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Plz guide regarding new therapies for glioblastoma that can help
My mother 68 years old is diagnosed with left temporal glioblastoma ( wild type ) grade 4 , operated on 23 April, started on proton beam therapy on 15 may with temozolamide . Today is day 7 of therapy . Plz guide regarding optune device and CART therapy or dendritic cell vaccines. What are new advances that can help
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@swatibhagat, so sorry to hear about your mom. Here are few related discussions that will interest you:
- Glioblastoma (GBM) trials and therapeutic devices (Optune) https://connect.mayoclinic.org/discussion/gbm-trials-ttfields-brain-device/
- Can anyone tell me about the Optune device for glioblastoma?https://connect.mayoclinic.org/discussion/can-anyone-tell-me-about-the-optune-device-by-novacure-for-glio/
- CAR-T therapy for glioblastoma? https://connect.mayoclinic.org/discussion/cart-glioblastoma/
Also see this video from Mayo Clinic
- Mayo Clinic Minute: Treatment and research of glioblastoma https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-treatment-and-research-of-glioblastoma/
How is your mom doing on treatment?
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1 Reaction@colleenyoung hello thanks a lot for information.I am a nephrologist in India . My mom is a slightly better , is on proton therapy along with chemo. Optune gio is not available in India . Is there any way we can get it . Another device Navitis youager is available in India . Will that help . My mom genetic testing came to be tert c124>t mutant positive , tp53 c 455 >t positive , Mgmt Negative. HPE IDH negative grade 4 wild type glioblastoma . kindly guide regarding further management and which device will help. Shall we go with Navitis voyager device.
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@swatibhagat, I suggest contacting the manufacturers to find out availability and if the treatment is an option for your mom.
Should you wish to request an appointment with Mayo Clinic experts, please start here: https://www.mayoclinic.org/international/support/representative-offices/mumbai-india
The Optune device has to be worn 18+ hours a day, etc…it is only minimally effective..,if you look back on this chat, I listed several books on glioblastoma that give both a medical and patient perspective on this cancer.
They helped me understand very well what my family member has, nearly identical to what your mom’s diagnosis. My family is a medical researcher and has chosen to not do Optune.
How old is your mom?
One thing I read about is that researchers are looking at drugs already on the market to try in conjunction with existing cancer drugs. One example is gabapentin. I personally use it for nerve pain-it was originally for seizures!
There are ta lot of medicines out there that are better for problems than for their original purpose-they are even looking at GLP-1!
If you cannot find the list of books, please reply and I will list them for you. All of them come together with a very good picture of how your mom is medically and also what this cancer really is.
Sometimes, the drugs are worse than the disease-my family member has let us know that it comes down to quality of life over months of feeling lousy from treatment side effects.