Ever clinical trials for RARE cancers, or can't they get a large enough group?

lindaprocopio
lindaprocopio Member Posts: 1,980
edited March 2014 in Rare and Other Cancers #1
My oncologist said that he doubts that there are any clinical trials for treatment of my cancer (Uterine Papillary Serous Carcinoma) because it is too difficult to get a decent sampling assembled for a rare cancer. Makes me wonder if it's a matter of economics, as advances in treating rare cancers don't have the impact as advances in treating more common cancers ); less bang for the buck). But how will they ever learn how to treat these rare cancers if they don't ever conduct clinical trials? Have any of you had any luck being included in any kind of clinical trial for a rare cancer? How did you find out about it?

Comments

  • NETsurvivor
    NETsurvivor Member Posts: 16
    #2
    Suggestion
    Have you searched the Internet for Clinical trials? I just ran a search with Uterine Papillary Serous Carcinoma clinical trial in the search box. I found these two pages right away:
    http://clinicaltrials.gov/ct2/show/NCT00147680 and http://www.greenjournal.org/cgi/content/abstract/69/1/109
    I didn't look beyond that but wanted you to know that even though these studies are not current that your rare cancer is studied. Good luck with your search. I also have a rare cancer and have found support and information here on the Internet.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #3
    NETsurvivor said:

    Suggestion
    Have you searched the Internet for Clinical trials? I just ran a search with Uterine Papillary Serous Carcinoma clinical trial in the search box. I found these two pages right away:
    http://clinicaltrials.gov/ct2/show/NCT00147680 and http://www.greenjournal.org/cgi/content/abstract/69/1/109
    I didn't look beyond that but wanted you to know that even though these studies are not current that your rare cancer is studied. Good luck with your search. I also have a rare cancer and have found support and information here on the Internet.

    Thanks!
    I did find a trial in Texas and 1 in Brooklyn (I am in Pennsylvania), so maybe they ARE working on a cure for this and I am just feeling cynical. I had my first surgery just 2 weeks ago and am healing now, with radiation to start mid-November, and chemo to follow. So I'm still very new at all this. I've never been sick before. 55 years old and the worst thing I've ever had was poison ivy. Until now. Thanks again.
  • NETsurvivor
    NETsurvivor Member Posts: 16
    #4
    lindaprocopio said:

    Thanks!
    I did find a trial in Texas and 1 in Brooklyn (I am in Pennsylvania), so maybe they ARE working on a cure for this and I am just feeling cynical. I had my first surgery just 2 weeks ago and am healing now, with radiation to start mid-November, and chemo to follow. So I'm still very new at all this. I've never been sick before. 55 years old and the worst thing I've ever had was poison ivy. Until now. Thanks again.

    Positive Thoughts
    I know what you mean about being cynical about studies being done on your cancer. I too, know that when big fund raisers like Relay for Life and others are finished that none of that money goes to study my type of cancer either. I wish you the best in your treatment. Just remember there is always hope - even when the doctors are not very hopeful. I was not expected to live out the year when I was diagnosed and I am over a year and a half and still doing great. I have a bracelet that a friend gave me that says "Believe in Miracles". I surely do! Hope that your treatments bring you great healing.

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