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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This result sounds encouraging. May I ask when were you first diagnosed with GBM, and did you have surgery for tumor removal? Was the surgery deemed successful? Finally, when did you complete the SOC? What were your reasons for quitting SOC? I am trying to evaluate your situation for correlation to my wife's GBM.
Thanks,
I read the article and it does sound encouraging. It does note using the Prozac along with standard treatment though. Are you still taking the standard treatment, and if so at what stage?
My wife is one week post cycle one of the increased Temodar of 5 on and 23 off. It has again resulted in loss of appetite and weight loss. If something such as the Prozac would lengthen the time off from the chemo drug that would be a blessing.
Thanks,
I completed final TMZ chemo about a month ago. The only treatment I’m getting is the Optune device. For me the Prozac was a logical addition since I was already taking an antidepressant. So there was only an upside as far as my oncologist and I were concerned.
1/23 almost total resection at Mayo Jacksonville.grade 4 Methylation absent. Completed chemo and radiation.would not continue on temodar due to no evidence that it is effective for this cancer.
i am going day by day and so far feeling good and just hopeful for prozac to prolong my life.
I wanted to give an update on my wife's battle with GBM. My wife had fallen on Nov 23 while outdoors with some family members on Thanksgiving. She scraped her chin, but no broken bones. Then she fell again the night of Nov 26 while in her closet undressing. She got some nasty welts on her back and rear hitting a shelf on the way down.
She started cycle 2 of the 5/23 on the evening of Nov 26. On the evening of the 28th she was sitting on the sofa and went into some bizarre behavior. She lost cognitive ability for the most part, although she could answer some questions briefly. She also had a fever of 101.7, tremors in her hands, and was very tired. I decided to skip the temodar dose for that night. I gave her tylenol and she went to bed about 8 pm.
I figured I should run this by the oncologist and got the on call doc. She recommended I take her to ER immediately. When I got her out of bed her temp had gone up to 102.7. It was difficult dressing her as she was still out of it. She also had to pee about every 10 minutes, including on the drive to ER. She had a CT scan and was diagnosed with a brain bleed, which they said was probably from the falls. I was concerned that maybe the temodar was a factor in the bleed, but they said no. They were afraid she would need surgery, but decided to wait 6 hours and take another CT. Fortunately, it showed the bleeding stopped, as did a third CT the next day. A test for UTI was negative and strangely her temp returned to normal shortly after arriving at ER. She spent two nights in the hospital.
When we got home on Nov 30 she began day 3 of the temodar (as authorized) and completed day five Sat night Dec 2. On Sunday she was wiped out tired, and went into and out of cognition a couple times. About 6 pm she again went into the same bizarre behavior as several days prior. This lasted several hours, but she came out of that after about 3 hours. I am very concerned about the bizarre behavior and wonder if that is caused by the temodar, or tumors. If it is the temodar I have to wonder if the risk of that drug out weighs the benefit.
She had 3 CT's in the hospital, but I couldn't get any of the docs to comment on the tumor status. They kept saying they were more concerned with the bleed, and that an MRI would be more informative. This was frustrating to say the least. Any comments from current GBM patients or caregivers on this series of events?
Thanks,
Dan
Hi everyone, my husband just had a surgery of GBM. We are waiting for the pathology, but it doesn’t look good. I’m overwhelmed by this I have 3 kids and my husband was the only household income. I’m happy that I found you guys here, and can talk to you. I live in Orange County California. Do you guys know what is our next step. Should I look for clinical trials around us. Obviously I can’t travel with 3 kids. I’m lost and heartbroken.
Hi Dan, since we did the surgery on my husband on 12/1/23 he also has to do to bathroom every couple of hours, and he is sleep most of the day.
Judging by your post you must be younger with 3 kids. In that case you should inquire to your doctor and go on line about clinical trials. Your husband may be a candidate for something promising. In my wife's case she was not eligible for any clinical trials because of her age. Hopefully they were able to get most of the cancer out which will increase his chances. Our prayers are with you and your family. Please keep us posted on the progress.
Dan
My husband is 54. He had 3 tumors. 2 in frontal lobe and a small one in his left side that they didn’t touch because it was in critical location. We have to go back in two weeks to find about the pathology but based on the spread of the tumor the doctor is not hopeful
@djw, what an ordeal. This must've been scary for you. The bizarre behavior you describe could be an number of things, like the tumor, a urinary tract infection, the fall, other...? Has she had the MRI in the meantime? Do you have any answers?