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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@colleenyoung

@pnf24, I can imagine that your new diagnosis came as a shock. It seems that you've won a lottery you didn't want to enter in getting 2 different types of brain tumors - one benign, one not.

How are you doing with treatment? What kind of radiation are you having?

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I am having 6 weeks of radiation for a total of 6000 (?eGY) by linear accelerator, Monday-Friday and during the same time, I am taking temodar Monday-Sunday

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@pnf24

I’m a little unsure if I’m posting in the correct location, but here goes: In 2002 I was diagnosed with an atypical meningioma in the left frontal lobe. At the same time, my NS found there was a small parasagittal tumor that he advised leaving. Over the years, I have grown a few small tumors that seemed to grow to about 1 to 1.5 cm before they either necrosed or just stopped growing. Last year was the most recent one and me NS suggested I consider gamma knife as it had appeared and grown a bit more than the others during a 2 year period (the length of time between my scans). I was put on an every 6 month MRI schedule. The first last Sept was fine, but on March 29, 2024 a new tumor was found in the left frontal lobe-basically at the site of my original tumor. Because it had popped up and grown rapidly to about 1-1.5 cm, my NS recommended surgery which I had on 5/9/24. Needless to say, I was shocked when the path report came back as possible high grade astrocytoma or glioblastoma pending reports from Mayo and NIH. The final report came in this afternoon showing GBM. I actually started the rad/chemo regimen last week. As of today, I’ve had 5 rad treatments and 7 TMZ. So far and fingers crossed, I have not had any serious side effects. I’m tired, but really blaming it on surgery just a month ago. I told the Neuro APN that I didn’t realize a benign tumor could recur as a malignant one. She replied that it didn’t. They felt thus to be an entirely different entity. Just wondering if others have had this type of BT history?

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@pnf24, I can imagine that your new diagnosis came as a shock. It seems that you've won a lottery you didn't want to enter in getting 2 different types of brain tumors - one benign, one not.

How are you doing with treatment? What kind of radiation are you having?

REPLY

I’m a little unsure if I’m posting in the correct location, but here goes: In 2002 I was diagnosed with an atypical meningioma in the left frontal lobe. At the same time, my NS found there was a small parasagittal tumor that he advised leaving. Over the years, I have grown a few small tumors that seemed to grow to about 1 to 1.5 cm before they either necrosed or just stopped growing. Last year was the most recent one and me NS suggested I consider gamma knife as it had appeared and grown a bit more than the others during a 2 year period (the length of time between my scans). I was put on an every 6 month MRI schedule. The first last Sept was fine, but on March 29, 2024 a new tumor was found in the left frontal lobe-basically at the site of my original tumor. Because it had popped up and grown rapidly to about 1-1.5 cm, my NS recommended surgery which I had on 5/9/24. Needless to say, I was shocked when the path report came back as possible high grade astrocytoma or glioblastoma pending reports from Mayo and NIH. The final report came in this afternoon showing GBM. I actually started the rad/chemo regimen last week. As of today, I’ve had 5 rad treatments and 7 TMZ. So far and fingers crossed, I have not had any serious side effects. I’m tired, but really blaming it on surgery just a month ago. I told the Neuro APN that I didn’t realize a benign tumor could recur as a malignant one. She replied that it didn’t. They felt thus to be an entirely different entity. Just wondering if others have had this type of BT history?

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@rosez, I thought I'd check in with you. How are you doing?

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@colleenyoung

@manty54, thinking of you as you and your prepare to start chemo and radiation. How are you doing?

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Thank you Colleen, my husband is going to start his chemo/radiation tomorrow finally after delaying it so much due to insurance authorization. We are hopeful and praying for good outcome.
We had mover had to deal with insurance before thank God, but honestly I don’t think they really care about human life. When they have to get our money for monthly premiums and copays they don’t delay but now that they have to pay for the service that we need they keep delaying the process. It’s really frustrating. We not only have to deal with the dresses but also all the other stuff and they make it harder on you. I’m so mad

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@manty54

I’m so happy for you and your wife. It’s great news that the MRI didn’t show any tumor growth and you can spend sometimes in Arizona. I hope she continues to improve and get better. As for my husband we are still waiting for insurance authorization for radiation which sucks. His condition is deteriorating. He is becoming very imbalanced and starting to have hiccups these are all the signs that he had before surgery that got him to ER. I’m so nervous thinking that maybe the tumor has come back and we are going to go through chemo and radiation for no reason just for more torture 🙁
He had his surgery on December 2nd and is going to start chem/rad on January 18th. Is this too
Late. They keep telling me that it is not but I’m thinking it is. The radiation doctor did a CT with contrast to do the planing and when we asked him if there is any changes he said nothing significant. So why is he getting worse? God, how can I wait another 9 days for the start of the treatment? Waiting impatiently! Hope everyone else is in better situation. We are praying for everyone. Nobody should go through this.

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@manty54, thinking of you as you and your prepare to start chemo and radiation. How are you doing?

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@ruthannray

My husband has Glioblastoma. Diagnosed after a biopsy on Oct. 16. Inoperable other than the needle biopsy. Radiation and chemo started simultaneously on Nov. 20, which felt like forever to wait. But we were told he had to sufficiently heal from the surgery in order to tolerate the radiation. The tumor had grown noticeably between Oct 16 and Nov 20, which was a concern.
His MRI on Jan 5 showed considerable reduction in tumor size from Nov 20. The doctors are very pleased with this result given their hope was to stabilize the tumor size now. Second round of chemotherapy started yesterday. First round dose was 270, now at 375. He is 86, so this is hard for him. But he’s doing rather well other than diarrhea. And he no longer reads much, a huge change.
I cannot imagine someone going through this process without a family member or friend acting as a patient advocate and intermediary.
Good luck to all on this journey.

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It is good to hear that your husband is making some progress. It seems like a very aggressive dose of chemo, but guessing that is due to the tumor being inoperable. You and your husband are in our prayers.
Dan

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@manty54

I’m so happy for you and your wife. It’s great news that the MRI didn’t show any tumor growth and you can spend sometimes in Arizona. I hope she continues to improve and get better. As for my husband we are still waiting for insurance authorization for radiation which sucks. His condition is deteriorating. He is becoming very imbalanced and starting to have hiccups these are all the signs that he had before surgery that got him to ER. I’m so nervous thinking that maybe the tumor has come back and we are going to go through chemo and radiation for no reason just for more torture 🙁
He had his surgery on December 2nd and is going to start chem/rad on January 18th. Is this too
Late. They keep telling me that it is not but I’m thinking it is. The radiation doctor did a CT with contrast to do the planing and when we asked him if there is any changes he said nothing significant. So why is he getting worse? God, how can I wait another 9 days for the start of the treatment? Waiting impatiently! Hope everyone else is in better situation. We are praying for everyone. Nobody should go through this.

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We had a delay between the surgery and beginning of chemo and radiation also. It is to allow the brain to heal sufficiently from the surgery. In my wife's case she needed that time to heal, and it turned out well in her case. It will probably be a difficult time adjusting to the chemo and radiation as there is some experimentation adjusting to the side affects of those procedures.
Prayers to you and your family.

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@manty54

I’m so happy for you and your wife. It’s great news that the MRI didn’t show any tumor growth and you can spend sometimes in Arizona. I hope she continues to improve and get better. As for my husband we are still waiting for insurance authorization for radiation which sucks. His condition is deteriorating. He is becoming very imbalanced and starting to have hiccups these are all the signs that he had before surgery that got him to ER. I’m so nervous thinking that maybe the tumor has come back and we are going to go through chemo and radiation for no reason just for more torture 🙁
He had his surgery on December 2nd and is going to start chem/rad on January 18th. Is this too
Late. They keep telling me that it is not but I’m thinking it is. The radiation doctor did a CT with contrast to do the planing and when we asked him if there is any changes he said nothing significant. So why is he getting worse? God, how can I wait another 9 days for the start of the treatment? Waiting impatiently! Hope everyone else is in better situation. We are praying for everyone. Nobody should go through this.

Jump to this post

My husband has Glioblastoma. Diagnosed after a biopsy on Oct. 16. Inoperable other than the needle biopsy. Radiation and chemo started simultaneously on Nov. 20, which felt like forever to wait. But we were told he had to sufficiently heal from the surgery in order to tolerate the radiation. The tumor had grown noticeably between Oct 16 and Nov 20, which was a concern.
His MRI on Jan 5 showed considerable reduction in tumor size from Nov 20. The doctors are very pleased with this result given their hope was to stabilize the tumor size now. Second round of chemotherapy started yesterday. First round dose was 270, now at 375. He is 86, so this is hard for him. But he’s doing rather well other than diarrhea. And he no longer reads much, a huge change.
I cannot imagine someone going through this process without a family member or friend acting as a patient advocate and intermediary.
Good luck to all on this journey.

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@djw

I am late in posting a summary of recent events, but in this case it is good news. The results of the MRI that my wife Anne had on Dec 26- "do not show any evidence of tumor growth" We were very happy with that result. With the approval of Anne's oncologist we headed south to Arizona where we hope to stay until late February. Anne has to be back in Kansas City for the next MRI on Feb 27. She will continue with her Jan and Feb chemo cycle here in AZ. are cycles 4 and 5. Physically she is doing ok with the exception of the chemo week and half of the following week when she begins to recover. There has been much confusion and back and forth with medical personnel regarding her chemo dose. It was finally agreed to be 180 mg per day during the 5 day cycle. Anything more that that and the side affects of weight loss, memory impairment and balance are too severe.
I must say that anyone going thru severe health issues of any kind must have a representative present to assist them during the process. It is necessary in order to convey to medical personnel a proper summary of results. It is also necessary to avoid errors and a sense of balance in dealing with medical personnel. I don't know if those personnel are over worked or what, but we had several incidents that would have led to problems had I not challenged what was being said. I don't see how any patient in these situations can adequately represent themself, especially when they have some impairments to begin with. Sorry for the side rant.
Anne and I actually took a walk yesterday of almost a mile. Today we went to the library and she got some books for reading. We are both extremely grateful for this additional time God has given us. We are thankful for the assistance of family and friends. We are thankful for the prayers. Our prayers go out to all others in similar situations.
Dan

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I’m so happy for you and your wife. It’s great news that the MRI didn’t show any tumor growth and you can spend sometimes in Arizona. I hope she continues to improve and get better. As for my husband we are still waiting for insurance authorization for radiation which sucks. His condition is deteriorating. He is becoming very imbalanced and starting to have hiccups these are all the signs that he had before surgery that got him to ER. I’m so nervous thinking that maybe the tumor has come back and we are going to go through chemo and radiation for no reason just for more torture 🙁
He had his surgery on December 2nd and is going to start chem/rad on January 18th. Is this too
Late. They keep telling me that it is not but I’m thinking it is. The radiation doctor did a CT with contrast to do the planing and when we asked him if there is any changes he said nothing significant. So why is he getting worse? God, how can I wait another 9 days for the start of the treatment? Waiting impatiently! Hope everyone else is in better situation. We are praying for everyone. Nobody should go through this.

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