My Husband's journey with Glioblastoma

Posted by otis123 @otis123, Sep 25, 2020

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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@pnf24

I’m a little unsure if I’m posting in the correct location, but here goes: In 2002 I was diagnosed with an atypical meningioma in the left frontal lobe. At the same time, my NS found there was a small parasagittal tumor that he advised leaving. Over the years, I have grown a few small tumors that seemed to grow to about 1 to 1.5 cm before they either necrosed or just stopped growing. Last year was the most recent one and me NS suggested I consider gamma knife as it had appeared and grown a bit more than the others during a 2 year period (the length of time between my scans). I was put on an every 6 month MRI schedule. The first last Sept was fine, but on March 29, 2024 a new tumor was found in the left frontal lobe-basically at the site of my original tumor. Because it had popped up and grown rapidly to about 1-1.5 cm, my NS recommended surgery which I had on 5/9/24. Needless to say, I was shocked when the path report came back as possible high grade astrocytoma or glioblastoma pending reports from Mayo and NIH. The final report came in this afternoon showing GBM. I actually started the rad/chemo regimen last week. As of today, I’ve had 5 rad treatments and 7 TMZ. So far and fingers crossed, I have not had any serious side effects. I’m tired, but really blaming it on surgery just a month ago. I told the Neuro APN that I didn’t realize a benign tumor could recur as a malignant one. She replied that it didn’t. They felt thus to be an entirely different entity. Just wondering if others have had this type of BT history?

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@pnf24, I can imagine that your new diagnosis came as a shock. It seems that you've won a lottery you didn't want to enter in getting 2 different types of brain tumors - one benign, one not.

How are you doing with treatment? What kind of radiation are you having?

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@colleenyoung

@pnf24, I can imagine that your new diagnosis came as a shock. It seems that you've won a lottery you didn't want to enter in getting 2 different types of brain tumors - one benign, one not.

How are you doing with treatment? What kind of radiation are you having?

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I am having 6 weeks of radiation for a total of 6000 (?eGY) by linear accelerator, Monday-Friday and during the same time, I am taking temodar Monday-Sunday

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Bill has recurrence after 13 months of none. Tolerated chemo well. Peripheral vision was his loss after surgery. Looking at radiation and avastin now. This recurring tumor is much smaller than the original tumor and is on the right side now. He is complaining of more confusion and vision issues. Feels the room is darker. Very depressed about dying now. Any experiences appreciated 😊

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@nancyhafer

Bill has recurrence after 13 months of none. Tolerated chemo well. Peripheral vision was his loss after surgery. Looking at radiation and avastin now. This recurring tumor is much smaller than the original tumor and is on the right side now. He is complaining of more confusion and vision issues. Feels the room is darker. Very depressed about dying now. Any experiences appreciated 😊

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Oh, @nancyhafer, this must be so hard for you to see Bill suffer, especially dealing with the harsh reality of facing the end. Have you sought the help of someone for both of you. For example you may wish to
a) seek the counsel of an oncology social worker
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

b) ask your cancer center about an inperson or support group meeting for patients and/or caregivers
- Brain Tumor Support Group Meeting: Compass Connect
https://connect.mayoclinic.org/event/brain-tumor-support-group-compass-connect-10/
- Cancer and Transplant Caregiver Support Group Meeting
https://connect.mayoclinic.org/event/cancer-and-transplant-caregiver-support-group-28-8162/
c) look into supports from your local hospice

Might any of these help?

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