My Husband's journey with Glioblastoma

Posted by otis123 @otis123, Sep 25 8:38am

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.

Hello @otis123 Welcome to Mayo Connect and thank you for sharing your husband's journey. It is helpful to read of other's journeys as each patient, their cancer, and treatments can be so unique!

I am happy to read you have been receiving positive news of late! Congrats!

My wife fought her brain cancer for over 14 years and it is amazing to read of all the wonderful new therapies that constantly appear! How is your husband handling the demands of his journey?

Strength, courage, and peace

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Steve is very lucky in that he experiences no pain or side effects from any of the treatments he has had. For that we are truly thankful.

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@otis123, I'm thrilled that you took the time to share your husband's journey with Glioblastoma after silently following the discussions for several months. I'm confident that fellow members @marcyprof @bjh369 @daughterfuturemd @rosez @ginette55 @nursnis @donnamar @nelliegraywar @youngwoman and others will appreciate your post and may encourage them to do the same.

Otis, several members are asking questions about the Optune cap. Might you be able to talk more about your husband's experiences with that in this discussion?
– Glioblastoma (GBM) trials and therapeutic devices (Optune): https://connect.mayoclinic.org/discussion/gbm-trials-ttfields-brain-device/

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I have no idea what that cap is. I have not. been on the site for awhile because right now my heart is broken because of my daughter's cancer

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Hello @rosez,

It has been a while since you last posted and I'm glad to hear from you again. I cannot imagine the stress you must feel with both your daughter and husband having cancer. You mentioned in a previous post that your daughter was finally diagnosed with cancer of the Thymus. I understand that this is a rare type of cancer. Could you share a little about what type of treatment she is receiving? Is this treated with surgery, radiation, or chemo?

How is she dealing with the emotional impact of this on her young daughter? Does she have a good support system in place where she lives?

Thinking of you and your family and wishing you all better days.

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My daughter had a nuclear test this week. They found that the cancer is only in her neck and a tumor pressing on her heart. She is waiting for a date for surgery. There will be both a thoracic surgeon and a cardiologist present. She will also have to go through chemo and radiation. Her twin girls are only 3 1/2 so they are totally unaware of what is happening. I am sure they will be wondering where their mom is and they haven't decided yet what they will tell them. Luckily she has a wonderful mother-in-law who she is now temporarily living with. My heart is turn in half and I do cry on a daily basis. My husband needs me and I need to see her. I am planning on going to see her in the near future but unfortunately my husband cannot go because he is on chemo.

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@colleenyoung

@otis123, I'm thrilled that you took the time to share your husband's journey with Glioblastoma after silently following the discussions for several months. I'm confident that fellow members @marcyprof @bjh369 @daughterfuturemd @rosez @ginette55 @nursnis @donnamar @nelliegraywar @youngwoman and others will appreciate your post and may encourage them to do the same.

Otis, several members are asking questions about the Optune cap. Might you be able to talk more about your husband's experiences with that in this discussion?
– Glioblastoma (GBM) trials and therapeutic devices (Optune): https://connect.mayoclinic.org/discussion/gbm-trials-ttfields-brain-device/

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First of all, my name is Kathie. My husband's nickname is "Otis". I will talk a little about our experience with Optune and will be happy to try to answer any questions folks have. The Optune Cap creates low intensity, wave-like electric fields called Tumor Treating Fields (TTFields). The TTFields interfere with GBM tumor cell division, slowing or stopping the tumor cells from dividing. It may even destroy them. Optune is from a company called Novocure, and they are very helpful and available 24/7 to answer questions and provide support. A technician came to our home back in March and spent a couple hours demonstrating and teaching me how to attach the Optune Cap to Steve's head. Basically, I have to shave his head, wipe his scalp with 70% alcohol, and then apply the arrays. I attached a picture of the arrays. There are four of them to attach. It's like a huge bandaid with sticky circles that remind me of corn pads. Four days is the maximum time before changing them. I started removing them under running warm water to reduce the possibility of skin irritations. Steve does well with Optune. He has to carry it around with him all day. It weighs about 5 lbs. We have to remember to take extra batteries when we leave the house. When home, we have a power supply box that can be plugged in to save the batteries. I could go on and on but think it best to see what kind of questions are out there.

Optune Arrays

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@rosez

My daughter had a nuclear test this week. They found that the cancer is only in her neck and a tumor pressing on her heart. She is waiting for a date for surgery. There will be both a thoracic surgeon and a cardiologist present. She will also have to go through chemo and radiation. Her twin girls are only 3 1/2 so they are totally unaware of what is happening. I am sure they will be wondering where their mom is and they haven't decided yet what they will tell them. Luckily she has a wonderful mother-in-law who she is now temporarily living with. My heart is turn in half and I do cry on a daily basis. My husband needs me and I need to see her. I am planning on going to see her in the near future but unfortunately my husband cannot go because he is on chemo.

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My daughter just informed me that they have to replace the right valve going to her heart because of the tumor pressing on it.

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@otis123

First of all, my name is Kathie. My husband's nickname is "Otis". I will talk a little about our experience with Optune and will be happy to try to answer any questions folks have. The Optune Cap creates low intensity, wave-like electric fields called Tumor Treating Fields (TTFields). The TTFields interfere with GBM tumor cell division, slowing or stopping the tumor cells from dividing. It may even destroy them. Optune is from a company called Novocure, and they are very helpful and available 24/7 to answer questions and provide support. A technician came to our home back in March and spent a couple hours demonstrating and teaching me how to attach the Optune Cap to Steve's head. Basically, I have to shave his head, wipe his scalp with 70% alcohol, and then apply the arrays. I attached a picture of the arrays. There are four of them to attach. It's like a huge bandaid with sticky circles that remind me of corn pads. Four days is the maximum time before changing them. I started removing them under running warm water to reduce the possibility of skin irritations. Steve does well with Optune. He has to carry it around with him all day. It weighs about 5 lbs. We have to remember to take extra batteries when we leave the house. When home, we have a power supply box that can be plugged in to save the batteries. I could go on and on but think it best to see what kind of questions are out there.

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Kathie (@otis123), I have a few questions.
How many hours a day does your husband where the Optune?
How long will he use this treatment?
When you go out, does he wear a cap or knitted hat?
What does it feel like?

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@colleenyoung

Kathie (@otis123), I have a few questions.
How many hours a day does your husband where the Optune?
How long will he use this treatment?
When you go out, does he wear a cap or knitted hat?
What does it feel like?

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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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@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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@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.

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@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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@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.

Optune Arrays

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@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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@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.

Optune Battery Case

Optune Cords

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