Low Grade Ovarian Cancer Stage 4

Posted by leannn @leannn, Feb 2, 2019

Hi, my name is Leann. I'm 51 and in 2014 my borderline ovarian cancer reoccured as low grade, 2015 we found it had metastasized to my lymphatic system - stage 4. I understand low grade is a rare sub type of ovarian cancer - slow growing but very resistant to treatments, so I was hoping to connect with others and hear what treatments you're on and the effectiveness. I'm running out of treatment options and want to be prepared. I was on letrzole until 2018 when the cancer progressed. I'm now on a combination treatment of fulvestrant and Kisqali that has stabilized the cancer for the past 6 months. Any other effective treatments for low grade ovarian cancer stage 4?

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

Colleen Young, Connect Director | @colleenyoung | Feb 2, 2019

Hi @leannn and welcome to Connect. As you read through the ovarian cancer discussions, you'll see that several members have mentioned that they are stage 4, but not all have mentioned the grade. @pat417 @laurieann789 and others talk about stage 4, high grade here:
> Ovarian Cancer Stage 1 borderline progressed to high grade Stage 4 https://connect.mayoclinic.org/discussion/ovarian-cancer-stage-1-borderline-progressed-to-high-grade-stage-4/

Are you able to continue treatment with fulvestrant and ribociclib (Kisqali)? I see that there is phase 1 study adding a new drug PDR001 to the combination of fulvestrant and ribociclib: https://clinicaltrials.gov/ct2/show/NCT03294694

What side effects have you experienced fulvestrant and ribociclib? I look forward to learning more about you.

leannn | @leannn | Feb 2, 2019

Hi @colleenyoung, I understand the borderline, low grade stage 4 is more rare but was hoping to connect to a few others with the diagnosis and treatment. I am able to continue the treatment of fulvestrant and kisqali (ribociclib), however my immune system is low which may be an issue if the trend continues next month. I often don't qualify for clinical trials because I have a rare heart defect. But I'll definatly look at the link you've provided. Thank you. As far as side effects, I've developed joint pain, fatigue, hair thinning, injection site pain. I've had 2 previous surgeries and a round of radiation that has caused lymphodema in my left leg and side which has been difficult to manage as well.