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Thread: Recurrence - 2nd surgery for immuno/virus trial - quality of life ?

  1. #1
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    Jul 2018
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    Recurrence - 2nd surgery for immuno/virus trial - quality of life ?

    My husband (4 was diagnosed in oct 17 got resectionof 3cm GBM in left temporal lobe and removed 95 percent. Tough recovery, saw quick re growth and he had bad headaches. Duke suggested a second surgery then to get more but once we got there they determined his speech was too bad to safely do another surgery. They started the radiation / chemo TMZ regimen and added avastin. He quickly rebounded and did great. His speech is affected, confrontational mostly if relaxed he can still tell a great fishing story and last winter he could downhill ski and has been fly fishing like crazy. In early July he felt numbness on right side and headaches were back. Immediately got na MRI and drs say regrowth is occurring.

    Trying to decide if we should do a clinical trial with 2nd surgery it's a phase immuno/virus trial. He is just not sure if he is willing to risk his quality of life. They upped his DEX to 6mg and the headaches are gone and the numbness is better. They say he may loose more speech and walk with a cane.

    Tried to get polio trial - they said his tumor was too close to the ventricle.
    He is not eligible for many trials due to previous use of Avastin.

    Has anyone had a second surgery and experienced minimal changes in cognitive, speech mobility? Were you able to maintain quality if life?

    If we don't do this trial we will try ABT414

  2. #2
    Super Moderator Top User
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    Dec 2011
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    Hello Maine, welcome. I'm sorry to hear of your husband's GBM.

    My sister died of this disease 2.5 years after diagnosis. She had a second surgery. She didn't bounce back from it as quckly as the first, but I would say that she didn't end up with any brain damage as a result. The forum has been quiet lately, but I can tell you that many other people here have had 2nd surgeries without further damage.

    That said, of course, it all comes down to your husband's situation and whether the neurosurgeon thinks his surgery can be done without causing further damage. And since he had a tough recovery from the last surgery, how likely do they think it is that he'll have a tough recovery this time?

    I checked the Clinical Trials website and the only ABT-414 clinical trial that matched your description is this one:
    https://clinicaltrials.gov/ct2/show/...ond=GBM&rank=4

    So, if that's the study they're talking about (sometimes doctors discuss studies with patients that aren't yet listed on clinicaltrials.gov), then it's got two things going for it:
    1. It's phase 2, not phase 1.
    2. It's open-label, meaning he won't be given a placebo.

    As for the vaccine trial, that's a hard call. The vaccines get great press but do they get great results? Most of the doctors I talked to during my sister's illness said "no". But that was five years ago.

    At this stage of the disease, it can be upsetting how doctors throw decisions to the patient and family-- after all, who's the expert? A good question to ask the doctors is what decision they would make if it were them.

    One other thing-- is trying Avastin again one of the choices? Should it be?

    (Disclaimer to all of the above: I am not a medical person.)

 

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