Glioblastoma Grade 4

Posted by bjh369 @bjh369, Wed, Jan 16 7:45am

After thinking I had a sinus infection for 3 months, then the left side of my face fell & the Doctor thought I had Bells Palsy….went to dinner with family 9-26-2018, passed out for a minute and my daughter said, that’s it your going to the ER. Next day had brain surgery to remove a 7.2cm tumor. Diagnosed 10-8-2018 with Glioblastoma grade 4. They call it the Terminator. That’s some pretty heavy news. I’ve been through my 1st round of temozolomide and radiation. I will have my determining MRI with contrast tomorrow on 1-17-2019 to see if any of that nasty treatment worked. Then I will see the doctor 1-25-2019 to see where we go from here. Is there anyone else on this discussion board with Glioblastoma?

Hi @bjh369
I moved your message to the Brain Tumor group (https://connect.mayoclinic.org/group/brain-tumor-support-group/) where you'll meet others living with and supporting others with glioblastoma like @martyc2016 @sandydominy1 @cbrice @jaxj o@renee08 @dfelix @IndianaScott @dawn_giacabazi @cure @nursnis and @johns66

You can read their stories in a these discussions:
– Glioblastoma Multiforme and Cognitive Loss https://connect.mayoclinic.org/discussion/glio-blastoma-multiforma/
– Glioblastoma Resection https://connect.mayoclinic.org/discussion/gbm-resection/
– Brain cancer: Oligodendroglioma https://connect.mayoclinic.org/discussion/brain-cancer/

Grade 4 is a heavy news to get. I know you've got some pretty serious tests and discussions coming up with your medical team. How are you feeling on the temozolomide and radiation treatment? And your emotional/mental state? That's got to be doing roller coasters right now I suspect.

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Hello @bjh369
I am so sorry you have to make this journey! But there is some hope with new trials and studies they are have some success. My mother passed away several years ago from Glioblastoma (GBM) and treatments were so limited because it was not discovered until very late stage 4. But I have a patient we are currently seeing with stage 4 GBM. 60% of the tumor was removed and she has completed her first round of temozolomide and 30 straight days of radiation and a treatment of TTFields.

In 2015, the Food and Drug Administration (FDA) approved a portable device called Optune for the treatment of glioblastoma, to be used in combination with temozolomide.

The device consists of transducer arrays that are placed on the patient's shaved scalp, and these deliver low-intensity, alternating electric fields called TTFields.
We are seeing encouraging results in this early phase. I would encourage at least discussing the option with your oncologist.

Praying for you & your medical team.
Dawn

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Thanks Dawn, Our relative has not been herself since the seizure before the GBM diagnosis. Her husband along with her siblings chose not to do treatment because right off the bat she had lost quality of life. She is now 6 months from surgery for removal and we do see quite a decline. She isn't and never has been able to care for herself – shower – move around etc. She has needed care for all daily activities since the seizure. Thanks for your note tho. I do appreciate it.

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Hello @bjh369 I am sorry to read of your recent diagnosis, but it is good you are here in the Connect community! As @colleenyoung mentioned, I am Scott (IndianaScott) and my wife was diagnosed with glioblastoma and fought her war for over 14 years. She, too, had a resection upon her diagnosis. They were able to remove three tumors. Her neuro-oncology docs were a fabulous support to her and to us as she maneuvered through this challenging disease.

She consistently beat the doctors' estimates on how she would do and showed us that there is still a lot of 'art' in the science when it comes to brain diseases. Plus the field and discoveries are changing at amazing speed! Most of the treatments available now weren't even known when she was diagnosed!

I am sure there are others who can add far more than me to this discussion, but encourage you to ask any questions you might have! This is a great and supportive group!

Strength, courage, and peace!

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Thank you.

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@nursnis

Thanks Dawn, Our relative has not been herself since the seizure before the GBM diagnosis. Her husband along with her siblings chose not to do treatment because right off the bat she had lost quality of life. She is now 6 months from surgery for removal and we do see quite a decline. She isn't and never has been able to care for herself – shower – move around etc. She has needed care for all daily activities since the seizure. Thanks for your note tho. I do appreciate it.

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Oh so sorry she can not care for herself. That would be so very hard. My surgery team did a great job and so far so good…so we shall see.

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@dawn_giacabazi

Hello @bjh369
I am so sorry you have to make this journey! But there is some hope with new trials and studies they are have some success. My mother passed away several years ago from Glioblastoma (GBM) and treatments were so limited because it was not discovered until very late stage 4. But I have a patient we are currently seeing with stage 4 GBM. 60% of the tumor was removed and she has completed her first round of temozolomide and 30 straight days of radiation and a treatment of TTFields.

In 2015, the Food and Drug Administration (FDA) approved a portable device called Optune for the treatment of glioblastoma, to be used in combination with temozolomide.

The device consists of transducer arrays that are placed on the patient's shaved scalp, and these deliver low-intensity, alternating electric fields called TTFields.
We are seeing encouraging results in this early phase. I would encourage at least discussing the option with your oncologist.

Praying for you & your medical team.
Dawn

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So very sorry for your loss. I will be starting on the Optune device the end of February to try to give me a few more years.

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@colleenyoung

Hi @bjh369
I moved your message to the Brain Tumor group (https://connect.mayoclinic.org/group/brain-tumor-support-group/) where you'll meet others living with and supporting others with glioblastoma like @martyc2016 @sandydominy1 @cbrice @jaxj o@renee08 @dfelix @IndianaScott @dawn_giacabazi @cure @nursnis and @johns66

You can read their stories in a these discussions:
– Glioblastoma Multiforme and Cognitive Loss https://connect.mayoclinic.org/discussion/glio-blastoma-multiforma/
– Glioblastoma Resection https://connect.mayoclinic.org/discussion/gbm-resection/
– Brain cancer: Oligodendroglioma https://connect.mayoclinic.org/discussion/brain-cancer/

Grade 4 is a heavy news to get. I know you've got some pretty serious tests and discussions coming up with your medical team. How are you feeling on the temozolomide and radiation treatment? And your emotional/mental state? That's got to be doing roller coasters right now I suspect.

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I did well on 6 weeks of temozolomide and radiation. Now I'll see tomorrow after my MRI if the temozolomide & radiation kept anybody from setting up a new house in my head!

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Hello Everyone,

My husband had surgery on August 24, 2018 and was diagnosed with a Glioblastoma Grade 4. This and the medical terminology is all new to us however we are learning and absorbing as much information as we can as he/we go through this process. Although his neurosurgeon and neurologist onocologist here are wonderful and helpful, I'm trying to research everything and everywhere I can for him. He went through the standard chemo, Temodar and radiation for the 6 weeks with no side effects after the surgery on 8/24. They performed another MRI on 11/9 and saw 2 tiny spots the biggest smaller than a grain of rice in the cavity where the tumor was removed. Another MRI was scheduled for 12/7 no change in the spots and still the 1/11 also showed no change. They weren't ruling out inflammation since there was no blood flow to the spots. He again went thru the Temodar 3 times after the 11/9,12/7 & 1/7 MRI, the five days on 21 off stronger doses on the second and third; he had no side effects. They did want to do another craniotomy after the 1/7 MRI because they do believe it could be tumor growth and put the gliadel wafer in but with no changes since the 11/9 reading my husband decided against it. In the meantime I went to MD Anderson for a 2nd opinion. They did diagnosis as a Glioblastoma Grade 4 IDH-Wild Type. I would like to hear from anyone that has this diagnosis and what treatments you're receiving or is having another craniotomy with the gliadel wafer what all would do. I will do everything I can to help my husband. Below are the readings for clarification.

IDH1 protein Status (Ihc) negative for mutual IDH1 p R132H expression
ATRX protein status (Ihc) retained wild type expression in glioma cells
p53 protein status (ihc) focally positive for nuclear expression
Ki-67 antigen index (MIB-1 ihc) up to 40%
1p/19q status (FISH) negative for codeletion
MGMT methylation status (sequencing) promoter methylation not detected.

Some questions I have due to some recent findings. I was also told about the DCVAX vaccine for this type of tumor, has anyone had success with it? Is there anything else out there? Is the gliadel wafer successful with this type of tumor? Lastly, if he does have the wafer inserted does anyone know if that would disqualify him for any clinical trials? Optune was also introduced to us early on when he was first diagnosed and the shock of just the diagnosis was enough that we didn't even want to consider this yet, too much all at once.

If anyone has any feedback on these findings or places that are excellent in treating this tumor with these type of results please share your thoughts .. We are now being in treated in a top cancer center in our area but will travel if necessary.

Thank you,

Donna, Buffalo NY

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@donnamar welcome to Connect. You'll notice that I moved your message to this existing discussion. I did this so you can connect with other members talking about grade 4 glioblastoma, like @bjh369 @nursnis @IndianaScott and others.

Donna, your husband is lucky to have such a thorough researcher and tenacious advocate by his side. You are asking a lot of great questions. I trust you are asking your husband's cancer team these same questions. You're so wise to also inquire about what treatments might disqualify him for other treatment options later on and specifically about clinical trial eligibility. I hope others who have experience with Optune the gliadel wafer and DCVax will also chime in.

Donna, how do you feel about his decision not to have the second craniotomy?

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Thank you and yes I ask many questions each visit and they do listen and will do whatever we wish even if it means also working with other hospitals or clinics. I learned a lot in these 6 months on a subject I never thought would ever affect us. I did agree with my husband at this time on not having the craniotomy as there were no changes on the last 3 MRI’s. I also got second opinions on not going thru with this surgery from others agreeing after he already made the decision. We ourselves made the decision. I’m sure he will go through again at some time but now wasn’t the time. He had his 4th MRI yesterday and we meet with the doctors tomorrow. Praying and also preparing for tomorrow’s results. I do have more findings I need to discuss with them. I try not to overwhelm my husband with all this I’m researching as he needs to concentrate on himself. If there is something from my research the doctors agree on I’ll share with him then. There’s so much out there to sift through. Yes I would like feedback on Optune, DCVax and glial wafers if anyone’s had experience. Thank you.

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He is also doing and feeling really well. He works 10 hour days (his choice) and we are very active. We ski, toboggan in the winter months and kayak, bike and hike in the summer.

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@donnamar

Hello Everyone,

My husband had surgery on August 24, 2018 and was diagnosed with a Glioblastoma Grade 4. This and the medical terminology is all new to us however we are learning and absorbing as much information as we can as he/we go through this process. Although his neurosurgeon and neurologist onocologist here are wonderful and helpful, I'm trying to research everything and everywhere I can for him. He went through the standard chemo, Temodar and radiation for the 6 weeks with no side effects after the surgery on 8/24. They performed another MRI on 11/9 and saw 2 tiny spots the biggest smaller than a grain of rice in the cavity where the tumor was removed. Another MRI was scheduled for 12/7 no change in the spots and still the 1/11 also showed no change. They weren't ruling out inflammation since there was no blood flow to the spots. He again went thru the Temodar 3 times after the 11/9,12/7 & 1/7 MRI, the five days on 21 off stronger doses on the second and third; he had no side effects. They did want to do another craniotomy after the 1/7 MRI because they do believe it could be tumor growth and put the gliadel wafer in but with no changes since the 11/9 reading my husband decided against it. In the meantime I went to MD Anderson for a 2nd opinion. They did diagnosis as a Glioblastoma Grade 4 IDH-Wild Type. I would like to hear from anyone that has this diagnosis and what treatments you're receiving or is having another craniotomy with the gliadel wafer what all would do. I will do everything I can to help my husband. Below are the readings for clarification.

IDH1 protein Status (Ihc) negative for mutual IDH1 p R132H expression
ATRX protein status (Ihc) retained wild type expression in glioma cells
p53 protein status (ihc) focally positive for nuclear expression
Ki-67 antigen index (MIB-1 ihc) up to 40%
1p/19q status (FISH) negative for codeletion
MGMT methylation status (sequencing) promoter methylation not detected.

Some questions I have due to some recent findings. I was also told about the DCVAX vaccine for this type of tumor, has anyone had success with it? Is there anything else out there? Is the gliadel wafer successful with this type of tumor? Lastly, if he does have the wafer inserted does anyone know if that would disqualify him for any clinical trials? Optune was also introduced to us early on when he was first diagnosed and the shock of just the diagnosis was enough that we didn't even want to consider this yet, too much all at once.

If anyone has any feedback on these findings or places that are excellent in treating this tumor with these type of results please share your thoughts .. We are now being in treated in a top cancer center in our area but will travel if necessary.

Thank you,

Donna, Buffalo NY

Jump to this post

I had surgery on 9-27-2018 & was diagnosed 10-8-2018 with glioblastoma grade 4. I believe my is unmethylated. I still have a small 1/4cm x 9mm x 4mm mass in lower right temporal by brain stem which is inoperable. I can understand why your husband would not want to go back through surgery…I wouldn't either. I've done my 6 weeks of radiation and temozolomide and will be starting double temozolomide for 5 days with 3 weeks off the end of February. Our doctor had me fill out paperwork for Optune a couple of days ago so if all goes well and we can afford it in a few months I hope to start Optune. I feel that if we can stay here on God's Earth for a few more years there may be a cure for this nasty beast.
If he doesn't want to do surgery have him look into Optune. I tried to get in to 4 or 5 different trials but unless the glioblastoma is reoccurrint…that means a whole new tumor starts up they won't take ya:(

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My husbands appointment was positive today. No changes in his MRI in 3 months. He feels great and we continue on with life as we always have. I and he believe that staying positive and active is key. He is still on the chemo pills each month 400 mg/day for 5 days but he has no effects or complaints. We have a ski trip planned for 2/15 weekend. He realizes things may change at some point but for now we and our two children our living life to the fullest!

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@donnamar

My husbands appointment was positive today. No changes in his MRI in 3 months. He feels great and we continue on with life as we always have. I and he believe that staying positive and active is key. He is still on the chemo pills each month 400 mg/day for 5 days but he has no effects or complaints. We have a ski trip planned for 2/15 weekend. He realizes things may change at some point but for now we and our two children our living life to the fullest!

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Congratulations and good to hear the positive news today @donnamar So nice to hear and enjoy hitting the slopes!

Cheers to your husband and whole family!

Liked by donnamar

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