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.

hinklda | @hinklda | Jan 20, 2021
In reply to @otis123 "On January 6, 2021, I contacted the Cleveland Clinic, Duke, the Mayo Clinic, Sloan Kettering, and..." + (show)
@otis123

On January 6, 2021, I contacted the Cleveland Clinic, Duke, the Mayo Clinic, Sloan Kettering, and Mass General. A phone call from Duke on January 7 is what led us to visit them. We live in Cortland, NY, so it certainly is not close to home. A lot of the other clinical trials I read about excluded people who had been on Avastin. After hearing details about this D2C7 trial and that folks participating are still alive and well after five years with glioblastoma is very encouraging.

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I am so very sorry for the journey your husband and yourself are currently experiencing. If you are in New York I don’t understand why you aren’t scheduled for treatment at Sloan Kettering?
Last February while in the hospital in Las Vegas, my glioblastoma was discovered. I contacted the Huntsman Cancer Institute in Utah while I was still in the hospital and scheduled surgery to remove as much as the tumor as possible. After the surgery i began the journey of radiation treatments with Temodar. That ended in May and then I started the stronger dose of Temodar for 5 days every 28 days till December. I flew to Utah for every month to check in with my doctor at Huntsman and get a MRI scan ever other month. Because the tumor has never appeared on those scans since the surgery, I can finally cease taking Temodar and simply fly to Utah every two months to continue with the MRI scans for the next two years.
I just wanted to share my long journey so far with you to give you hope. It also is critical to grow stronger spiritually, physically and nutritionally. It is very important to take care your whole well-being during this time and beyond. My prayers are with you!

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1 reply
mgreen616 | @mgreen616 | Jan 20, 2021
In reply to @amandajro "Hello @mgreen616 and welcome to Mayo Clinic Connect. I am so sorry to hear of your..." + (show)
@amandajro

Hello @mgreen616 and welcome to Mayo Clinic Connect. I am so sorry to hear of your husband's recent change in diagnosis and understand you are looking to connect with other who may be able to share information to help you navigate this next part of his care journey, as well as to find ways to share information with your young children as you go forward.

You will notice that I have moved your post into an existing conversation started by @otis123 who is also going through a similar journey with her husband. I did this so you can connect with her, another caregiver @IndianaScott as well as other members such as @begleycon who may be able to help you.

I found the following blog that may be helpful as you decide how to share with your young children:
-How to talk to your kids about cancer:
https://blog.braintumor.org/guest-blog-how-to-talk-to-your-kids-about-cancer/
Can I ask where you are at currently for his care?

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Hello - thank you so much for the reply! We live in Kansas and he’s starting chemo/radiation tomorrow at Kansas University Medical Center. We would love the opportunity to get into a clinical trial and get other opinions but it seems everyone wants to wait until this first round of treatments are complete and see what the MRI shows.

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mgreen616 | @mgreen616 | Jan 20, 2021
In reply to @IndianaScott "Hi @mgreen616 I am sorry to read about your husband's medical demands. Really tough, difficult stuff..." + (show)
@IndianaScott

Hi @mgreen616 I am sorry to read about your husband's medical demands. Really tough, difficult stuff for him and you all, too. I am Scott and I add my welcome to you here at Mayo Connect. My wife had brain cancer and I was her primary caregiver during her 14+ year war with it. We have two children (grown) and two young grandsons who also had to deal with seeing my wife struggle with this terrible disease.

As far as clinical trials, I suggest the site below. It is the NIH's clearinghouse on clinical trials for cancer. It can be a very tool at times.
https://www.cancer.gov/about-cancer/treatment/clinical-trials/what-are-trials/where/clinical-center
Over the course of my wife's journey her tumor changed dramatically from time to time with no warning nor timetable. She often flummoxed even her medical team with how it changed, grew, or held off at times.

I know it will be of little comfort, but I will tell you our grandsons learned a great deal about how to interact with people with special/different needs than their own as they dealt with my wife's illness and its many permutations. They came to be quite empathetic and understanding of how disease can change, but at times not change, a loved one. Sometimes the changes were harder for our adult children to deal with than our grandsons. Odd I know, but in some cases young may be a benefit is what we saw.

I also remember times of change were the most challenging so I hope you get some time of stability.

Strength, courage, and peace

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Hi Scott,

Thanks so much for the reply. My kids are handling things very well but I always wonder what they are thinking and what their concerns are. One minute they will be scared and asking questions and the next they will be acting silly and want to play outside - they are keeping me sane and positive. Thank you for the website - I will check it out with hopes that he gets accepted into a clinical trial!

Maureen

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jan 21, 2021
In reply to @mgreen616 "Hi Scott, Thanks so much for the reply. My kids are handling things very well but..." + (show)
@mgreen616

Hi Scott,

Thanks so much for the reply. My kids are handling things very well but I always wonder what they are thinking and what their concerns are. One minute they will be scared and asking questions and the next they will be acting silly and want to play outside - they are keeping me sane and positive. Thank you for the website - I will check it out with hopes that he gets accepted into a clinical trial!

Maureen

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You are more than welcome, @mgreen616 Nice to read you children are nice and resilient as they navigate this journey with you. Kids are wonderfully amazing to me! As you move forward I'd suggest, if you haven't seen it yet, consider visiting the Caregivers Group here on Mayo Connect. It is at
https://connect.mayoclinic.org/group/caregivers/
The caregiving journey is as unique to each caregiver as is their loved one's disease, but there are many hints, tips, and suggestions within the posts there that have helped many. It's also a safe place to let loose our rants from time to time!

A lot of folks gave me lots of advice during my years as a caregiver, but one of the best, which helped me on many days, was to remember this "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day whispering 'I'll try again tomorrow.'

I'll leave this post with this personal thought: Superheroes only exist in the comics. Superman and Wonder Woman weren't caregivers!

Strength, courage, and peace

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otis123 | @otis123 | Jan 21, 2021
In reply to @hinklda "I am so very sorry for the journey your husband and yourself are currently experiencing. If..." + (show)
@hinklda

I am so very sorry for the journey your husband and yourself are currently experiencing. If you are in New York I don’t understand why you aren’t scheduled for treatment at Sloan Kettering?
Last February while in the hospital in Las Vegas, my glioblastoma was discovered. I contacted the Huntsman Cancer Institute in Utah while I was still in the hospital and scheduled surgery to remove as much as the tumor as possible. After the surgery i began the journey of radiation treatments with Temodar. That ended in May and then I started the stronger dose of Temodar for 5 days every 28 days till December. I flew to Utah for every month to check in with my doctor at Huntsman and get a MRI scan ever other month. Because the tumor has never appeared on those scans since the surgery, I can finally cease taking Temodar and simply fly to Utah every two months to continue with the MRI scans for the next two years.
I just wanted to share my long journey so far with you to give you hope. It also is critical to grow stronger spiritually, physically and nutritionally. It is very important to take care your whole well-being during this time and beyond. My prayers are with you!

Jump to this post

For now, Sloan Kettering did not have anything to compare with what Duke has to offer. Sloan has a Phase II/III study of Regorafenib Lomustine but Otie is ruled out because he has had two prior regimens of chemo, one of which was Avastin. In my search, I was looking for a Phase II or III trial as opposed to a Phase I. Most Phase I trials are trying to determine what is a safe dosage and frequency of drug to administer. I am hoping for something that has already proven to work----like the Duke D2C7 trial. As of this morning, we still have not heard back from Duke, and we are trying to breathe through the stress and anxiety of waiting.

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1 reply
otis123 | @otis123 | Jan 22, 2021
In reply to @otis123 "For now, Sloan Kettering did not have anything to compare with what Duke has to offer...." + (show)
@otis123

For now, Sloan Kettering did not have anything to compare with what Duke has to offer. Sloan has a Phase II/III study of Regorafenib Lomustine but Otie is ruled out because he has had two prior regimens of chemo, one of which was Avastin. In my search, I was looking for a Phase II or III trial as opposed to a Phase I. Most Phase I trials are trying to determine what is a safe dosage and frequency of drug to administer. I am hoping for something that has already proven to work----like the Duke D2C7 trial. As of this morning, we still have not heard back from Duke, and we are trying to breathe through the stress and anxiety of waiting.

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Well the phone call came late yesterday afternoon saying Otie was not eligible for the D2C7 trial at Duke because of outlying cells around his tumor that wouldn't allow the drug to be effective. They are suggesting Lomustine, which is confusing to me since Sloan Kettering seems to indicate that having treated with Avastin would rule out participation in a trial with Lomustine. I have asked Duke that question and will see what they say. So, basically, I am back to the drawing board if Lomustine gets ruled out. I really want to find a Phase II or III trial for a Gr IV Glioblastoma that has success with a non-methylated tumor. Anyone have any info? In the meantime, I will continue to search.

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begleycon | @begleycon | Jan 22, 2021

Call Dr. William Curry at Mass General in Boston!!! We were referred to him by Dr. Friedman @ Duke I am more than please. MG works closely with Dana Farber and they have put me on an Infusion Program which is one of their specializes. I am in my 14th month of Glioblastoma am glad I am there.

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otis123 | @otis123 | Jan 22, 2021

Can you tell me the name of the drug that you are having infused? I want to ask Duke about it and want as many details as possible. Thanks!

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begleycon | @begleycon | Jan 22, 2021

The infusion is a combination of my RNA that they put in every 3 weeks. They are using Pembrolizumab ( MK-3475 )and DFCI protocol is 16-225. Check out Mass General’s site when they talk about their infusion program which is one of they. Mass Gen and Dana-Farber /Harvard Cancer Center are partnering. MG will do second opinions I encourage you to call them.

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otis123 | @otis123 | Jan 22, 2021

Thank you for responding so quickly! I will contact Mass General and have also sent a message to Duke asking for Dr. Friedman's opinion of this treatment for Steve (Otie). Is your tumor MGMT methylated or not?

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