Chemo trial waiting list????

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Leskay
Leskay Member Posts: 26
edited March 2014 in Caregivers #1
What do you do when you are on a trial waiting list? How long do you sit and wait?
My 35yr old fiance has been diagnosed with stage IV parotid gland cancer (salvitory gland cancer) in Aug 2010. The Dr pulled us off conventional chemo after 2 rounds and put us on a trial waiting list.
What do we do if there are no trials available??? I have no answers.....
Can anyone help?

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  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
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    why?
    Why did the chemo stop, Leskay? Was your fiance unable to tolerate the treatment?

    Would like to know more about what the doctor says about this.
  • Leskay
    Leskay Member Posts: 26
    #3
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    Noellesmom said:

    why?
    Why did the chemo stop, Leskay? Was your fiance unable to tolerate the treatment?

    Would like to know more about what the doctor says about this.

    I am brand new on here so I
    I am brand new on here so I am not sure if you can see my profile info. But he was diagnosed in Aug 2010. He was a perfectly healthy 35yr old and he found a small bump behind his ear and went to the doctor immediately.... stage IV parotid gland cancer with mets to the spine (6 tumors) and to the liver (10.6cm). He had surgery to remove the primary tumor and a one time radiation blast to two of the spine tumors. He did two rounds of chemo (taxol and carbo-platin) three weeks apart. A re-scan revealed the liver tumor grew 15% in 45 days on the chemo versus 25% growth in 20 days before we started the chemo and two new tumors on the spine appeared. The dr deemed it a failure although it slowed it down.
    We are at the most famous cancer hospital in NYC and just went for a second opinion and it seems everyone says to wait for a trial. I am in a frenzy!!! wait??????? How can they ask us to wait?
    I feel paranoid... thinking maybe they dont want to put us on a trial because they feel we may be a failure rate for the trial if his cancer progresses. Am I crazy? What should we do??
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #4
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    Leskay said:

    I am brand new on here so I
    I am brand new on here so I am not sure if you can see my profile info. But he was diagnosed in Aug 2010. He was a perfectly healthy 35yr old and he found a small bump behind his ear and went to the doctor immediately.... stage IV parotid gland cancer with mets to the spine (6 tumors) and to the liver (10.6cm). He had surgery to remove the primary tumor and a one time radiation blast to two of the spine tumors. He did two rounds of chemo (taxol and carbo-platin) three weeks apart. A re-scan revealed the liver tumor grew 15% in 45 days on the chemo versus 25% growth in 20 days before we started the chemo and two new tumors on the spine appeared. The dr deemed it a failure although it slowed it down.
    We are at the most famous cancer hospital in NYC and just went for a second opinion and it seems everyone says to wait for a trial. I am in a frenzy!!! wait??????? How can they ask us to wait?
    I feel paranoid... thinking maybe they dont want to put us on a trial because they feel we may be a failure rate for the trial if his cancer progresses. Am I crazy? What should we do??

    Trials
    To the left of this page is a "Clinical Trials Finder". Have you looked there? What does it say? What kind of cancer have they told you to go into a trial for? What are they trying to treat?

    And, no, you are not crazy. We are here because we want the best care for our loved one.

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