated with Avastin would rule out participation in a trial with Lomustine. I have asked Duke that question and will see what they say. So, basically, I am back to the drawing board if Lomustine gets ruled out. I really want to find a Phase II or III trial for a Gr IV Glioblastoma that has success with a non-methylated tumor. Anyone have any info? In the meantime, I will continue to search.
Call Dr. William Curry at Mass General in Boston!!! We were referred to him by Dr. Friedman @ Duke I am more than please. MG works closely with Dana Farber and they have put me on an Infusion Program which is one of their specializes. I am in my 14th month of Glioblastoma am glad I am there.
Can you tell me the name of the drug that you are having infused? I want to ask Duke about it and want as many details as possible. Thanks!
The infusion is a combination of my RNA that they put in every 3 weeks. They are using Pembrolizumab ( MK-3475 )and DFCI protocol is 16-225. Check out Mass General’s site when they talk about their infusion program which is one of they. Mass Gen and Dana-Farber /Harvard Cancer Center are partnering. MG will do second opinions I encourage you to call them.
Thank you for responding so quickly! I will contact Mass General and have also sent a message to Duke asking for Dr. Friedman's opinion of this treatment for Steve (Otie). Is your tumor MGMT methylated or not?