I know some women on this site know they have this rare type of ovarian cancer and I am wondering if you would mind telling me what treatments you've been on or are currently on. I am on a clinical trial (PXD101) and am not seeing the results I was hoping to. My disease is stable and has remained stable throughout this trial, but it I feel like I am giving up so much to participate and I'm starting to wonder if it's worth it. Of course, my doctor's are certainly not offering up any other options at this point, as they are the ones running the trial and they want people to complete it. I know I'm not the only woman whose in it who wants to quit - several of us are in the same boat and don't know what to do next. There is no standard protocol of treatment for recurrence of MPSC, so my hope is to find out what others are doing and if they are having any sucess. I'm seriously contemplating making a trip to Johns Hopkins for a medical second opinion. It's pretty sad when you are being cared for at one of the top 5 cancer research hospitals in the WORLD, yet you feel as though your not getting the best care you should be.
Thanks for anything you can pass along...
I did a search in the medical journals and could not find anything on MPSC. I wish I could have found you a great new article on it. As far as the second opinion, it is your choice, some place else might have another suggestion, you never know. Thinking of you.
As you know Leslee has MPSC also and her trial did not work, Mayo told her that in her case they might have to try many drugs before they find the right one. You never mention if you take any of the suppliments , not sure if they really work or not , but at least we know we are trying all the avenues open. They said if they could get her into remission for 1 year they would do the carbo/platinum again and perhaps the secondary surgery to remove the lesions if the Doxil does not destroy them. I think that with your kidney problems that might just be the thing that pulls you down, Leslee had the Asthma problem and they worked on it and have it controlled. Take care kiddo, I think of you every day and am hoping something starts to work for you very soon.
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