Cousin with newly diagnosed Stage 4 glioblastoma

PJ47 Member Posts: 376


I am asking the group for some direction for my cousin.  Those who have experience with glioblastome (inoperable) stage 4 and have experienced the standard of care chemo/radiation.  If you have any experience with "novel" therapies or clinical trials on the East Coast (they live in TN) I would appreciate some ideas and experiences.  The diagnosis was given one week ago and the biopsy and path report was reviewed today.  Tissue is being sent to Rochester NY for Genetic testing.  Thats about all I know.  Have reviewed the clinical trials for newly diagnosed glioblastoma patients on the .gov web site and have organized them into several categories for her. 


Thank you for any help,



  • fminert
    fminert Member Posts: 2
    edited April 2019 #2

    My husband was diagnosed with grade IV glioplastoma tumor in his brain 2 months ago.  It was 8 cm and was removed a few days after diagnosis.  He is nearly done with radiation treatments and will get a month off of chemo and radiation.  I am wondering what to expect and how extensive our family activities can be this coming summer.  My kids were thinking a cruise and some travel together as a family.  Will my husband feel up to this.  Right now he is so very tired all the time.  Any activity wears him out. 


  • KEJenkins
    KEJenkins Member Posts: 2

    Hi PJ,


    I'm wondering how your cousin is doing and whether you came across any trials? My husband was diagnosed with grade IV glioblastoma in June. He's had surgery and is currently undergoing chemo and radiation. I know that for 95% of patients with glioblastoma, the prognosis is about 15 months. He has a rare genetic mutation but they don't know if that will cause is prognosis to be any better. I'm struggling with this so much. It doesn't seem like there is anything that can be done.