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Thread: Are there alternatives for the decadron? DCVax

  1. #1
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    Are there alternatives for the decadron? DCVax

    My dad will be finishing his 6th round of monthly Temodar at the end of Sept. We are going for compassionate use of the DCvacine after that. The only problem is that they have to taper off his steroids before they can remove his white blood cells for the procedure as well as during the vaccine injections. He has GBMIV dx in Jan 2011. surgery in Jan as well but was severely set back by the seizure that announced his tumor. He has not responded well to cutting back on the decadron. I am really worried that he won't be able to handle being off decadron. He now walks with a cane but still drags his foot and really doesn't use his right hand much at all.
    Are there alternatives for the decadron? Basically the vaccine works by boosting your immune system and steroids are immunosuppressant , complete opposites. The statistics for the DC vaccine seem incredible compared to anything else I've seen. His one good week a month is hard to watch and the thought of the vaccine with its very tiny if any side effects would be great.
    Any information would be helpful. I believe he is on 4mg a day and when they tried to bring him down to 2mg a day a couple of months ago, he couldn't speak and was only able to get around in a wheel chair. He slept all day, it was really scary, we thought it was regrowth.
    Thanks
    Mike

  2. #2
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    Quote Originally Posted by maustin View Post
    My dad will be finishing his 6th round of monthly Temodar at the end of Sept. We are going for compassionate use of the DCvacine after that. The only problem is that they have to taper off his steroids before they can remove his white blood cells for the procedure as well as during the vaccine injections. He has GBMIV dx in Jan 2011. surgery in Jan as well but was severely set back by the seizure that announced his tumor. He has not responded well to cutting back on the decadron. I am really worried that he won't be able to handle being off decadron. He now walks with a cane but still drags his foot and really doesn't use his right hand much at all.
    Are there alternatives for the decadron? Basically the vaccine works by boosting your immune system and steroids are immunosuppressant , complete opposites. The statistics for the DC vaccine seem incredible compared to anything else I've seen. His one good week a month is hard to watch and the thought of the vaccine with its very tiny if any side effects would be great.
    Any information would be helpful. I believe he is on 4mg a day and when they tried to bring him down to 2mg a day a couple of months ago, he couldn't speak and was only able to get around in a wheel chair. He slept all day, it was really scary, we thought it was regrowth.
    Thanks
    Mike
    Good luck with your Dad's taper.

    For the DCVax - how did you get the fresh tumor tissue for them to make the vaccine? Did he have a recent biopsy / resection?
    Nikos

    GBM IV, frontal lobe - March 2011

  3. #3
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    For the DCVax - how did you get the fresh tumor tissue for them to make the vaccine? Did he have a recent biopsy / resection?

    when my dad had his resection in Jan '11 we told the surgeon that we wanted to preserve the tumor for this type of procedure and as far as I know, they froze it. While its not a done deal I believe this was good enough for making the DCVax. My sister has been spearheading this effort.
    One note- For compassionate use we are paying $150,000 but at least we know he won't be getting the placebo.
    I just don't know if he can handle being off the steroids. I checked again with my mom last night and when they tried to ween him off before they reduced from 4mg to 3mg and it was too hard to deal with. Taking him down to 0mg might be impossible. This is why I am looking for an alternative to the decadron.

    thanks,
    Mike

  4. #4
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    A follow-up to your situation

    Quote Originally Posted by maustin View Post
    For the DCVax - how did you get the fresh tumor tissue for them to make the vaccine? Did he have a recent biopsy / resection?

    when my dad had his resection in Jan '11 we told the surgeon that we wanted to preserve the tumor for this type of procedure and as far as I know, they froze it. While its not a done deal I believe this was good enough for making the DCVax. My sister has been spearheading this effort.
    One note- For compassionate use we are paying $150,000 but at least we know he won't be getting the placebo.
    I just don't know if he can handle being off the steroids. I checked again with my mom last night and when they tried to ween him off before they reduced from 4mg to 3mg and it was too hard to deal with. Taking him down to 0mg might be impossible. This is why I am looking for an alternative to the decadron.

    thanks,
    Mike
    Did your father ever qualify for the compassionate use? Would you take a moment to tell how your situation played out? Thank you.

  5. #5
    Administrator Top User Didee's Avatar
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    Please note that this thread is from 3 years ago.
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

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