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Rare cancer: ovarian clear cell carcinoma

Gynecologic Cancers | Last Active: 17 hours ago | Replies (170)

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@birdergirl

I'm 74. oddly i don't really get fatigued. and i did not try lipoic acid since everything seems to be working well enough to control neuropathy and get my counts high enough for my next blood test. Will look it up, however.

my 6(8) hour infusions were cisplatin, taxol and herceptin - how just herceptin (keytruda).
yeah, but hair is just hair - would rather be living and bald. just wait until you lose your nose hairs (drip, drip) and the stuff in the nether region (feels very weird).

i am gargling with 1 t salt and 1 t baking powder 3 times a day, had to switch to a VERY soft chemo toothbrush (https://www.amazon.com/dp/B00N3Z9WDU?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1 this one from amazon from Tess - took a while to come but didn't start getting bleeding teeth until pretty far along and it is sporadic so occasionally i use my old soft bristle). also i had a friend who told me to switch a large spoonful of coconut oil around my mouth in the morning. She said it tasted terrible - i like the taste of the the one i got from amazon ( la tourangelle - https://www.amazon.com/dp/B0CSPJMCH7?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1&th=1).

the thing that was bothering me and keeping me from sleeping was the steroids that they put me on (5 the night before chemo, 1 in the a.m. and p.m. for 4 days after) - plus my face got really red even with the allegra they told me to take. I am sleeping a lot these days but never that bad plus i try to walk 1-2 miles/day.

oh, i guess i'm dmmr, not pmmr which may make a difference. actually i wanted to get Jemperli (which is for pMMR) but since they said this was working, it WOULD be off label.

maybe you really need a second opinion!! (I thought about finding a gravesite but too depressing! instead, i'm booking foreign travel until i can't do it anymore. my oncologist hates it but i'm scheduling everything around chemo treatments. I do notice that i don't have much bladder control for about 4-5 days after chemo. need to wear a diaper on flights > 4 hours (which means i need to get manually patted down at the airport but whatever).

good luck!

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Replies to "I'm 74. oddly i don't really get fatigued. and i did not try lipoic acid since..."

Are you on Herceptin/trastuzumab or Keytruda/pembrolizumab (or both)? These are different antibodies against different things.

Herceptin is against HER2, and Keytruda is against the immune inhibitor PD-1. Jemperli/dostarlimab is a different company's antibody against PD-1, and would be expected to have about the same effects as Keytruda. Jemperli is approved for dMMR endometrial cancers.

Thank you for sharing your journey and the helpful links. Love the foreign travel. Up yours, cancer! You go girl. Carpe Diem!
If you are dmmr have you seen the big news article from Sloan Kettering that was in the New England Journal of Medicine? It was on regular news outlets, too. The problem with the mismatch repair allowed the drug to target and strip cancer cells of protection and be DESTROYED. Here's the article . Dostarlimab is the drug they used.
The New England Journal of Medicine published a paper on April 27, 2025, that presents exciting new results from a clinical trial led by Memorial Sloan Kettering Cancer Center (MSK) gastrointestinal oncologists Andrea Cercek, MD, and Luis Diaz Jr., MD, that demonstrates how immunotherapy alone can help patients with MMRd cancers avoid surgery and preserve their quality of life. The results, presented simultaneously at the 2025 American Association of Cancer Research (AACR) Annual Meeting, showed that 80% of patients with several types of cancer treated with immunotherapy did not require surgery, radiation, or chemotherapy after six months of treatment with immunotherapy alone. Swim Across America awarded grants for the early-stage research and continues to award grants for the ongoing clinical trial.

Andrea Cercek, M.D., gastrointestinal oncologist and co-director of the Center for Young Onset Colorectal and Gastrointestinal Cancer at Memorial Sloan Kettering Cancer Center
Mismatch repair deficiency (MMRd) in cancer refers to a situation where tumor cells have defective mismatch repair (MMR) proteins, essential for correcting DNA errors during cell replication. This deficiency leads to the accumulation of mutations, including microsatellite instability (MSI), making tumors more prone to be recognized by the immune system. MMRd status is a significant factor in cancer treatment, particularly for immunotherapy, as it can predict response to immune checkpoint inhibitors.

The standard of care for many cancers that have this specific MMRd genetic mutation has been surgery, radiation, and chemotherapy. Still, the patients who responded positively to this clinical trial did not require surgery to remove an organ and did not experience chemotherapy or radiation, which improved their quality of life. This trial is the first time that immunotherapy has been shown to replace surgery for a variety of solid tumors.

“This study shows that immunotherapy can replace surgery, radiation and chemotherapy for mismatch repair-deficient solid tumors, which could help patients preserve their organs and avoid the harsh side effects of chemo and radiation,” said Andrea Cercek, M.D., gastrointestinal oncologist and co-director of the Center for Young Onset Colorectal and Gastrointestinal Cancer at Memorial Sloan Kettering Cancer Center. “Preserving a patient’s quality of life, while also successfully achieving positive results in eliminating their cancer, is the best possible outcome. They can return to their daily routines and maintain their independence.”

Luis Diaz, M.D., gastrointestinal oncologist and Head of the Division of Solid Tumor Oncology at Memorial Sloan Kettering Cancer Center
This phase 2 trial is an extension of a groundbreaking study, also funded in part by Swim Across America, in which all rectal cancer patients treated with the immunotherapy dostarlimab experienced a complete clinical response, meaning their tumors disappeared. This was the first time ever that a clinical trial had a 100% positive response rate.