Glioblastoma Grade 4

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?

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!

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

I am just now searching and saw your post. My husband had the wafers and it did disqualify him from most studies. They never told me that before placing them. How did it go for you?
Any help would be greatly appreciated.