Clear Cell Progression

[Susi3]

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?

[Bananasmoothie]

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

[delia2]

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!

[Susi3 in reply to delia2]

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/...

[delia2 in reply to Susi3]

Excellent news! Good luck!

[Tvam]

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

[9667]

I have NO experience with this drug. Sorry.

[tml2024]

i haven’t but wanted to wish you great luck.

[Mariej2021]

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

[Susi3 in reply to Mariej2021]

Thank you! I was not aware of that FB group, but it must be a great resource. I'll check it out.

[Doggies221]

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.

[Susi3 in reply to Doggies221]

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.

[Doggies221 in reply to Susi3]

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!🍀

[Susi3 in reply to Doggies221]

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.

nbclosangeles.com/news/loca...

[bananayo]

Keeping my fingers crossed 🤞 that you get accepted on to the trial and that it is successful for you, best wishes x

[Nlehrer]

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!

[Lizchips]

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.

[Susi3 in reply to Lizchips]

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.