What treatments have worked for others after standard GBM therapy?

It's encouraging to hear you're feeling good during treatment and thinking ahead about next steps. Many community members explore various approaches after standard therapy, including clinical trials, dietary changes, and complementary therapies, though experiences vary greatly from person to person. Consider discussing potential options with your oncology team, as they can help evaluate what might be most suitable based on your specific situation and current research. This community has many knowledgeable members who may share their experiences, so hopefully others will chime in with helpful insights.

For a newly diagnosed GBM, Typically after the 6 wks, you wait 4wks until you have your post radiation(XRT) MRI. It’s important (and safe) to wait this time because just like a potato continues to cook when taken out of the microwave, the XRT AND swelling in the brain, from the XRT are still active (hopefully dex has kept the swelling at bay). Plus if you imaged it to early you won’t get an accurate picture due to the radiation change and edema. So, 1. wait 4 wks to get the post XRT radiation. 2. You also stop the oral chemo, temozolomide , once XRT is done. (Depending on how your labs have been acting you may have to continue getting labs until they’ve recovered to a safer level. Now, after the MRI, you will discuss with your team what’s called adjuvant therapy. This typically includes temozolomide at a different dose and different schedule, (depending on whether the GBM is methylated or not, and /or if the treatment is for newly diagnosed or, recurrent disease) There are a number of mutation markers/histology/cyrology that the drs look at that ultimately drive the plan of care. If there are trials then the drs should also present those. Does this help?

Thanks Wendy. That sounds like what the Doctors are suggesting. After my 6 weeks of radiation/ chemo. I take a break then they suggest I go back on Temodar for 6 months. Higher dosage but only 5 days out of each month. I have heard Temodar isn’t very effective for my unmethylated GBM. So I’m considering not taking it, and doing something out of the box. Maybe a Car-T Immunotherapy. I just don’t know much about this phase 1 trial at ucsf.

Please keep this commentary rolling!!! My wife has a GBM and just underwent surgery a few weeks ago that left her partially paralyzed and is now doing chemo and radiation ….. this is the beginning of our journey and it’s just a lot…..

I think you’re correct with Tem and being unmethylated. I would try a immuno clinical trial. Good luck and keep us posted! They’re making great strides since my brother had it. We will continue to fundraise until we find a cure. Xo

Thanks Nika. I am starting a clinical trial at UCSF next month. It’s CAR-T immunotherapy. I’ll keep you posted how things go once I start.

Be careful about special diets, there are a lot of people pushing various ones. Honestly, everything in moderation and just be healthy. Sugar doesn’t pass into the brain and isn’t going to feed brain cancer, despite how many say it does. My NO at the Alvord Brain Tumor Clinic confirm that. You can also look into Optune GIO, an electrical device that stops cells from replicating by disrupting the electrical process with tumor treating fields. Search for Novocure Optune Gio for more info. Your oncologist should be aware of it. An unapproved path that has to be self-funded, and that has 10 years of data to back it up, is multi-peptide personalized vaccines in Germany. CeGat/MVZ and IOZK in Germany are a couple of places that many are going to. It is supposed to be coming to the US this year for trial, so maybe in the future (too long into the future), it will be approved and covered. Look up a podcast by “That Brainy Blonde”. She’s a GBM patient and has made it 8 years after CeGat treatment and has interviewed the main doctor for them and IOZK. There are some other options as well.