recurrance: clinical trials questions

cre8iv1
cre8iv1 Member Posts: 5
edited March 2014 in Gynecological Cancers (other than ovarian and uterine) #1
Does anyone have any insight on whether to begin a clinical trial for uterine cancer spread to lung and upper lymph node(s) when the spread is still 2 cm or smaller; or, wait until it produces symptoms (pain)?

I realize whichever way it is done is palliative care and there is no cure. Chemo now or chemo later? Which would give more time and a better quality of life?

Have had two GYN-ONC opinions and a bunch of tests.

One wants to start chemo now. The other wants to wait and watch how fast it progresses with CT scans/tests hoping to give me several months before starting chemo. (Both are recommending more than one chemo at the same time.)

Any insight on the best clinical trial available for recurrance?

Otherwise in good health.

Thanks for your input.

Comments

  • tlva
    tlva Member Posts: 56
    #2
    Have you checked out any of the national cancer centers, Bethesda, Sloan Kettering, or M.D. Anderson Cancer Center in Houston? I'm not sure where you are but there might be a cancer center that networks with a national center and has the latest treatment options and information.

    Have you researched this site for options? If it were me, I would be inclined to do as much as possible now rather than later.

    I have a friend who had advanced ovarian cancer 19 years ago and they told her she only had a 4% chance of survival. She had a recurrence the next year and they told her she had a zero chance of survival. She went all over the country and tried everything anyone would throw at her.

    She is now a senior vice president of a national banking firm and in great health.

    There are miracles everday...you might be one of them waiting to prove them all wrong. God bless you and your family...you'll be in my prayers.
  • cre8iv1
    cre8iv1 Member Posts: 5
    #3
    Thank you, Ground.

    What sites do you recommend? The ones I've found are mainly OVCA and Cervical or earlier stages of UT.

    The way we understand about waiting was that if (40% chance) chemo works, it won't completely erradicate the tumors. It will shrink them at most 50% and that wlll last approx. 6 months before they start regrowing or continuing to other lymph nodes and / or other organs.

    As you mentioned, at this time anyway, once they *use the big guns,* on the recurrance, then the other chemos may not work so that is the reason to wait giving time to get things done while feeling relatively well.

    On the other hand, if the lung and lymph node contains cancer that was not gotten by radiation and has been dormant for a year, then doing it early may help; but if it is only a sixth month window and during that six months, there is the battle with side effects such as numbness in feet / hands, which may lessen the quality of life; then waiting seems the better choice.

    This is why I would like to talk to women who have been through a UT clinical trial to find out their side effects and whether they would do it over again knowing beforehand what they know afterwards. (Guess we've known too many people who lived less time than expected after going through chemo.)

    Praying for extra time with a good quality of life.
  • cre8iv1
    cre8iv1 Member Posts: 5
    #4
    tlva said:

    Have you checked out any of the national cancer centers, Bethesda, Sloan Kettering, or M.D. Anderson Cancer Center in Houston? I'm not sure where you are but there might be a cancer center that networks with a national center and has the latest treatment options and information.

    Have you researched this site for options? If it were me, I would be inclined to do as much as possible now rather than later.

    I have a friend who had advanced ovarian cancer 19 years ago and they told her she only had a 4% chance of survival. She had a recurrence the next year and they told her she had a zero chance of survival. She went all over the country and tried everything anyone would throw at her.

    She is now a senior vice president of a national banking firm and in great health.

    There are miracles everday...you might be one of them waiting to prove them all wrong. God bless you and your family...you'll be in my prayers.

    Thanks, Tiva.
    Both my docs are highly rated and one of the facilities where I've been examined is among the highest ranked in the nation.

    I pretty much know which CTrials are available. It isn't a matter of which clinical trial to do but rather when.

    I'd like to chat with ladies who've been through UT CA clinical trials to see how things went but facilities seem to not be able to connect me due to privacy issues. I'd like to know if clinical trial participants feel the one they did helped them and how is their quality of life afterwards?
    Did they start early or watch and wait?

    Thank you for the prayers. Greatly appreciated.
  • groundeffect
    groundeffect Member Posts: 639 Member
    #5
    You may want to go on boards at other sites for coverage while seeking someone who has gone through a uterine cancer clinical trial. I, too, would be inclined to say do whatever you're going to do sooner-no sense in waiting for further spread, especially if you're in good health. (I'm addressing this as if you're the one with the cancer, but realize it may be someone else.)

    I had both uterine and ovarian cancer when I had my hysterectomy, and had chemo because of the ovarian being dx at 1c. I know a number of women who are going through chemo now, and have gone through different trials/types of chemo. You may not be eligible for any further trial treatment once you've had a trial, but you probably know that already. One lady has had many types of treatments, some experimental. All are ovarian cancer survivors.

    Whatever the decision, I wish the best results possible.
  • Marjamaria
    Marjamaria Member Posts: 3
    #6
    groundeffect said:

    You may want to go on boards at other sites for coverage while seeking someone who has gone through a uterine cancer clinical trial. I, too, would be inclined to say do whatever you're going to do sooner-no sense in waiting for further spread, especially if you're in good health. (I'm addressing this as if you're the one with the cancer, but realize it may be someone else.)

    I had both uterine and ovarian cancer when I had my hysterectomy, and had chemo because of the ovarian being dx at 1c. I know a number of women who are going through chemo now, and have gone through different trials/types of chemo. You may not be eligible for any further trial treatment once you've had a trial, but you probably know that already. One lady has had many types of treatments, some experimental. All are ovarian cancer survivors.

    Whatever the decision, I wish the best results possible.

    I just noticed this message.I also have uterine cancer and mets to the lungs. I am now on Femara for 10 weeks but I am not sure it is helping.Did you go to a clinical study and what treatment did they give you? Marja

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