New here: Anyone have experience with Platinum Refractory Epithelial Ovarian IIIC cancer?

[cari559]

My mom was diagnosed with Epithelial Ovarian IIIC cancer in October 2017.

I assumed, naively that she would automatically go into remission and the hard part would be to deal with the cancer when it came back, because from all the research I've done, I've learned that it almost always comes back. Boy was I wrong! In the last month, we've learned that her cancer never went into remission and she is considered primary refractory. On top of all of this, her CA 125 never went below 270 and is gradually creeping up and is at 303. She has ascites (fluid) in her stomach, which when biopsied 2x's has come back negative for cancer, but doctor says it's just a matter of time before the cancer physically shows it'self. We've been told her care is only palliative and she can have anywhere from 6 months to 5 years to live (if she responds to next line of less aggressive chemo, topetecan). We are devastated. Since her CA 125 levels never responded we are terrified what the future may hold. We are going to have her tumor's genetics ran and are hoping something can come from that. If anyone has any insight in this situation please, I'd appreciate it. My mother is my best friend, my whole world and to not have her around when and if I were to marry and have children is horrifying. Neither my mom or myself have been able to keep it together emotionally for the last few days as we are paralyzed with fear.

[GwenHP]

One of the things you might consider doing is going for a second opinion. Doctors at different institutions will have different experiences with different drugs. Another option is to look for clinical trials which may be appropriate. There are free clinical trial matching services that can help find trials. One such service can be found on the SHARE website.

A piece of advice - don’t get hung up on statistics. As my father told me when I was first diagnosed, I was going to go into remission, be cured, or whatever independent of what a thousand cases shows. I’m living proof that we are all individuals and statistics doesn’t predict our outcomes. I was a stage 3C high grade serous.

Both my mother and I were diagnosed with this disease within a few years of each other. In her case she was platinum resistant and never got to a true remission and was in treatment for almost 8 years. But she did get to stable disease for more than a year and a half after trying numerous drugs combinations and protocols. In fact it was the 15th and 16th drug combination that dropped her CA125 from over 1000 down to 52 in one cycle and ultimately dropped it further into the high normal range for some period of time. That kind of result admittedly is highly unusual. For her the combo that worked best for the longest period of time and allowed her to have a good quality of life was Avastin/cytoxin. Avastin is an antiangiogenic drug and cytoxin is a drug that was used back in the 70’s before we had carboplatin and taxol.

Having a profile of your mother’s tumor may help her to identify the options that will most likely work for her.

I hope this helps

Gwen

[cari559 in reply to GwenHP]

Thank you Gwen for telling me about both yours and your mothers stories. It helps to read other people's experiences going through this.

My mother just went for 2nd opinion at the City of Hope and the doctor there said that her current oncologist is on the right track, which can be good, but he's making it sound like if her new regime doesn't work, that's it. Reading that that there are different drug combos that may work, not just the one he brought up, helps tremendously. She can't take Avastin at this time due to issues with her kidneys, but that could be an option in the future. Unfortunately, she was not a candidate for the clinical trials there either. I spoke to a nurse, who told me to keep checking clinical trials weekly because new things always come up. I will definitely utilize clinical trial service via SHARE.

It took some convincing yesterday due to the price, but my agreed to have the tumor profile be taken. We didn't realize that was still an option until yesterday when we found out that hospitals keep the tumors for 7 years. The doctor made it sound like it's not likely we will found out information we can use, but we don't want to leave anything on the table.

Thank you again for your response. It's given me hope and I hope that after I read it to my mother that it will give her hope too.

Best,

Carina

[Tesla_7US in reply to GwenHP]

Having the original tumor genetically tested IS important. While your mum may not have germline BRCA 1 or 2, she could have somatic BRCA in the tumor which opens the door to more treatment options. One of them might be Niraparib, the newest PARP inhibitor FDA approved in US. Please research this. All the best to you. I can imagine how devastating this is for you. Gentle hug to you both.❤

[cari559 in reply to Tesla_7US]

Thank you Tesla. My mom came back negative for BRCA 1 and 2, but I wasn't aware that she could still have somatic BRCA in the tumor. I'm the one who does all of the research and becomes consumed by knowing all that I can. I think it scares my mom to know so much, but I feel like if I know, I can help in someway or another. it's the way I feel like I have some control.

I've heard great things about PARP inhibitors, I'm hoping this testing gives us more insight.

Thank you for responding and providing insight.

[Tesla_7US in reply to cari559]

Cari, research helps us advocate for ourselves or loved ones. It helps us to better communicate with care givers. Knowledge is power. I quit my real time support group long ago. It's hard to sit in a meeting with one's brain FULL OF TAXOL and watching your hair fall out. I found that people on this site are far, far, more able to share information and support. I think since we can communicate from the comfort of our own homes at any hour, whenever it is convenient, is a HUGE BLESSING. I have gotten serious INSPIRATION from the brave women and men that contribute here. This is my GO-TO-SAFE-PLACE! So welcome aboard!!!!

[mimanda]

There are quite a few of us who are living happy lives despite all the things you fear (never going into remission, multiple recurrances, distant metastasis, and/or running out of treatment options). It sounds like y’all are doing a wonderful job keeping on top of the medical options! One trick is to work on understanding which things in life you have control over and which you don’t. Make lists, follow-up and keep working on the things you actually have control over and just let all the rest go and make some beautiful new memories together whenever you can! I’m the sick one but some of my best memories with my mom have come despite feeling terrible. Sounds like some counseling for both if you would help too. It has helped me so much! Thinking of you!

[cari559 in reply to mimanda]

Thank you mimanda. I started a support group, but it was a tad intense for me, so I'm going back for individual counseling. I've been searching local support groups for my mom and there isn't much in the area, so I'm trying to get her try online and phone support groups. I told her about this site and I think it will help her. I live 200 miles away, but go home often and for big appointments or to care for her on her worst days. She has my brothers and dad there when I'm not available. When I see her next week, I'm going to show her that there is a community of ovarian cancer patients that going through the same things she is, so that she doesn't feel so alone.

Thank you so much for your feedback.

[Tesla_7US in reply to mimanda]

mimanda, thank you for your keen insight. I am also a planner, it stops anxiety from taking over. I thrive on every day activity. Being with my family and loved ones is EVERYTHING. I actually don't feel too bad right now, even though I'm freshly pumped full of Doxil aka Caelyx. This might offend some people, but I'm enjoying great comfort by updating my estate plan and even specifying details for my funeral. I plan to live for many more years, until every single possibility for longevity is exhausted. Meanwhile, I am teaching my child how to manage money and plan financially. This brings me great comfort. So, carry on and thrive every single day!

[Jules_PPC]

They did genetic testing on my cancer cells, and they were 80% estrogen fed, and I was negative for both BRCA 1 and 2. So I am able to take Letrozole, I’m not sure where you live or if it’s even available there. But it seems to be keeping mine suppressed for now.

I was also platinum sensitive.

I’m not sure if any of that is any help to you. But HRT can wreak havoc on our bodies and we don’t even know until it’s too late.

Prayers for you and of course your Mother.

Jules 🦋