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Brother Recently diagnosed with GBM- lives in Costa Rica

Karen Trimble
Karen Trimble Member Posts: 1
edited March 2014 in Brain Cancer #1
Hello there. I am needing some direction. My brother who lives in Costa Rica, was diagnosed via a brain biopsy this past Friday as having a GBM grade four. The tumor is 5.5 by 5.5cm in is frontal/temporal lobe, in the middle of his brain. They say it is inoperable and that nothing can be done. They gave him 6 months-1 year of life.

I am looking for some alternatives and wondering what advice you have...would fly him home to Washington state if needed.

I have read about radiation along with Temador, as well as Avastin. Is it true that Temador only works if the MGMT gene is inactive?? Help!! A bit overwhelmed here!

Thanks,
Karen

Comments

  • Beckymarie
    Beckymarie Member Posts: 357
    Dear Karen,
    Very sorry to

    Dear Karen,
    Very sorry to hear of your brother's battle. My husband was diagnosed in March 2009 with stage IV glioblastoma, also inoperable. We did go the radiation and Temodor protocal which had very short-term benefits. We then went to Avastin and I feel he got the most benefits from this drug. We too were told 6 mos to a year. He lived for 15 months. Since his passing I've read of new clinical trials, one involving a "vaccine" made from the tumor itself. I think you would benefit from having your brother seen at a teaching hospital. We went to UMass Medical Center in Worcester, MA. It is a difficult battle and I wish you and your brother the ver best.
  • arkangel
    arkangel Member Posts: 8
    Brother Recently diagnosed with GBM
    Hi Karen,

    Sorry to hear about your brother. Is he on any type of medication right now? My uncle in Canada has stage III liver cancer and I am also looking alternative treatments for him in China, as this is where I am currently based. I'm looking into Tradition Chinese Medicine (TCM) as well as alternative therapies offered in China. In Beijing there are several well known TCM hospitals that specialize in cancer. Based on my research so far, there are several alternative cancer therapies that are being offered in China that are approved for use in China and may show promise for cancer patients. These treatments however are not FDA approved, as they have not passed FDA regulations in the USA.
    For my own situation, my uncle is willing to look at other alternatives since the cancer has metastasized.
    I wish you all the best and hope that this bit of information can help you in your search for alternative cancer treatments.

    TONY
  • MAJW
    MAJW Member Posts: 2,510
    There IS TREATMENT
    Karen.....he shouldn't accept that there is no treatment, even though it is pallative treatment....My best friend has been fighting this for 2 years now.. She initally had surgery, the trouble with a glioblastoma is it has "fingers" that reach into parts of the brain that cannot be surgically removed........she had 6 weeks radiation, and 16 months of Temador......it kept it bay....and Temador is an ORAL chemo.....she is now have IV infusions of Avastin, Carboplatin and one other drug.....Duke University in Durham NC has a physician, Dr.(Henry, I think) Friedman, who is an authority on Glioblastomas.......He has been treating my friend after being treated at Wake Forest Baptist in Winston- Salem NC......I would encourage your brother to come back to the states and get treatment.....

    I am so very sorry your family is dealing with this........it's an ugly, horrible disease
    Peace be with you
  • Mama G
    Mama G Member Posts: 762
    MAJW said:

    There IS TREATMENT
    Karen.....he shouldn't accept that there is no treatment, even though it is pallative treatment....My best friend has been fighting this for 2 years now.. She initally had surgery, the trouble with a glioblastoma is it has "fingers" that reach into parts of the brain that cannot be surgically removed........she had 6 weeks radiation, and 16 months of Temador......it kept it bay....and Temador is an ORAL chemo.....she is now have IV infusions of Avastin, Carboplatin and one other drug.....Duke University in Durham NC has a physician, Dr.(Henry, I think) Friedman, who is an authority on Glioblastomas.......He has been treating my friend after being treated at Wake Forest Baptist in Winston- Salem NC......I would encourage your brother to come back to the states and get treatment.....

    I am so very sorry your family is dealing with this........it's an ugly, horrible disease
    Peace be with you

    PLEASE bring him home!
    Where is he in CR? We have a home in Hermosa, near Jaco.
  • arkangel
    arkangel Member Posts: 8
    Brother Recently diagnosed with GBM- lives in Costa Rica
    Hi Karen,

    Just wanted to check in and see how your brother was doing? Did he get a second opinion on his GBM in the US? I think getting the correct diagnosis firest will determine the proper course of action.