Sunday, 15 October 2017

Hello all-

My mom was diagnosed with glioblastoma in February. She underwent surgery than had standard temodar plus radiation. Her tumor was unmethylated and IDH1 negative. My parents live in Massachusetts and we enrolled her into the Survax trial:

https://clinicaltrials.gov/ct2/show/NCT02455557

I have attached her original tumor genetic analysis in jpeg format (sorry)



Unfortunately, 8 months after diagnosis she has had recurrence at original tumor site. She is undergoing surgery again for tumor debulking and symptom control next week.

She is functionally still active with her main symptom being a left visual field defect.

I would appreciate any thoughts/recs on what clinical trials and treatment options we should pursue.

Thanks in advance
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4 comments:

  1. Stephen W16 October 2017 at 12:22

    Clinical trials for recurrent high grade glioma recruiting in Massachussetts include:

    https://clinicaltrials.gov/ct2/show/NCT03152318 (the virus is administered during surgery in this trial)

    https://clinicaltrials.gov/ct2/show/NCT02026271 (this trial requires one dose of veledimex prior to surgery and a 3-month washout period for prior immunotherapies)


    https://clinicaltrials.gov/ct2/show/study/NCT02343406?show_locs=Y#locn (ABT-414 antibody drug conjugate targeted to EGFR) This trial is randomized with a chance of being randomized to receive chemotherapy alone.

    Many more clinical trials are recruiting outside that state, including the famous poliovirus trial at Duke (which requires a surgical procedure to deliver the virus into the tumor via convection enhance delivery, and measurable disease between 1 and 5.5 cm.
    https://clinicaltrials.gov/ct2/show/NCT02986178

    MDNA55, also delivered through convection enhanced delivery, recruiting in several states.
    https://clinicaltrials.gov/ct2/show/NCT02858895

    There is also an expanded access program for VAL-083, which could end up being more effective than either TMZ or CCNU for gliomas with unmethylated MGMT status. This protocol requires patients having "exhausted all standard treatments"
    https://clinicaltrials.gov/ct2/show/NCT03138629


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  2. mstix16 October 2017 at 15:05

    is your mother fixed on joining a clinical trial? Has your doctor determined that her tumor would not be responsive to immunotherapy? If it might work, she can take Nivolumab or Keytruda off-label under "compassionate care" outside of a trial. To immunotherapy, I would add Optune.

    My husband's tumor is also unmethylated and he is IDH negative. Terrible prognosis, right? Well he was diagnosed on 1/1/16. He went on an immunotherapy trial initially, but since December, he has been on Keytruda and Optune and is doing great, other than some aphasia.

    Clinical trials are great for advancing science, but the most effective treatment for patients with unmethylated tumors is Optune. I would not take a risk and do any treatment that did not include it.

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  3. Ak17 October 2017 at 06:53

    I appreciate the prompt responses and info. I will take this information back to my folks and hopefully this will improve our decision making.

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  4. GBM_cure19 October 2017 at 12:09

    Please call Les Goldman for Northwest Biotherapeutics in Bethesda Maryland. They have an immunotherapy vaccine DCvax-L also called DCvax-Brain for GBM. The survival stories from people with GBM are unheard of before and finishing the end of their Phase III trial to approval. It's your best chance in my opinion with GBM. I'll check back on here for a reply to see what happened.

    Sincerely,
    a friend

    Company Contact Info
    Investor Relations:
    Les Goldman (Company) (202) 841-7909 lgoldman@nwbio.com

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