Here is an update on my treatment for ovarian clear cell carcinoma, which I guess has now moved into Stage IV (started 1a). My taxol/carboplatin & Avastin chemotherapy treatment was discontinued after 3 infusions, as CT scan showed progression of tumors, and invasion into my liver. The doctors at UCSF have not much to offer as no targetable gene mutations were identified. They will do additional folate receptor testing, and if positive I could possibly get mirvetuximab soravtansine-gynx ADC. That's a long shot. I have also applied to a phase 1 immunotherapy clinical study that is targeting three diffetent antibodies. That one looks to be cutting edge, but there are no guarantees of effectiveness.Has anyone reading this message been given these types of treatments for clear cell?
Clear Cell Progression: Here is an... - SHARE Ovarian Can...
Clear Cell Progression
Sorry no experience with these treatments but wanted to say I'I'm thinking of you, really hope the study works out for you, and am sending hugs x
I don’t have clear cell but the trial sounds like the best bet. I think someone posted here recently about getting two immunotherapies for clear cell. I’d research who’s doing the most research on clear cell and contact then. Good luck!
Although I have lost ground during these past few months of chemo, I am thankful they stopped at 3. You are totally right about the trial being the best option.
I have been reading some encouraging things about the progress being made with immunotherapy in solid tumors.
I learned yesterday that they have saved a slot for me in a UCSF phase 1 clinical study to test a triplet of immunotherapy drugs. I will get a battery of tests before I can be formally accepted, and then hopefully start treatment week of May 28th. classic.clinicaltrials.gov/...
So sorry to hear this, I have no experience with these treatments either but it's great that there's a trial available and hopefully it'll be helpful for you, very best of luck going forward xx
I have NO experience with this drug. Sorry.
i haven’t but wanted to wish you great luck.
I dont have any personal experience to offer but wondered if you had asked on the Facebook group for clear cell which is called Ovarian Cancer OCCC Just in case someone had information on that group Best wishes for the Trial
Thank you! I was not aware of that FB group, but it must be a great resource. I'll check it out.
Susi, best wishes to you in the UCSF trial. I’m crossing my fingers it’ll work for you. What about looking at clear cell trials in other institutions, like say Dana Farber or MD Anderson or any clear cell trial that is found on clinicaltrials.gov? Don’t the UCSF doctors look up open OCCC trials in other institutions? Praying for you.
Good idea! I looked at the clinical trials dot gov site and there are a few OCCC specific studies at other centers. I don't know why UCSF would not look into or inform me of other options, but I need to keep my eyes open for next steps.
One of the listed OCCC studies is testing dostarlimab, that happens to be one of the three drugs in the study I joined.
I have read that dostarlimab was developed by GSK with ovarian / gyn cancers in mind, it was approved recently for endometrial cancer.
Yes, it’s great you took a look at the other occc trials. Hopefully, your tumor was tested for somatic mutations, PD-L1, HRD and all of the known biomarkers for response to immunotherapy and targeted drugs. Keep asking questions and getting opinions! It’s amazing how much work patients have to do in the medical system. PS. Dana Farber has a clear cell trial and they offer 2nd opinions online for patients’ cases. Prob very worth it to get a 2nd opinion on clear cell treatment from them. Dr. Panos Konstantinopoulos is a clear cell expert I’ve heard. Best of luck!🍀
Thank you for your suggestion to look into other cancer centers and studies. It looks like Dana Farber is doing some good work on rare ovarian cancers, and I'll keep them on my radar. I read about another interesting treatment that was just FDA approved, it is histotripsy of metastatic liver tumors. That is the worst thing I'm dealing with just now and would love to get some of that.
Keeping my fingers crossed 🤞 that you get accepted on to the trial and that it is successful for you, best wishes x
I dont have experience with that, Im sorry. I did want to reach out tho and respond since Im sure youre anxious to have someone similar to your story. I know its hard and I struggle some days too but dont give up! You are amazingly strong!
Hi, I have stage 3 c2 clear cell, after surgeries and debulking, 16 lymph nodes to date removed, I have no omentum, no female organs and appendix removed, colon had cancer and cancer was removed from it. I had IP, interperiteneal chemo therapy with IV chemo. I've had nothing else it worked really well. I would ask about IP chemo best wishes, liz, forgot to tell you, I've been cancer free 10 yrs.
Thank you for telling your story, it is so similar to mine - and with a happy outcome. Your experience gives me hope that it is still possible to make a comeback.
I am curious to know if your chemo regimen consisted of carboplatin and taxol, or something else. Also, how many infusions did you get?
The chemo clinic doctor said the next chemo drug he would try in my case is Doxil. I don't know why IP chemo was not offered, as I see now it is available at that hospital, and my tumors are confined to peritoneum.
I had a battery of pre- clinical trial testing last week, and I'm still waiting to hear whether I get accepted. Definitely looking for other options as well.
Hi Susie, I just saw this finding: onclive.com/view/nivolumab-....
Hope it’s useful & hope you’re coping well.
Hello Doggies,Thank you so much for sending that paper showing the exciting opdivo/yervoy study results for OCCC. The positive response avg at 33% (while still low for my liking), and the fact that they had some CRs, seems unprecedented.
It just happens that I had received your message while sitting in the waiting room about to start my first study infusion of a similar checkpoint inhibiting drug triplet (PD-1, TIGIT, and a novel PVRIG). I went in and mentioned the article you sent to the trial doctor. She smiled and said she had just come back from ASCO and had seen the presentation. That was so encouraging to me, I can see opdivo/yervoy being a future option for me.
That was on Tuesday, and so far I have had only mild side effects from the treatment. Fingers crossed.
Susie
I love your minimum side effects from the trial so far, Susie. Crossing fingers it gives you long NED. Glad to hear trial doc was aware of the yervoy/opdivo option. Will the trial doctor be your ongoing treatment doc /oncologist? Stay strong and best of luck w this treatment!
My regular GYN/Onc at UCSF participates in regular UCSF clinical team meetings to review my case, and they coordinate care. I will ask him about getting opdivo/yervoy in the future.
Maybe you can make a new post. Are you saying your gyn oncologist coordinates your care w trial docs at other institutions, where you’re doing a trial?
The docs are all at UCSF.Good idea, I went ahead and created a new post.
On to my next treatment plan...
Anyone else have this happen?
Anyone out there taking Letrozole for ovarian cancer?
Pat 🇺🇸
Bit silly, but I can't help worrying I have cancer. 
