Glioblastoma Grade 4

Posted by bjh369 @bjh369, Jan 16, 2019

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?

It is my understanding that MGMA-The O6-methylguanine-DNA methyl-transferase (MGMT) gene is located on chromosome 10q26.3 is a genetic marker.
Is this passed on from parents to children? If so, does one parent have to have or do both?

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This is over a year later from your post but I have grade 4 and will start my first round of radiation and chemo on Wednesday. How are you doing?

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@nelliegraywar

This is over a year later from your post but I have grade 4 and will start my first round of radiation and chemo on Wednesday. How are you doing?

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Hi @nelliegraywar and welcome to Mayo Clinic Connect. I'm tagging fellow members @bjh369 @donnamar and @marcyprof to invite them to share their chemo and radiation experiences.

Nellie, I'm glad to hear that treatment is continuing next week for you. Have you had surgery? What type of chemo and radiation are you getting?

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@colleenyoung

Hi @nelliegraywar and welcome to Mayo Clinic Connect. I'm tagging fellow members @bjh369 @donnamar and @marcyprof to invite them to share their chemo and radiation experiences.

Nellie, I'm glad to hear that treatment is continuing next week for you. Have you had surgery? What type of chemo and radiation are you getting?

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Surgery was not an option because the tumor crossed over. So I finally got approved after a 3rd appeal process with my insurance company for the proton treatments and temador chemo pills together for 6 weeks. I am ready to get this started the waiting has been the hardest part. I have to say I have the best support system ever in Mayo, family, friends, neighbors, work, etc. Even in our current state of events.

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@colleenyoung

Hi @nelliegraywar and welcome to Mayo Clinic Connect. I'm tagging fellow members @bjh369 @donnamar and @marcyprof to invite them to share their chemo and radiation experiences.

Nellie, I'm glad to hear that treatment is continuing next week for you. Have you had surgery? What type of chemo and radiation are you getting?

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Hi @nelliegraywar, for my part, I was diagnosed with Glioblastoma multiform 4 (GBM) in the fall of 2018 and have been on Intra-Arterial chemotherapy (a special treatment directed directly into the brain by the carotid artery) from December 2018 to February 2020. We have just stopped chemotherapy because results are mixed. It does not seem to shrink the tumor. But it didn't put on weight either, which is extraordinary when you consider that my prognosis was, according to my doctor, less than a year.

The tumor is deep, in the center of the brain, in a sensitive area (above the hippocampus). It is not operable and cannot be irradiated by radiotherapy.

I first had chemo at Carboplatin which I endured best. I managed to live fairly normally. Last summer we then changed the poison to Melphalan and then Methotrexate which was very difficult. My tumor is typical. We advance in small steps, we observe the MRI and we adjust. Since I had been in chemo for more than a year, the results were average and my general health was deteriorating, we decided to stop the treatments and see how the tumor would react. Once again, we are advancing slowly and adjusting.

You know that the "chemo-drug" (which I call the poison!) Is used to kill the tumor but, as it travels in the blood, it also destroys the cells of other organs, particularly the rapidly reproducing cells (blood cells, intestine cells …). We must therefore assess the benefit / cost ratio in our choices. For my part, the chemo started to damage me more and more for very little result.

Now let's see how the rest of my tumor reacts without treatment. I hope that it will not move. I try to convince myself that it will be fine, that if I leave it alone, it will leave me alone in return. After all, it is an atypical tumor. I imagine that it will give me several years to enjoy my life and spend time with my family, why not?

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@marcyprof

Hi @nelliegraywar, for my part, I was diagnosed with Glioblastoma multiform 4 (GBM) in the fall of 2018 and have been on Intra-Arterial chemotherapy (a special treatment directed directly into the brain by the carotid artery) from December 2018 to February 2020. We have just stopped chemotherapy because results are mixed. It does not seem to shrink the tumor. But it didn't put on weight either, which is extraordinary when you consider that my prognosis was, according to my doctor, less than a year.

The tumor is deep, in the center of the brain, in a sensitive area (above the hippocampus). It is not operable and cannot be irradiated by radiotherapy.

I first had chemo at Carboplatin which I endured best. I managed to live fairly normally. Last summer we then changed the poison to Melphalan and then Methotrexate which was very difficult. My tumor is typical. We advance in small steps, we observe the MRI and we adjust. Since I had been in chemo for more than a year, the results were average and my general health was deteriorating, we decided to stop the treatments and see how the tumor would react. Once again, we are advancing slowly and adjusting.

You know that the "chemo-drug" (which I call the poison!) Is used to kill the tumor but, as it travels in the blood, it also destroys the cells of other organs, particularly the rapidly reproducing cells (blood cells, intestine cells …). We must therefore assess the benefit / cost ratio in our choices. For my part, the chemo started to damage me more and more for very little result.

Now let's see how the rest of my tumor reacts without treatment. I hope that it will not move. I try to convince myself that it will be fine, that if I leave it alone, it will leave me alone in return. After all, it is an atypical tumor. I imagine that it will give me several years to enjoy my life and spend time with my family, why not?

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Just starting but as you did I am always watching and I keep a daily blog of my journey. Keep your head up and find what works best for your scenario as we all have just a little bit different issues. Mayo team, prayers, positive attitude and strong support are key! We go this!

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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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Hi so nice to hear your husband is doing well .Enjoy whatever you get .I wonder how did you do with optune as we are thinking the same . we are doing radaition without temodar and one month after radiation going for optune .

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