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Wed, Feb 6 8:26pm · Glioblastoma Grade 4 in Brain Tumor

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!

Tue, Feb 5 4:21pm · Glioblastoma Grade 4 in Brain Tumor

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.

Tue, Feb 5 4:17pm · Glioblastoma Grade 4 in Brain Tumor

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.

Tue, Feb 5 2:55pm · Glioblastoma Grade 4 in Brain Tumor

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