PRAME positive

Posted by amywells @amywells, Sep 28 8:38am

Hi all fellow travelers on the cancer journey….I recently learned that I am ‘PRAME positive’ which makes me a candidate for a clinical trial of a new drug for ovarian cancer (I have stage 3c). I’ve read about it, but I’m wondering if anyone here has personal knowledge/experience of it.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

amywells | @amywells | 4 days ago

In reply to @dogee33 "I have a friend who went through a PRAME trial for melanoma… She is now considered..." + (show)

@dogee33 Thank you so much for that information!

dogee33 | @dogee33 | 4 days ago

In reply to @amywells "@dogee33 Thank you so much for that information!" + (show)

@amywells You’re welcome. Let us know what you decide to do. It is sooooooooo confusing ….seems like the bigger the possible rewards, the greater the risks. Hoping UF comes up with their universal cancer vaccine quickly!

val64 | @val64 | 4 days ago

In reply to @amywells "Val64, that is very helpful information. You obviously are very knowledgeable about this process. I hope..." + (show)

I inquired about this trial and learned that they're currently only recruiting patients with ovarian cancer. I have endometrial cancer. So I won't be able to give you the scoop on this one.

amywells | @amywells | 4 days ago

In reply to @val64 "I inquired about this trial and learned that they're currently only recruiting patients with ovarian cancer...." + (show)

@val64
Thanks for letting me know that. Where did you find that information?
Did you see the post this morning about one person’s experience with the drug?

val64 | @val64 | 4 days ago

In reply to @amywells "@val64 Thanks for letting me know that. Where did you find that information? Did you see..." + (show)

I asked my oncologist, who is running a bunch of trials at this hospital, although not that trial. She must have either known or asked the doctor who was running it.

PRAME is the target of multiple drugs/cellular therapies, some of them very different from each other. There are several in clinical trials now and have been others in the past. So we would need which trial @dogee33's friend was on.

amywells | @amywells | 4 days ago

In reply to @val64 "I asked my oncologist, who is running a bunch of trials at this hospital, although not..." + (show)

@val64 do you mind sharing which hospital you are going to?

val64 | @val64 | 3 days ago

In reply to @amywells "@val64 do you mind sharing which hospital you are going to?" + (show)

@amywells I sent you a private message.

Since this is your first recurrence, do they want to put you back on carbo/taxol?

amywells | @amywells | 2 days ago

In reply to @val64 "@amywells I sent you a private message. Since this is your first recurrence, do they want..." + (show)

@val64 I realize I didn’t answer your question…they said my next round of chemo will probably be carbo/doxil and Avastin. Will know more in a couple weeks after repeat scan and labs