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Well, I got confirmation yesterday that I do have recurrence. There are two 1 cm nodules on my left pelvic area. My doctor has suggested that I be in a Phase 1B clinical study. It would consist of carboplatin, gemzar and a new drug, Vorinostat. The study is being run by Dana Farber and Mass General in Boston. Is anyone else doing this? There are supposedly 50 people in this study. I will probably start sometime this month.
Oh Zircons, I'm so sorry that you had to join the recurrence gang. If there can be a plus side, I'm hopeful because your disease is relatively small and localized,
I looked up the study and it is brand-spanking-new. It looks as though you will be one of the earliest enrollees, like I am in my trial (I think I am #12). It looks like there is a phase II extension where you could get the trial drug for maintenance. I am sending my wishes, prayers and hopes for the best outcome for you.
I will be getting it for maintenance also. Supposedly I am going to take it forever, if I continue in the trials and it works.
I'm sorry you have to do this again but at least is sounds contained. I really hope that trial works for you - that would be wonderful. Good luck and let us know.
I am sorry to hear about your recurrance. I am on gemzar and carbo and am tolerating it gnerally well. You are in the best place, and I have great faith in Dana Farber. From your description, it seems they have caught it early. My best wishes and prayers to you to keep the faith and never give up.
Zircon,
I'm so sorry. I'm glad you're in the trial.
Blessings.
So sorry for your recurrence. Hang in there ;)
How do you know its a reccurence? Is your CA125 above 35? Did they take a biopsy? only because they found a 3cm cyst on my left remaining ovary and I have always had 2 small 1cm lesions on my liver, so how do you know? I dont mean to sound rude, but Im just curious!
My CA 125 was slowly going up. After surgery and chemo it never went to single digits. It was around 16. It went up to 41 so the doctor decided that I should have a CT scan and the scan showed two new nodules about 1.2 cm each. When diagnosed originally, my CA125 was only 128.
Lani, how did they find you 3 cm cyst? Are they doing anything about it.
Zircons:
If you must have a recurrence, early detection is best! Have they done a PET/CT scan to know with more certainty these areas are ovca? With being at Dana-Farber, it's one of the best. Keep us posted!!
Laurel
Actually, I am at Mass General. They are doing the clinical study together. They did do a CT scan. That's how they found it.
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