1. < Brain Tumor

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 | @otis123 | Sep 28, 2020
In reply to @otis123 "The misleading fact about Optune is when they say you have to "have it on at..." + (show)
@otis123

The misleading fact about Optune is when they say you have to "have it on at least 18 hours a day". People think you can take the entire thing off your head for up to 6 hours. It really means that you have to have the TTFields turned on for that amount of time. Once you stick those four transducer array pads on the scalp, you don't take them off for 3 or 4 days. The day you put them on is counted as day 1. So I changed Steve's yesterday (Sunday) and we will take them off to change them on Tuesday or Wednesday. The only time he has the TTFields turned off during that time is to shower...so about 1/2 hour tops per day until we change them. On the day we change them, he has a "free" head for 6 hours. Sometimes it ends up being longer if we are out somewhere, but because he wears it about 23-1/2 hours on the other days, he has lots of banked hours. I remove the arrays carefully under warm water so they won't peel the skin off his head. I have a steroid cream that I put on any red spots after his shower. He says the Optune Cap just feels like he has a hat on all the time. Sometimes it is a little warm but most of the time he doesn't notice. He does love his time with a "free" head though. We aren't sure how long he will use this treatment, but I hope he can wear it until the tumor is gone and we have at least 2 clean MRI's....if we are that lucky! When we go out, sometimes he wears a hat (a floppy safari hat) and sometimes not. It is important to stay out of the sun, because if the sun beats down on his head, it sets an alarm off. This prevented us from walking during bright sunny days this summer. Wearing a hat just makes his head hotter. He gets some stares from people but not as many as you would think. He calls himself "Uncle Fester". He's a Trooper!!

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Colleen..is there any way to reduce the size of the pictures that are attached? Steve would allow me to post a picture of him with a hat and without, but I don't want them to take up so much room on this page.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 29, 2020
In reply to @otis123 "Colleen..is there any way to reduce the size of the pictures that are attached? Steve would..." + (show)
@otis123

Colleen..is there any way to reduce the size of the pictures that are attached? Steve would allow me to post a picture of him with a hat and without, but I don't want them to take up so much room on this page.

Jump to this post

@otis123, it would be great to see a picture of your husband wearing the optune cap. That would be helpful and thank you in advance to your husband for being such a willing sport. The size of the picture is dependent on the resolution and size of the original image. To make is smaller be sure it is a low resolution and cropped to a smaller size. Alternatively, you can upload it as is and I can crop it smaller for you.

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1 reply
otis123 | @otis123 | Sep 30, 2020
In reply to @colleenyoung "@otis123, it would be great to see a picture of your husband wearing the optune cap...." + (show)
@colleenyoung

@otis123, it would be great to see a picture of your husband wearing the optune cap. That would be helpful and thank you in advance to your husband for being such a willing sport. The size of the picture is dependent on the resolution and size of the original image. To make is smaller be sure it is a low resolution and cropped to a smaller size. Alternatively, you can upload it as is and I can crop it smaller for you.

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I tried to reduce the picture and hope I was successful. If not, maybe you can help reduce it.
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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 1, 2020
In reply to @otis123 "I tried to reduce the picture and hope I was successful. If not, maybe you can..." + (show)
@otis123

I tried to reduce the picture and hope I was successful. If not, maybe you can help reduce it.

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@otis123, Great picture and thanks for sharing it. It really helps to see it "for real". Do the arrays get itchy or irritating? Did he find it okay to sleep with it?

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1 reply
otis123 | @otis123 | Oct 3, 2020
In reply to @colleenyoung "@otis123, Great picture and thanks for sharing it. It really helps to see it "for real"...." + (show)
@colleenyoung

@otis123, Great picture and thanks for sharing it. It really helps to see it "for real". Do the arrays get itchy or irritating? Did he find it okay to sleep with it?

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The arrays do itch once in awhile but not so it's a problem. He does get some red irritation spots at times. I put a steroid cream on them when we take the arrays off. It has to stay on for at least 20 minutes and then gets wiped off. I will then try to avoid covering any irritated spots by cutting out holes in the adhesive to let air get to them. We have been successful so far with no problems. He sleeps okay and has it plugged into a power source all night. It's just a pain to have to unplug and carry it with him when he wakes in the middle of the night. However, he has been wearing the cap since March 17 and is quite used to it. I am attaching a couple pictures.
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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 3, 2020

@otis123 You have provided some excellent information (as well as pictures) as to how your husband has coped with this. You are both to be applauded for your tenacity and persistence in making this work for him!

I appreciate your sharing your journey here on Connect!

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2 replies
otis123 | @otis123 | Oct 14, 2020
In reply to @hopeful33250 "@otis123 You have provided some excellent information (as well as pictures) as to how your husband..." + (show)
@hopeful33250

@otis123 You have provided some excellent information (as well as pictures) as to how your husband has coped with this. You are both to be applauded for your tenacity and persistence in making this work for him!

I appreciate your sharing your journey here on Connect!

Jump to this post

If anyone would like more information on the Optune Cap and how it is applied, we found great videos with step-by-step guidance on You Tube. Just type in "Optune".

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otis123 | @otis123 | Oct 29, 2020

One year ago today, my husband was recovering from his first surgery after discovering the mass in his head on 10/25/19. What a year it has been. Life certainly does change.....your daily activities, what you worry about, what you eat, what you pray for and coupled with this virus...Wow. He has come a long way and continues to feel good. His only issue is being tired all the time. I try to make him choose an activity every day--even if only for a half hour. We feel very fortunate to be here and on a positive track. The scary unknown is how long will the positive track keep going. We hope and pray that it is a very long time. He continues with Avastin every other Wednesday and wears the Optune Cap. We thank God every day for our family and friends. Wishing everyone in this group some positive news in the days ahead.

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1 reply
Erika | @erikas | Oct 29, 2020
In reply to @otis123 "One year ago today, my husband was recovering from his first surgery after discovering the mass..." + (show)
@otis123

One year ago today, my husband was recovering from his first surgery after discovering the mass in his head on 10/25/19. What a year it has been. Life certainly does change.....your daily activities, what you worry about, what you eat, what you pray for and coupled with this virus...Wow. He has come a long way and continues to feel good. His only issue is being tired all the time. I try to make him choose an activity every day--even if only for a half hour. We feel very fortunate to be here and on a positive track. The scary unknown is how long will the positive track keep going. We hope and pray that it is a very long time. He continues with Avastin every other Wednesday and wears the Optune Cap. We thank God every day for our family and friends. Wishing everyone in this group some positive news in the days ahead.

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@otis123 Your husband is recovering and on a positive track. Of course the "unknowns and the "how long" is scary. Despite this it sounds like you and your husband are thankful for every moment together and moments with family and friends.

It feels impossible to not take life for granted. I thank you for the reminder to cherish every moment.

It's good you encourage him to do an activity each day, despite his fatigue. It must be more challenging with Covid-19. May I ask what kinds of activities you do together each day?

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otis123 | @otis123 | Oct 30, 2020

We basically do household cleanup on our "to do list". This week, we are cleaning out the garage so that he can pull his truck in before the snow hits us. When he is out there by himself, he seems to lose interest quick and comes back in. I have a lot of energy, so when I am out there with him, I keep him going. I do a lot of the organizing, etc., and call on him to either make a decision about keeping something or help me move something. He does his own thing in between. I bet we were out there for over an hour yesterday and are almost done. Today, he is going to sort his tools on top of his workbench in the garage. We have a lot of projects going in the house, so there is always something to do.

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