Orig. diagnosed '13: AA gr. 3, stable for 5 years, returned in 2020 as GBM - new treatments? Age 29

FUcansah
FUcansah Member Posts: 2
edited December 2022 in Brain and Spinal Cord Tumors
Hi, I'm a 29 y/o female. I'm resuming my 2nd cycle of oral chemo (CCNU/Gleostine) this week. I started in Sept. but my counts dropped to an unsafe level. I want to do more besides chemo, but don't know what. I'm getting a functional MRI tomorrow to see if the new mass is able to be safely removed. In 2013/14 (when I was diagnosed): I had 2 craniotomies, 12 months Temodar, and IMRT radiation. In 2020: MRI guided laser ablation this October, CCNU (1 cycle), and an off-label leukemia drug that didn't work. I'm curious about immunotherapy but have heard mixed reviews. Also Keytruda? I'm practicing reiki and reflexology.

Comments

  • Carool
    Carool Member Posts: 787
    edited January 2021
    FUcansah (great handle!), I hope you got encouraging information from your MRI. I’m a breast cancer survivor, and I’ve never had Kaytruda. I see that you also posted in WhatNext’s brain cancer section. I hope you get some answers. Wishing you all the best.
  • beachbum5817
    beachbum5817 Member Posts: 238
    edited January 2021
    FUcansah. I also like your handle. I don't have any experience to offer you with your kind of cancer. I just wanted to let you know that I will be thinking of you and hoping that they can find the mix of drugs needed to help you. Let us know how you are doing. Take care.
  • Jayne
    Jayne Member Posts: 134
    edited January 2021
    Like the others, wishing you answers and encouragement!
  • FUcansah
    FUcansah Member Posts: 2
    Thank you @Carool @beachbum5817 @Jayne
    Since posting that I got the MRI results, which revealed that if I do need more surgery it would be safe.

    So now I'm looking into GammaTile, https://www.gammatile.com/ - has anyone had any experience with this?

    Thankful for any responses : )