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.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

@otis123 I found some information on National Library of Medicine's website. It mentions different drugs that can be used. https://pubmed.ncbi.nlm.nih.gov/25394859

I suppose you have investigated clinical trials?

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Physically, he is about the same. I have been helping him dress for quite awhile. What is new is I'll say "let's go" and he will say "ok" and then stay sitting. The doctor says the message to move doesn't travel as fast from his brain to the body part. He still has no pain, for which I am thankful. He starts the new chemo on Friday, 8/14. I really hope it does not cause the diarrhea that keytruda did. It was horrible. Thank you for the link....I will check it out!

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@otis123

Physically, he is about the same. I have been helping him dress for quite awhile. What is new is I'll say "let's go" and he will say "ok" and then stay sitting. The doctor says the message to move doesn't travel as fast from his brain to the body part. He still has no pain, for which I am thankful. He starts the new chemo on Friday, 8/14. I really hope it does not cause the diarrhea that keytruda did. It was horrible. Thank you for the link....I will check it out!

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Hi @otis123, I am thinking about you and your husband today. How are you both doing? How is the new chemo?

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@colleenyoung

Hi @otis123, I am thinking about you and your husband today. How are you both doing? How is the new chemo?

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The new chemo is Irinotecan and isn't working either. He has had 4 treatments, and we are stopping. He can't control when he goes to the bathroom, and it's awful. He hardly talks. He likes to push buttons and turn things on and off. It is very sad to watch. I miss my Otie. He isn't the same.

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@otis123

The new chemo is Irinotecan and isn't working either. He has had 4 treatments, and we are stopping. He can't control when he goes to the bathroom, and it's awful. He hardly talks. He likes to push buttons and turn things on and off. It is very sad to watch. I miss my Otie. He isn't the same.

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I bet you miss your Otie. This is something you should have to face so young. Have you consulted palliative care? How are you doing?

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@hopeful33250

@otis123 I found some information on National Library of Medicine's website. It mentions different drugs that can be used. https://pubmed.ncbi.nlm.nih.gov/25394859

I suppose you have investigated clinical trials?

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We are beyond that. There are no clinical trials for a non-methylated tumor that show any success.

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@otis123

We are beyond that. There are no clinical trials for a non-methylated tumor that show any success.

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I am sorry to hear that, @otis123. It sounds as if you are both facing a difficult transition that neither of you wants to face at this time of your life.

Do you have any plans for the next few months? I'm thinking of possible palliative care that @colleenyoung mentioned.

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@hopeful33250

I am sorry to hear that, @otis123. It sounds as if you are both facing a difficult transition that neither of you wants to face at this time of your life.

Do you have any plans for the next few months? I'm thinking of possible palliative care that @colleenyoung mentioned.

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My dear Otie had a seizure on 10/10/2021 that took him to the hospital. We decided, together with his doctor, to end all further treatment and bloodwork and doctor visits, as nothing we tried this year seemed to help at all. I brought him home on 10/14 and had Hospicare help along with a wonderful group of friends and relatives who helped me care for him. He passed away on 11/08/2021. He was my best friend and the best husband ever. I know he is at peace now in Heaven.

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Hello @otis123 ,

Please accept my condolences on the passing of your husband and your good friend. You both made a very courageous decision in October and I admire that you could both be in agreement.

I pray that you will continue to find comfort through your faith and support from your circle of friends and family.

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@hopeful33250

Hello @otis123 ,

Please accept my condolences on the passing of your husband and your good friend. You both made a very courageous decision in October and I admire that you could both be in agreement.

I pray that you will continue to find comfort through your faith and support from your circle of friends and family.

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Thank you.

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