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.

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Profile picture for otis123 @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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Profile picture for Teresa, Volunteer Mentor @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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Profile picture for otis123 @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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Profile picture for Colleen Young, Connect Director @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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Profile picture for otis123 @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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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 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?

REPLY
Profile picture for otis123 @otis123

His latest MRI of 8/5/2021 shows progression of the cancer. There is one more chemo that we can try if he can avoid side effects. It's Irinotecan. The Oncologist doesn't seem very positive about its effectiveness. Otie is showing signs of memory and cognitive thinking issues. It breaks my heart. There doesn't seem to be anything that has a chance of working on a non-methylated glioblastoma. If anyone knows of anything, we are at the desperation stage.

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I am so sorry to hear this, @otis123. I can only imagine the heartbreak you must feel. You mentioned that he is showing signs of memory loss of cognitive issue. Does he also have increased physical problems as well?

When do you expect him to begin the new chemotherapy?

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @otis123

How is your husband doing these days? Is he showing any improvement? How are you doing?

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His latest MRI of 8/5/2021 shows progression of the cancer. There is one more chemo that we can try if he can avoid side effects. It's Irinotecan. The Oncologist doesn't seem very positive about its effectiveness. Otie is showing signs of memory and cognitive thinking issues. It breaks my heart. There doesn't seem to be anything that has a chance of working on a non-methylated glioblastoma. If anyone knows of anything, we are at the desperation stage.

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Profile picture for otis123 @otis123

Well things are not going very well for Otis. I wish I could find a good drug, trial or otherwise, for a non-methylated tumor. He is now on carboplatin, but I am not very encouraged that it is working. He has an MRI on 8/5/21 and if the tumor is not stable or shrinking, we will need yet another option.

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Hello @otis123

How is your husband doing these days? Is he showing any improvement? How are you doing?

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