Recurrent GBM and treatment options?

Posted by amherst @amherst, Jun 21, 2019

Does anyone have an opinions or experience with Optune or Gliadel wafers for GBM cancer treatment? We are looking for treatment options for recurrent GBM. The standard GBM treatment (Temador and radiation ) plus one clinical trial with Keytruda did not work. Thanks

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Becky, Volunteer Mentor | @becsbuddy | Jun 21, 2019

@amherst Hello, and welcome to MayoClinicConnect. We’re not physicians, but we and the other members of MayoClinicConnect have lots of information and experiences to share. What has your doctor told you about the Optune system? And benefits and side effects? I’ll see what info Mayo has. I hope some others can contribute to the discussion

Becky, Volunteer Mentor | @becsbuddy | Jun 22, 2019

@amherst I was only able find out a little about the Optune system. It can be used in addition to chemotherapy or alone. Most of the side effects are related to the chemo. Only ones related to Optune are skin reactions at the device site and headache. Let me look around some more. Is there anyone who is also a patient at the doctor’s office you might talk to?

Colleen Young, Connect Director | @colleenyoung | Jul 29, 2019

@amherst, I'd like to also add my welcome and introduce you to other members who have been talking about the Optune system for glioblastoma, like @tealover102 @marcyprof @bjh369 @nursnis @IndianaScott and others. You may also be interested in this discussion.

GBM Trials - TTFields brain device https://connect.mayoclinic.org/discussion/gbm-trials-ttfields-brain-device/

I look forward to hearing from you and getting an update.

marcyprof | @marcyprof | Jul 29, 2019

Hello @colleenyoung , the Optune helmet is not available in Canada but if I could have this option, I would try it for sure.
For my part I receive a treatment of intra-arterial chemotherapy with Carboplatin which works well until now (the tumor regresses). Could this be an option for @amherst 's tumor recurrence? There are other possibilities, none of which have proved successful for all. You must try. Temodal works for some people with recidivism. (If the MGMT is positive, it seems that the chemo works better). The others take Lomustine or Avastin. There is ozone treatment as well that I plan to try one day. And the ketogenic diet combined with the DCA supplement seems to succeed to some, that I can do, so ... I do it!
My idea is to give a bad soil to my tumor. I do everything I can to hurt it. I'm hopeful that in all these actions we try, one of them will work.
"May the force be with you".

beahappy1 | @beahappy1 | May 13, 2023

Has anyone been on Keytruda for GRM4? Did it help?

Colleen Young, Connect Director | @colleenyoung | May 26, 2023

In reply to @beahappy1 "Has anyone been on Keytruda for GRM4? Did it help?" + (show)

@beahappy1, fellow members @begleycon and @otis123 share about Keytruda for stage 4 glioblastoma in this related discusion:
- My Husband's journey with Glioblastoma https://connect.mayoclinic.org/discussion/my-husbands-journey-with-glioblastoma/

Have you started Keytruda?

beahappy1 | @beahappy1 | May 27, 2023

In reply to @colleenyoung "@beahappy1, fellow members @begleycon and @otis123 share about Keytruda for stage 4 glioblastoma in this related..." + (show)

Yes, next week will be his 3rd treatment. He had one before his brain surgery and one every three weeks after. I know this is a clinical trial and I am hoping for the best. He is scheduled to have an MRI 3 weeks after his last Keytruda. His first craniotomy was in Jan 2022. Tumor grew back and he had to have another surgery April 2023. This disease consumes your whole life; not knowing what will happen the next day, or the next. It has been really rough but we are still hoping for the best. I am not ready to give up my husband to this disease so we will keep fighting. God is our strength.