High grade Glioma - What questions should I ask?

Hello, I have an inoperable GBM and I am treated in Intra-Arterial chemotherapy with Carboplatin (for a year) and for 3 months, a mixture of Carboplatin and Methotrexate. I very well supported the chemos with the (nice) carboplatin but I badly support the chemos since we added Methotrexate. Are any of you receiving Methotrexate? What were your side effects (nausea, itching, hair loss, shortness of breath ...)? Do you have solutions, supplements to help get through this? Thanks for sharing

Hello, I have an inoperable GBM and I am treated in Intra-Arterial chemotherapy with Carboplatin (for a year) and for 3 months, a mixture of Carboplatin and Methotrexate. I very well supported the chemos with the (nice) carboplatin but I badly support the chemos since we added Methotrexate. Are any of you receiving Methotrexate? What were your side effects (nausea, itching, hair loss, shortness of breath ...)? Do you have solutions, supplements to help get through this? Thanks for sharing

Oh Eileen61! As I understand you! Last fall, my neurosurgeon did not dare give me my diagnosis, GBM grade 4. I learned it from another doctor who had my file in hand. I will never forget this November 7, 2018. I was devastated. After that, I spent several weeks feeling like a death row in "the death corridor." It's awful!
I quickly realized that my neurosurgeon had not told me anything because he knew that my diagnosis was not clear. Neuro-oncology is an embryonic science. It's a medicine that does not know much. The neurosurgeon who is following me now is reputed to be one of the best in Canada where I live, and even he often tells me that he does not know what is happening with my tumor. He is searching. It is terrible for the sick people who can not be treated, but at the same time, this bad knowledge is like a breach that gives way to hope. Some people survive. There are so many unknowns. Why would not be myself an exception? According to my readings on the Internet, I should have died in spring 2019. But I'm still there, and rather in good condition! Why would not you be an exception? One of those people who will have the chance to grow old?

The letter M of the GBM means Multiform. Each GBM is unique and even cancer cells in the tumor may be different from each other. It is a tumor that can take many forms. You are at the beginning of a long battle but maybe it will not be as difficult as you imagine now. No one knows the future. Perhaps the care that will be offered to you will not diminish you as much as you can anticipate. Request multiple opinions.

A familly doctor, new friend who has a GBM like us, talked to me about a very good book: Radical Remission of Kelly A Turner. She met cancer survivors and became interested in the commonalities they had. She has selected 9 points in common. I am reading it now. It helps me. It could also help you.

There are things you can do to build strength. You can do the ketogenic diet, take DCA and EGCG supplements, do yoga and meditation ... You have to breathe and rejoice to be always there, even in panic, it’s a proof that you are alive! Your pain touches me so much. Above all, do not be embarrassed to go for help. There are readings, like Irvin Yalom's, Staring at the Sun, which helps to get your head out of the water, to breathe.

No one knows the future. Not even the doctors, specially concerning brain tumor. We have unsuspected strengths in us that can help heal. I'm confident that you'll get by, that you still have good years to live. Breathe.
Kisses.
Catherine marcyprof

Hello @eileen61 I'm sorry to read of your diagnosis. I'm Scott and my wife fought her brain cancer for over 14 years with me as her caregiver. My wife had the same diagnosis and the times of 'waiting' were often worse than those when we were actively able to act and react. Those in-between times were always brutal.

I fully know every tumor is different and every patient is unique, so all I can offer (especially since I am not any kind of medical professional) are our experiences.

My wife always had me take notes of the conversations she had with her neuro-oncology doctors (at Mayo Rochester) so we didn't miss things as she was thinking about her next question or as the details and unknown terms began flowing. We also immediately signed HIPPA forms so the doctors had her approval to speak directly with our adult children so they could get the information straight from the source. This helped us immensely as I was not having to always be the information hub and they got exactly the same info we did, so they knew it was being sugar coated, items ignored, etc. by Mom or Dad. We also took care of all our advance directives, POA, estate plans, wills, etc. We saw this as the first block in what we viewed as the foundation of a fortress we would build for her from which she could fight her war.

Again, in my wife's case, she made the immediate decision her treatment goal was always going to be to achieve the best quality of life over quantity of life. This was the most important foundational piece for her. She never waivered from this goal.

Her most significant early questions were treatment options. She asked what every option was that the doctors could think of as treatment alternatives. We wanted to know them all. She also made sure to ask the potential adverse outcomes -- even if in the tiniest percentages of possibilities. We also made two early agreements between ourselves that formed two more of our foundation blocks: First was that we would use the doctors as the experts they were and rely on their knowledge and experience and therefore give their advice the weight it deserved. Second was that we would use each other as deciding counsel as we made treatment decisions. Once more people learned of my wife's diagnosis more and more of them felt 'obligated' to offer their advice on what they believed we should be doing when it came to her treatment decisions. Often, this really didn't help.

She also asked a lot of questions about how the Mayo doctors would interface with her GP in the future since we lived many states away.

She also asked detailed questions regarding each med she was prescribed. An early purchase was a drug dictionary to have on hand.

My wife said something very sage to me in the first week of her illness. At the time I did not fully recognize its value, however I did as time went on. She said "Scott, I'm the one fighting this war. It is MY war. I will fight it how I want, as I want, with the weapons I want, and in the manner I want. I need you to agree with this. Do you?" This became another of our critical foundational blocks upon which we built her fight. She did it HER way! This helped me be able to stand aside and let her have her emotions as SHE felt them at the time.

My acceptance of the fact she was the one fighting made it far easier for me to understand and adhere to each of her decisions. I would joke with her that she was the army and I was just her quartermaster making sure she had what she needed and wanted. I provided support and for the longest time I was not the decision maker. Once that changed then I was lucky to have her words to guide me along, knowing it was as she wished.

I am sorry this went on and one....I'm sure I missed some of your important questions and concerns. What other questions do you have?

I wish you stength, courage, and peace at this most challenging time.

This was helpful
My dad has just been diagnosed with glioma and the outcome doesn’t look good, as a nurse myself I felt that quality of life was more important, but he wants the surgery to fight it.. your right it’s his battle not mine, he will figh to stay on this planet as long as possible for our sakes..
Deviated isn’t the words to describe how I feel..
we found out toda and he’s already booked for a craniotomy next week .. I’m scared I loose my dad well his personality his ability to be himself or worse …
Just heartbreaking