Stage IV (4) Ovarian Carcinosarcoma - MMMT

grace289

Hi all, I'm brand new to this message board.

I'm currently 44 and I've been fighting ovarian cancer since August of 2023. I had surgery to re move a ~20cm tumor, then immediately started paclitaxil/carboplatin (+bevacizumab starting cycle two) every 3 weeks for a total of 6 rounds.

Continued the avastin for a few more months until my blood pressure was too dangerous.

Took Lynparza (olaparib) concurrently until we found an increased retroperitoneal lymph node in october of 2024. Biopsy took forever to get approved, finally had it in January of 2025.

Metabolic activity confirmed, so I continued on with paclitaxil/carboplatin until I had a reaction to mvasi in round 2 (8 total), so we switched to cisplatin for the remainder and completed treatment in August of 2025. Total of 14 rounds of paclitaxil/carbo-cisplatin.

Last month, routine CT scan showed a new 2cm tumor in/around my colon. PET scan then revealed metabolic activity in the colon tumor as well as recurrent increased activity in the lymph node, and another tumor (are "tumors" and "lesions" the same thing, medically-speaking?) near my spleen. My gyn-onc told me the cancer is now considered platinum-resistent since it returned so quickly after these treatments.

Spoke with the radiological oncologist this morning and we're setting up the plan to do radiation for those spots (in December) and then look at next steps. My gyn-onc has been amazing through this whole thing and is also suggesting alternative chemo (doxil) options in concert with the immunotherapy.

He's additionally found a couple of clinical trials in the area so I'll be checking with my insurance to see if they cover clinical trials.

I pushed my oncologist for a life expectancy and I'm grateful that he told me what to expect. He said a year, maybe two. I know he's telling me the scientific/medical expectation and is working to get me more time. At the same time, I'm going to fight until there's nothing left to fight. I'm not done with this life yet.

I just wanted to introduce myself and see if anyone else was struggling with this (very rare) type of cancer. 💖

ShaniaT

I came into this forum today looking for others who might have experience with ovarian carcinosarcoma, and I found your post sitting here without any replies. I’m really sorry you didn’t get a response sooner; this diagnosis is so rare that it feels like we’re all searching in the dark for each other.

I was first diagnosed in 2020 and had surgery, chemotherapy, and then maintenance therapy with Lynparza, which gave me over four years of remission. I truly believed that if the cancer ever came back, I’d be able to go through the same treatment regimen and return to my life the way I did before.

Last week I was in shock to learn that this new recurrence is more aggressive and difficult to treat. My team is recommending clinical trials, which I’m trying to wrap my head around. I know this isn’t a death sentence, but it has definitely made me feel unsteady and unsure of what comes next.

I came here hoping to read about other people’s experiences, but like you said, there isn’t much out there; maybe because so few of us have it or fewer talk about it publicly. I’m really sorry to read everything you’ve been through. It sounds like you haven’t had a moment to breathe, and I hope you’ve been able to get some clarity since you posted.

Please keep us updated on what you decide and how you’re doing. I’d really like to learn more about the options you’re exploring and what they might mean for those of us navigating this rare diagnosis.
Sending you steadiness as you move through this.

mylabs2

You should know that clinical trials are paid for by the drug company. Only standard of care is charged to your insurance. Tumors, lesions, implants are all the same thing.

mylabs2

I was diagnosed with stage 4 ovarian carcinosarcoma jn April of 2023. My debulking was suboptimal as they could only remove half of a 12 cm tumor. I had 20 rounds of chemo with carboplatin & paclitaxil until I became platinum resistant. Side effects include neuropathy for which I now take gabapentin. I lost my hair. I followed that with doxil/avastin. I experienced mouth sores, runny & sometimes bloody nose. My blood pressure went up & now I'm on amlodipine. I tried a clinical trial that did nothing but make me sick. Followed up with topotecan, which did nothing. I'm now on keytruda/avastin/cytoxan and waiting for results. My hair has grown back but I still have mouth sores and neuropathy. I have no appetite & maintaining my weight is a real problem. Throughout all this, my cancer has spread to my liver and my right kidney is blocked so that I had a nephrostomy (pee bag). Bottom line, this cancer is a tough one; of all the women diagnosed with ovarian cancer, only 1-4% have carcinosarcoma. I don't think there is much research going on that specifically targets this. Immunotherapy seems to make the most sense. There are clinical trials involving t-cells that seem very promising but the potential side effects are scary. These are phase one trials that are just looking for the highest dose that can be given before side effects become intolerable. I'm not ready to give up. Right now I'm looking to buy time while someone figures this out. Sorry for the length of this post. I would appreciate any suggestions or input from anyone who is dealing with this disease.