Chemo trial waiting list????

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Leskay
Leskay Member Posts: 26
edited March 2014 in Head and Neck Cancer #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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  • stevenl
    stevenl Member Posts: 587
    #2
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    Waiting List?
    Leskay,

    Were there complications with chemo? If not I would run and get a second opinion. If your fiance has stage4 c he needs to be in treatment now. Seek out another doctors advice.

    Best,
    Steve
  • Leskay
    Leskay Member Posts: 26
    #3
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    stevenl said:

    Waiting List?
    Leskay,

    Were there complications with chemo? If not I would run and get a second opinion. If your fiance has stage4 c he needs to be in treatment now. Seek out another doctors advice.

    Best,
    Steve

    Chemo
    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% and two new tumors on the spine appeared.
    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??
  • adventurebob
    adventurebob Member Posts: 691
    #4
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    Leskay said:

    Chemo
    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% and two new tumors on the spine appeared.
    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??

    Tough choice
    Hi Leskay,
    I'm sorry that you are in the situation you are in. This must be a very difficult time in your lives. I'm not sure what the doctors situation is really or what to do with it but waiting and doing nothing does not seem healthy. Have you begun any alternative treatments yet? There are many that are non-harmful that can be done wherever you may find yourself. I suggest Gerson therapy as a starting place. It is time consuming but very healthy and really keeps the mind occupied. There are a few books detailing the treatment. Always a good place to start is with diet. If you haven't switched to organic or vegan now might be a good time to start. I highly recommend the book Anti-Cancer for good suggestions. Also, anything that calms the mind and activates the body is helpful. Yoga, Chi-Gong or just meditative walking are all good ways to tap into the body's natural healing systems.
    My prayers and thoughts are with you and your husband as you go through this.

    Bob
  • Leskay
    Leskay Member Posts: 26
    #5
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    adventurebob said:

    Tough choice
    Hi Leskay,
    I'm sorry that you are in the situation you are in. This must be a very difficult time in your lives. I'm not sure what the doctors situation is really or what to do with it but waiting and doing nothing does not seem healthy. Have you begun any alternative treatments yet? There are many that are non-harmful that can be done wherever you may find yourself. I suggest Gerson therapy as a starting place. It is time consuming but very healthy and really keeps the mind occupied. There are a few books detailing the treatment. Always a good place to start is with diet. If you haven't switched to organic or vegan now might be a good time to start. I highly recommend the book Anti-Cancer for good suggestions. Also, anything that calms the mind and activates the body is helpful. Yoga, Chi-Gong or just meditative walking are all good ways to tap into the body's natural healing systems.
    My prayers and thoughts are with you and your husband as you go through this.

    Bob

    We have started to change
    We have started to change our diet.... cutting out red meat and consuming fish and vegetables primarily. We also started to juice wheat grass and have even started something called implants. It sounds gross but its like a wheat grass enema. I just feel like nothing is working.
  • Fire34
    Fire34 Member Posts: 365
    #6
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    Leskay said:

    We have started to change
    We have started to change our diet.... cutting out red meat and consuming fish and vegetables primarily. We also started to juice wheat grass and have even started something called implants. It sounds gross but its like a wheat grass enema. I just feel like nothing is working.

    Clinical Trial
    Les
    I was in a clinical trial at U of Chicago. My wait time from the time of diagnosis to start of the trial was about 3 weeks.
    My cancer was also stage IVa but I had no mets an unknown primary with HPV+.
    Have they let you know what exactly the clinical trial will concsist of?
    I am like others here that you should seek another opinion from another cancer center.
    Best Wishes & Prayers on whichever decision you make
    Dave
  • CLRRN
    CLRRN Member Posts: 127
    #7
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    Clinical Trials
    Hey there....I'm sorry that you have to go through all this, it's not easy. With regard to the clinical trials... there are a couple of things I suggest you ask so you can decide if you need to move forward.

    1) Does the doctor know of a clinical trial that is opening soon at the hospital? If so when does he expect it to be open? OR

    2) If the doctor does not have a specific clinical trial in mind, is he looking for one or just waiting until he hears of something new?

    If they don't have a clinical trial that's going to start soon, be proactive and get another opinion. All clinical trials (with investigational drugs) are required to be posted under clinicaltrial.gov. You can search for a trial by location/type of disease. There is a Phase I clinical trial at Thomas Jefferson Memorial (Philly) The contact information, brief overview and inclusion/exclusion criteria is included with each listing.

    I hope that helps a little. Hang in there...

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