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Real members of MyEndometrialCancerTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyEndometrialCancerTeam Member asked a question 💭
New Jersey, NJ

After 6 rounds of carboplatin and taxol followed by 15 doses of external beam radiation, I have a new metastasis (in Pelvis, so nothing outside pelvis yet) and my diagnosis has been upped to advanced endometrial cancer.

I have also been on keytruda (immunotherapy) since the first round of chemo.

I will be starting the Lenvima in the next week or two. I will continue with keytruda every three weeks. The Lenvima will be daily oral medication.

Kind of scared of the side-effects and… read more

July 30, 2025 (edited)
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Answer Summary

Members responded to a question about Lenvima with honest accounts of their experiences, noting that while side effects can be serious, many... Read more

Members responded to a question about Lenvima with honest accounts of their experiences, noting that while side effects can be serious, many have seen promising results including no evidence of active disease on PET scans. Several members shared that mouth sores, diarrhea, weight loss, high blood pressure, fatigue, and in some cases acute renal failure or heart irregularities were challenges they faced, with doses often being reduced to help manage symptoms. A recurring theme was the importance of communicating side effects to your oncologist right away, monitoring weight and nutrition closely, and leaning on loved ones and your care team for support.

A MyEndometrialCancerTeam Member

I also have no interest in food sometimes, but also flaring oral mucositis, diarrhea & bloating affecting my ability to eat even when I want to. As I mentioned, keep an eye on your weight loss to assure you are getting adequate nutrition. I supplement with protein shakes & bone broth. When my friends tell me that I look great, my response is “ You don’t want my diet plan.”

August 25, 2025
A MyEndometrialCancerTeam Member

One thing to watch is how much less you are eating. I finally realized (after losing 30 lbs), that my fatigue was due to not being able to take in enough calories to maintain my body functions. I also have a history of weight loss surgery which complicates my case, but it’s something to keep an eye on. Meet with a nutritionist if necessary for a plan to get enough calories & nutrients when eating is hard.

August 22, 2025
A MyEndometrialCancerTeam Member

I have been on Lenvima for 1 week and had no real side effects. Felt very good all week. Fatigue is still bad, but could be from the keytruda.

But I did notice that I ate less last week than I normally do.

August 22, 2025
A MyEndometrialCancerTeam Member

the combination of Keytruda and Lenvima is specifically indicated for tumors that are microsatellite stable (MSS) or mismatch repair proficient . I’m surprised they just gave you Keytruda if your tumor is MSS or pMMR. ( like my tumor) . I would have to do both. Maybe it was for insurance authorization? I did Zirabev from my first chemo and continued this infusion for 12 months after chemo. My oncologist said it was easier to get authorization if it was started the same time as the chemo regimen. Best of care to you .

July 31, 2025
A MyEndometrialCancerTeam Member

I know I have stage lVA. It can back in my pelvic bone after 7 years. The side effects I experienced were gradual from being not very hungry to everything I ate felt like someone was taking a razor blade to the inside of my mouth. So I stopped eating. Even drinking water hurt. Because it was so gradual I didn't notice just how much I wasn't eating. My side effects were mostly in my mouth and taste.

August 21, 2025

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