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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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My sincere condolences, thoughts and prayers to you. Your family and friends.
I continue to live with GBM and I am doing very well . I was lucky to get in to the BN001 study and with my tribe of prayer warriors I believe i am the Miracle we all prayed for. My last two MRI'S have been clear. So very blessed and thankful for every day I am given. God's blessings to you.
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2 ReactionsI am so sorry for the passing of your husband. It sounds like you were an amazing caretaker and there with him every step of the way. We are keeping you and your family in our prayers.
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2 ReactionsCan I ask if your tumor was methylated? Otie's was not.
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1 ReactionMine was not also.
I’m so sorry for your loss. Thank you for sharing your story, I’m sure it must have been difficult to write about his passing.
My husband is in a very similar situation. IGH- Wild, unmentholated MGMT. Surgery, TMZ and radiation. Tumor recurrence after follow up MRI.
He is going to start taking a dewormer this week. Hopefully that helps. We’re both feeling very hopeless at this point.
Try the Optune Cap through Novocure. Don't let the cost scare you. They look at your financial situation and put a cap on what you can be charged. The cap for us was $250 a month. To date, I have only been charged $250 once. I truly believe that during the 10 months he wore that, it was the reason his MRI's showed tumor decrease. Unfortunately, it stopped working and we desperately tried different chemos with no success. A change in diet helped too, I believe. Cutting out almost all sugar, no processed foods, no fast food, brown/wheat rice and pasta, sprouted grain bread, berries, avocado, green vegetables. If his MRI shows the tumor all contained in one area, the Duke trial may help. That sounds really good, but Otie's tumor had cells outside the nucleus so he didn't qualify. Look on your computer for trials and have the National Cancer Institute help you. They are very responsive. Work closely with your Oncologist so you always know what the next step will be if something doesn't work. Let me know if I can provide any other info for you or help in any way. I'm so sorry you are going through this. Enjoy every minute together and never give up hope. Stay positive! Sending love and hugs!!
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1 ReactionI am excited about the possibilities of Prozac for GBM treatment. My Mayo oncologist shared the research on Prozac and GBM https://scopeblog.stanford.edu/2022/01/05/can-prozac-fight-brain-cancer/
I already take an antidepressant so am in transition from Lexipro to Prozac. Other than some side effects, what do I have to lose?
@nauden, you will see that I have moved your post into an active glioblastoma discussion so you can share and connect with others like @heather816 @suez5 @mgreen616 and @suez5 who most recently commented.
Were you a candidate for this treatment due to already being prescribed and antidepressant or is this available more widely to others, do you know?
The discussion with my oncologist was twofold; he noted that my tumor has EFGR mutation and I’m already on an antidepressant so he asked If I was open to changing anti-depressants because Prozac treatment seems to work particularly well with the EFGR mutation. It’s definitely something you could talk to your oncologist about.
On June 21, 2023 my wife was diagnosed with a brain tumor on her left frontal lobe. Prior to that she had no symptoms before June 16 when she had some strange twitching on the right side of her face. She had surgery to remove the tumor on July 6. The surgeon seemed very pleased with getting everything he could see. Recovery from surgery was remarkable. No pain two weeks later and walking over two miles a day.
The pathology of glioblastoma grade 4, markers IDH wildtype, EGFR amplified, MGMT promoter methylation present. Radiation for 30 treatments with concurrent temodar for 42 days began on August 9. This seems to be the standard of care from what I read. I was somewhat disappointed it took so long for the oncologist and radiology doctors to coordinate the start of treatment.
After the first three treatments my wife has no detrimental side effects. The radiology doctor said that fatigue would likely set in about the second or third week of treatment. Anyone care to comment on that timeline? Have others gone through the treatments without side effects?
When we met the oncologist he said we should not use any supplements during the process. That was disappointing to me as I am a believer in supplements. I also note that cancer patients I have known, and those on this blog have pointed to certain dietary changes that have helped in the fight with the disease. This doctor told us to stay off the internet. I was also shocked to hear this, as it closes down an additional source of information. He made another comment about not using any horse drugs. Not wanting to cause a scene, I did not reply to this doctor about what I consider ludicrous comments. If I was the patient I would have ended that relationship, but my wife did not challenge his comments so I kept quiet. I am curious what others think about this situation?
We are both retired and my wife is an active 70 years old. She is a fighter and very strong as she has met a number of physical challenges in her life. She has a very positive attitude. Her
heart and BP are excellent as well so that should help.
I am interested in comments from others going through this situation.
thanks,
Dan
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