Thank you Heather. Have you or are you participating in any trials? I am looking at a trial with both Nivolumab (Opdivo) and Ipilimumab (Yervoy) with the addition of a new agent called OX40. The idea is that the OX 40 will ramp up the T-cells and the Opdivo and Yervoy will remove the receptors that are blocking the T-cells in the tumor from doing their job.

I hope to start the trial in 2 weeks. If anyone else in participating in a clinical trial, please share your experience.
Diane

Hi Diane,

My mother recently learned that she has ovarian carcinosarcoma. Yesterday, she learned that she has breast cancer as well. Your site has been ever so useful in helping me to get in touch with Dr. Birrer.

In a Times article yesterday we saw information about successes with immunotherapy. The clinical trial you said you would enroll in sounds encouraging. This is the type of trial I hope may help my mother. How do you find out about the latest trials and whether they are the right one for you?
We are visiting Dr. Kevin Holcomb at Cornell Weill NYC to learn about possible options in this field besides the suggested chemo.

Thank you,
Helena

Hello Helena,
Your mother was hit twice? That is not fair! Has your mother had genetic testing?

My experience with clinical trials is very frustrating. My experience with the major cancer centers is that they are aware of the clinical trials they are conducting but lack knowledge about all the clinical trials available. You will be referred to clinicaltrials.gov. You may or may not find a trial that admits GCS patients. But how do you know if the trial is a good one? We rely on our oncologists to direct us in the right direction.

We at the GCS Project are going to encourage women who have been or are in clinical trials to share their experiences. The more information we have, the better decisions we can make. I start a clinical trial in the next week or so. My intent is to document my trial experience and hopefully gain some information to share with other women.
Please let us know about your experience with Dr. Holcomb and his recommendations.

Best and sending lot of positive thoughts to you and your mother.

Dear Diane,

Thank you for your comments. Dr. Holcomb seemed more thorough to us. He mentioned the importance of testing the biopsy during the surgery. If it came back positive, he said he would have done a vaginal hysterectomy with a bag so that everything possible could be caught (without leakage from the cyst). That made sense to us.

We will look into the trials. We learned that there is one immunotherapy approved by the FDA, but we have to see what that means. The doctor will send part of the tumor to the lab to see if there are genetic mutations and what chemo/drug it may respond to.

I wish you the very best!

Helena

Hello Diane,

I am not looking at trial yet...just started on carbo/taxol regimen every 21 days x 6 cycles 1/5/18. Almost all trials for MMMT require prior therapy.

I just met with a MedOnc about the aforementioned trial today should I need it. Just wanted to get established as a new pt to expedite in case.

Hi Heather,

My mother should be starting the same type of regimen this week. I didn't realize that the trials require prior therapy. I wish you all the best.