Glioblastoma Grade 4

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.

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.

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:(

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!

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!

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?

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?

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?

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.

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?