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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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@manty54, I'm glad you found us too. You must feel very alone. The waiting is so hard. How are you doing?
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
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2 ReactionsThe 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.
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1 ReactionSo 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.
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2 ReactionsThank 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 🙁
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1 ReactionI suspect you have plenty of talent as a mother and that is what they will need most. Prayers!
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3 ReactionsThank you! I really appreciate all these encouraging words.
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1 Reaction@manty54, I recommend that you ask to meet with a social worker. Oncology social work is an often overlooked service offered at cancer centers. You may find this blog post, written by the Mayo Clinc oncology social work team, helpful to learn more
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/
Their services include finding financial assistance and solutions, as well as helping the entire family, not only the patient.
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1 ReactionHello Dan -
How is your wife doing? I haven't kept up with this thread very often since my husband passed on 10/25, but checking back today and see that y'all have had a bit of a rough time. I'm very sorry to hear and hope she's improved since your last post.
I will say that after my husband's one and only seizure on 10/2, he did exhibit longer episodes of being "out of sorts," odd behavior, and also had to pee quite often, couldn't control his bladder in the end. He had to start using pull-up adult diapers after he was released from the hospital, which was an increased level of care that caught us off guard!! And while my husband lost his know-how for doing any task, he was acutely aware of any change in his condition as it was happening and would tell me so.
Many prayers for improvement for you, your wife and all the other families going through the same!! Vickie
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4 ReactionsVickie,
Thank you for your comments and inquiry. My wife Anne is having two good weeks as this is her last week prior to the next chemo cycle on Dec 24. She hasn't had any bizarre behavior, or bladder issues since the ones after Thanksgiving. Her mind is slower to process information and retain it, she has to search for words, but she can carry on a conversation. She still has decent mobility and we can go on errands together, even went to dinner with friends this week so several things are positive now. I am still trying to figure out what caused the episode three weeks ago. The docs blame it on the brain bleed from the falls, but I am not convinced the chemo didn't contribute to it. We are going back and forth with the oncologist on her dose for the coming cycle. He wanted to increase it or keep it at 200 mg temodar. After our video call today he agreed to cut it back to 150 mg. At this point it is a balancing act between how much good the chemo does and how much bad it does. Anne's next MRI is Dec 26 so we are anxious for that result. How are you doing? I hope you have family or friends to spend the holidays with.
Prayers for you and yours,
Dan