Glioblastoma Stage IV Brain Cancer

Answered_Prayers

I am heartbroken to read about your wives. But I can say with confidence that God does not hate you. He is by definition Love! As a glioblastoma survivor of nearly 7 years, I can say that cancer is not easy, but possible because of faith.

I have asked many individuals many times: How do people without faith get through such a tough time. Do they try to find peace in the bottom of a bottle of alcohol or drugs?!?! The only way is to put your faith and trust in our Lord and Savior Jesus Christ! He makes all things possible, not easy. Scripture says that it will not be easy. There will be fiery trials.

Remember that anything that comes your way must first pass by God the Father and Jesus Christ our Savior. So, it comes with great purpose and importance. Please don’t give up or miss some of the blessings!!!

God Bless and love to all!!!

Research101

https://csn.cancer.org/discussion/comment/1588735#Comment_1588735

I understand what you are going through. My daughter was diagnosed in 2019 she was 39. She has had 3 recurrences and has done quite well. She has no deficits. They could not remove all of it. To be honest you really can't remove all of it. Just a few cells left behind can cause a recurrence. She had the Temodar and radiation after her first surgery. It made her tired, but she kept on working. She went on daily Temodar. 1st recurrence she did a phase 1 clinical trial. That one hit her hard n/v. They lowered the dose and she was fine. Long story short, progression vs radiation necrosis looks very similar on an MRI. This makes it challenging. So her MRI’s were stable until recently she appears to have slow progression. She will be starting Avastin next week. Here is my recommendation. Do your homework. Start looking at trials. Make sure you have a thorough DNA sequencing. This is key as there are many targeted therapies now that are very specific to the persons Tumor DNA. Go to the NIH website for trials to keep yourself informed. I will pray for your husband. Stay strong and stay positive. It does play a role in doing well. If you have any other questions let me know. I am a nurse which helps. Be brave you can do this!

PabloNasta

Good morning,

I am sorry to hear that you and your husband are going through this. I am a Glioblastoma Multiforme Stage IV cancer survivor and just recently became sober. My biggest problem was if anything would go wrong or array, my first thing was to go to alcohol or substances. Since becoming sober I have been able to realize what my biggest issues were and confront them. Even though they were hard and I wanted nothing to do with them, I stepped up and decided that the life i was living in the past was not the life I wanted to continue.

Since my Oncologist told me to go live my life, the only life I new before that was drugs and alcohol. And I needed to let go of my ego and my lack of self-worth, and learn to love myself. Since then I have seen things inside of me that I thought were completely lost.

Now, I am not saying that the only way to get through this is to become sober, but it is something that completely changed my life for the better.

Please feel free to contact me with anything you may be feeling or just need someone to talk to.

All the best!

Research101

GBM is challenging, but different for each person based on DNA sequencing, methylation, location, and age. There are so many variables on how a person responds to treatment. My daughter has GBM and is 5 years out. She only started with mild seizures in Sept of 2023. She is on Keppra for that. She has had 3 recurrences but has had some great luck with trials. She works and lives a normal life. You need to be proactive and seek opinions. My daughter's oncologist is from MGH in Boston and has been excellent, but you have to do your homework. I highly suggest contacting The Brain Tumor Network and Cancer Commons. These two organizations help you look at what is out there for treatment that is customized to the patient. This is not a one-stop shopping type of diagnosis. Every person has a different mutation. Yes, standard of care is the correct way to start, but get multiple opinions. I reached out to MD Anderson and MSK just to compare notes. You must have an organization that can look at the tumor specimen from every angle. I highly suggest reaching out to Protean Biodiagnostics who are collaborating right now with my daughter's Pathologist at MGH. They have a team that is looking at my daughter's tumor using the most advanced science and testing and they work closely with the NIH. The goal of precision oncology is to optimize and tailor each patient's treatment approach based on the genomic profile of the patient's cancer. Good luck on your path and be proactive. Leave no stone unturned.

DROG

My son, John, (Aug. 1, 1970) was diagnosed with GBM4 on July 28, 2023. Surgery was able to safely remove only about 15% of the tumor in the left front of his brain. He then went under radiation and chemo. On March 18 of this year John began Optune therapy. Recently, his oncologist (in Kingston, Ontario, where we live) suggested he get a second opinion at Sunnybrook Hospital in Toronto regarding his treatment. The consulting oncologist at Sunnybrook told us that he didn’t think the Optune therapy was any good at all, and told John he should stop it immediately and start infusions of Avastin.

As a result, John stopped Optune. 18 days after stopping Optune, and 4 days after his first bevacizumab injection he had his 3rd MRI of 2024 (Mar. 1, Apr. 12 and June 11). The April MRI showed that in roughly 2 months after the first MRI his tumour had grown in mass by 36%. However, the most recent MRI, taken in June, showed not only that the tumour had stopped growing but that its mass was reduced by 78% from the date of the previous MRI. From what I could find out, from his oncologist and online, that is quite a large effect from any treatment.

However, his recent MRI was taken 4 days after John’s first injection of bevacizumab. So, the question arose as to whether the 78% tumor reduction was due to Optune or the 4-day previous infusion (there were no other treatments or chemo taken during the period he was on Optune.) I’m inclined to bet that the 78% tumor mass reduction occurred due to the Optune therapy rather than the 4-day prior (to the third MRI) first infusion of bevacizumab? Have you But, what do I know? I am certainly not an oncologist. However, have you ever heard of such a dramatic effect of bevacizumab occurring within 4 days of a first injection?

Research101

My daughter started Avastin a few months ago and it has been very helpful. She is 5 years out since being diagnosed. Her first MRI result post starting of the Avasitn treatment was very positive. In regards to Optune verses the Avastin, I would not think it's the Avastin that made the difference. I can't imagine it would work that fast, but I am not a doctor and cannot say for certain. What I will tell you is that his quality of life will probably be better on Avastin. He won't be tied down with the Optune. It's about have a normal life as possible. Be strong!

mellow14y

atitic

I was diagnosed in 2020 with GBM 4in my right frontal lobe, after the resections, I lost the use of my left side and had to teach myself how to walk again; the nurses told me that I would only live another 12-14 months, I however, Said that I was not a statistic and am walking and almost completely back to normal after 4 years, I don't know if this helps, but I wanted to share my experience, I did 6 weeks of radiation and 1 round of temodar which i believe is the standard of care or SOC. if you have any questions, feel free to reach out to me