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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Thank you for listening to me. I’m so scared. We are also trying to live day by day but still is so hard to shut down what will happen with the life of my kids in near future. I can’t give them everything they have right now. I have never worked and have no talent 🙁
So sorry to hear about your situation. Don't worry about venting as we all need to do that. All of us who had our lives changed dramatically in a very short time understand. I agree that watching our loved one struggle is the most difficult part. My wife and I get through this by living day by day, and a strong reliance on God to assist us. Things like the money situation seem daunting, but these issues can be solved in time. Our prayers are with all those struggling with this disease.
The next MRI is scheduled for Dec 26. During that week she will also be on her chemo treatment cycle. Tests were negative for UTI. I believe the bizarre behavior is a result of the chemo affecting her brain. Since then she has been off chemo now for 10 days and behavior is normal, balance is better, and taste is returning and she is eating better. They wanted to increase her temodar from 200 mg to 300 mg on the last cycle, but I would not agree. I don't know what dose they want to use on the next cycle beginning Dec 24, but again, I won't agree to an increase, and think maybe the 200 mg is too much. There has to be some balance here and that is what we are searching for.
I feel terrible! I’m watching the live of my life struggling everyday. He was an active physician until 2 weeks ago and now my whole world has crashed in a second. The problem is that I have no income and my husband was the only income of our household. My kids had the best life and now I have to
Tell them to watch their spending and they really don’t get it. I’m so lost and devastated. What do I do with bills that I haven’t received yet? My saving is going to be gone within couple of months. I wish there was a cure for this I would have tolerated this time but there is no cure my life and my husbands life is basically over. I wish I could do something for him. Sorry for venting out but there is a lot going on my mind right now
@manty54, I'm glad you found us too. You must feel very alone. The waiting is so hard. How are you doing?
@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?
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
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
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.
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.