Questions about glioblastoma resection, radiation afterward

Thanks for your response. My brothrt in law is her primary care give and he is overwhelmed right now.  I'm going to heil him.  Thanks again.  Dennis

Hi @dfelix,
I add my welcome to Scott's. You'll notice that I moved your messages to a discussion thread where members are talking about GBM and clinical trials. I encourage to read through the past messages. Here you'll meet @taterjoy @user_che69bc66 @cure @sandydominy1 and @dawn_giacabazi, some of whom have experience with clinical trials.

We welcome your questions.

Hello, I'm helping a friend who was diagnosed with stage IV GBM on Jan. 26. She had resection and has been recommended to start radiation and chemo, which was supposed to begin on Monday. She wants to do more research before she decides to pursue treatment. I think she's most concerned with how to know if her quality of life will be affected so badly by treatment that she'd rather have a few months of good quality of life than any additional time treatment might buy her. We live in Denver. She is 68, in excellent health (other than GBM) and great physical shape. The radiation oncologist said that was a good indicator of how well she would tolerate treatment. If anyone has any suggestions about treatment or resources in Colorado I would love to hear them.Would radiation alone cause fewer side effects and be a possible option? Or chemo alone? We are going to a local brain tumor support group today, which I hope will help. She is aware that statistically they are known to work better in combination but is open to not doing that if it helps her quality of life. I'll also be asking questions of some of the members about clinical trials. Thanks for your help!

It seems like the clinical trials are for people who have already tried radiation and chemo. Does anyone know of a trial for someone who would rather pursue something instead of radiation and chemo? Thank you!

Hello @cbrice Nice to e-meet you here. Sorry to hear of your friend's health challenges. They are always tough.

My wife was 49 when she was diagnosed with brain cancer. She fought her war for 14 years while I was her primary caregiver. So my viewpoint only comes from that which I witnessed and spoke to her and her medical team about.

I would offer this one bit of advice, which we found helpful. Cancer, and especially brain cancer, is a unique disease which attacks each patient in a novel and sometimes very individualized manner. My wife made her care decisions based on things she decided before her first medical intervention, which happened to be an emergency craniotomy, so right away you can see her case is different. She however said she wanted quality over quantity and made her subsequent decisions following that with what she called her Main Directive. She made many other choices along the way, but they were all guided in light of her overarching initial decision.

I won't publicly say what her care decisions were since I am sure they were unique to her situation, area of the brain affected by the tumor, and our family situation. None of which might be applicable to any other patient, so describing them could serve to raise or crush another's expectations.

I will also say there is no such thing as having too many early discussions with your medical team! My wife had fabulous support from her neuro-oncologist at Mayo Rochester and her neurosurgeon there as well. They, more than anyone else, helped her become at ease with her decisions.

Peace, courage, and strength

Thank you for the quick reply. I'm very sorry about your wife, but am always thrilled when I hear anyone has lived longer than expected with this disease. I think the frustrating thing for my friend is that everything is so individual and unique. I understand her desire to find some answers but, as you know, a lot of it depends on her individual responses. Peace to you too!

Is there a number to call to discuss treatment options and side effects and clinical trial options with someone at Mayo?

cbrice, I don't know the "current" answer, but my friend who has GBM (diagnosed 3+ years ago, and still living) refused radiation (against her ONC's orders), and instead had surgery including implantation of a Gliadil wafer installed at the tumor site; with chemotherapy ongoing, intermittent. She is still alive at 3.5 years, and doing well despite that they could not remove the entire tumor. Her husband and she chose these options after consulting with Oncologists At Duke University to assist in making choices (she lives on East Coast); his choices were based on the GBM cells particular to her tumor subtype and her tumor location/resection . I would suggest you consult with a GBM specialist (please see Belinda's comment above with a list, and comments but "cure" and others) at Mayo or another top GMB center, if possible. They can discuss your subtype, location, and appropriate protocols & trials options. In my friends case, accepting the Wafer and surgery did preclude her from some clinical trials, but she is still visiting Duke for scans every few months to stay close to clinical trials if needed in the future. She read a book about anti-cancer foods, and eats an organic diet primary based on vegetables (fresh, and cooked in stir fries), oatmeal, ginger, turmeric, lentils, anchovies, olive oil, organic bran muffins fresh cranberries. Gluten-free, and no preservatives, colorants, etc. She has worked with Polestar Pilates therapists to regain as much of her limb function as possible. She also avoids watching News or reading News in the news paper. Walking the hall daily and meditation are two of her other routines. I hope you will find appropriate help and guidance, and wish you (or your relative/friend) the best.

@cbrice
Welcome to connect.
I am so sorry to read about your friends diagnosis. My mother was diagnosed 3 years ago with stage 4 GBM. She was not a surgical candidate as over 100 fingers wrapped her brain and through her brain and develop tumors at the end of three of the fingers.
She chose quality over quantity he and refused them to attempt the dissection of two of the tumors she started chemo and radiation the very next day. Radiation 30 days straight and she was on a chemotherapy drug temozolomide. The treatments slowed down the progression for about 4 months before she went to her forever home.
Here is a link to the Mayo Clinic:
http://www.mayoclinic.org/diseases-conditions/glioma/home/ovc-20129412
Here is some useful (updated) information you can print out if that helps. http://www.mayoclinic.org/documents/mc2024-0409-pdf/doc-20078916

Prayers
Dawn

I appreciate your time!