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@dfelix

My sister has GBM and had surgery and chemo and tumor has come back. Looking for a good FDA study or some newer technology. Or just some advice from people with similar experience. Thanks

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Replies to "My sister has GBM and had surgery and chemo and tumor has come back. Looking for..."

Good day, @dfelix I am Scott and it is nice to e-meet you here. I am sorry for the travails your sister is undergoing. I send peace, strength, and courage. My wife fought GBM for 14 years. After her diagnosis her tumor remained slow growing, then it suddenly accelerated. Due to the location and other considerations the only intervention she chose was an early resection. Even when her tumor got more aggressive at Stage IV she chose home hospice as her option. She defied the doctors' best guesses of 6 months or less and won her war for 14 months. Unfortunately I have no advice on newer technologies, but I am sure they are legion! I know Dr. Daniel Lachance at Mayo Rochester has been involved in some truly phenomenal research on DNA fighting approaches to brain cancer.

I was her 24/7 caregiver during her war so if you have any caregiving questions feel free to ask.

Peace!

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!

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

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

@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'd get radiation/chemo. My hubby did and he was on maintenance chemo for 12 months. No demonstrable side effects. If doing chemo, it was recommended to us to take the nausea pill 30 minutes BEFORE chemo. No nausea. He's got a great quality of life (going on European river cruise in October). Doing nothing was never an option for us.

There is a recent review article on Glioblastoma entitled, ´Glioblastoma: Current Therapies and Recent Therapeutic Advances´at personalize my medicine dot com
You may find it useful.