Non operable grade 4 glioblastomas throughout the brain

GoldenHaze Member Posts: 1 Member
edited June 2022 in Brain Cancer #1

New here. Dont really know where to start. My 45 yr old completely healthy husband was diagnosed 2 months ago with a more rare, extensive grade 4 glioblastomas. He started every day higher dose radiation 2 weeks ago. 4 weeks left to go. Then they want to start chemo 4 weeks later. There are many tumors with no option of surgery. We are scared of chemo. I just csnt believe in 20 years time in this day and age, they are still with an average life expectancy of 14-18 months and do the same standard care of radiation and chemo. You get a diagnosis and are sent fending for your own resources of knowledge, support, etc. Literally handed no literature on the topic or even a printed off pieve of paper telling you exact medical diagnosis.

Who has been through this more rare situation as us that can share some experiences, treatments, best US doctors/hospitals, stories, side effects, or any hope.


  • lammie
    lammie Member Posts: 2 Member

    Diagnosed with grade 2 glioblastoma,but oncologist believed it was higher grade and biopsy just didn't contain that section. They called it diffuse. The location of mine was attached to the area that has the speech center so they considered it inoperable. The treatment has remained pretty much the same for 20 years I was told. Don' believe the time frame they give you. my neurologist quoted me around 18 months. That was over 3 years ago. I had 30 daily sessions of radiation along with chemo drug Temodar. It really makes you VERY tired. I took Amtrak for nausea. Learned later if you take the chemo pill at night and go to bed you hopefully can sleep through the symptoms. I had a small break from chemo and then took it for 5 days out of the month. Did that for a year. Off several months and slight growth so back on it. I used the Optune electrodes on my head. Some think they help and some don' t. Look it up to see what it is. It was a challenge. My oncologist went into research. and the one I now have isn't convinced it makes that much difference for the hassle. He came from MD Anderson which is highly rated here in Texas.Right now my tumor is stable for last 3 visits. Having MRI every 2 months and 12 sessions of chemo 5 days old a month. I credit faith and God for my results because it is very hard to treat since it is hard for drugs to get into the brain. It is called the blood brain barrier and protects the brain, but causes a problem in our case. I agreed to try a trial if one became available because there is no cure. I don't know your location, but both of the oncologists I have had have written articles and been involved in trials.(just not at the present).Sorry if this is more than you wanted. I have done well so far and was in the medical field, but God has gotten me to this point I believe because it is a real challenge to have and treat, but don't let them give you a time line. There is only One who knows that.

  • earley
    earley Member Posts: 1 Member

    There is one FDA approved chemo treatment for high grade cancer, Temozolomide/Temodar, because it’s been proven to cross the blood brain barrier. The drug also attacks the tumor cells and tends to be less aggressive towards the bodies healthy cells.

    There are now some trials using immunotherapy to build up the natural response from Tcells and other parts of the immune system.

    Those of us with high grade tumors don’t have a lot of options. The treatment is standard for all of us with a grade 3 or higher.

    my first round of chemo treatment I was fairly healthy, I experienced vomiting and weight loss in the begging but eventually I figured out what worked for me. I took my anti nausea medication an hour before my chemo and three hours after I took a different anti nausea. Peppermint oil in a defuser helps with smells.

    radiation is different for everyone. The best thing is to ask the doctor and nurses a ton of questions.

  • salburyb
    salburyb Member Posts: 2 Member
  • lammie
    lammie Member Posts: 2 Member

    I used it 943 days or almost 3 years. My husband had a spread sheet to figure up my times. I was very faithful with it and had a percentage around 80 or more of the time. They want it on at least 18 hours a day. My biggest problem at the end was a rash on my head. I was taking the Temodar that someone else mentioned. I stopped eating or drinking for an hour before taking Zofran and waited 30 minutes and took the Temodar. My oncologist has his patients take it at night before bed and you hopefully sleep through the side effects. It worked well for me. I have been stable now for 6 months and am going for an MRI every 3 months rather than the 2 months at first. I have done way better than I was told I would. I now have hair after shaving my head for right at 3 years and wearing wigs. There is nothing easy about it, but there is hope and my motto is one day at a time so I don't borrow trouble. Prayers for all. Linda

  • salburyb
    salburyb Member Posts: 2 Member

    So my wife is on the Optune. We have been doing 3 days on and 1 day off. She has little energy and does take temodar at night 5days on and 23 off. Hopefully she will get some energy back. Her WBC count is low and that contributes to the low energy levels. Thanks

  • happyparisingh
    happyparisingh Member Posts: 1 *

    i'll pray for your wife. Shesounds like a nice person