Endometrial adenocarcinoma and peritoneal NEC
Anyone with stage 4b endometrial adenocarcinoma with metastasis to the peritoneum (neuroendocrine adenocarcinoma) with lymphadenopathy?
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@rikka
Rikka, I was on Keytruda and after my 5th treatment my doctor decided to switch to another treatment. I always have a blood test before any treatment and before I started my new treatment my ca-125 dropped 300 points from using keytruda. But by then it was too late to stay on Keytruda!!!! The new treatment worked great for over a year then stopped working. We decided to give keytruda another try. But now my insurance company is saying no to keytruda because I stopped using it before (which they say means it didn't work before). We are going through forms and lots of paperwork to get back on Keytruda. So be careful about stopping a treatment too early. I hope to restart Keytruda next week but not sure yet. Crossing my fingers 🤞. Good luck.
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2 Reactions@nycmusic i couldnt tell i just feel like its the same size too and aince I lost a lot of weight my belly it looks bigger than it was but weight wise, feels the same
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1 Reaction@rikka Hi, Rikka. I would just call MD Anderson and tell them you would like an appointment. Do it right away. Their website says they accept a wide variety of insurance plans, including ones others don’t take like HMOs and Medicare Advantage. Moreover, they have many clinical trials which may be covered. My doctor is Dr Meyer, who is wonderful, but there are many other exceptional doctors and you might want to accept who can see you first. I got an appointment with Dr Meyer less than a week after my call. I did not need a referral since I am on Medicare and my supplemental insurance did not require it. You could most certainly get a referral if you need one, but you might try to get the ball rolling. Mayo is a quite a bit more restrictive in the insurance they take. I don’t know about places like MSK. I will let the others speak to that. As for your response to chemotherapy, don’t panic. I had seven cycles before surgery!
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4 Reactions@rikka wishing you the best , Rikka !
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1 Reaction@dj12 yes that was out thought too. We didnt just want to stop keytruda that fast. Thank you for the heads up
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1 Reaction@juliea55 thank you for this.
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2 ReactionsJust had my appointment at MD anderson and they recommended cisplatin and etoposide x 3 cycles... they will see if avastin can be added later but they want to try those 2 first. They are also waiting for pathology results to see if i qualify for their phase 1 trial. Please pray for me that i will respond to this new chemo combination.
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6 ReactionsYou’ve taken positive steps to give yourself the best possible outcome. We’re praying for you for sure! Please keep us updated and let us know how the new regimen is working.
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1 Reaction@rikka I'm glad to see that you've been seen at MD Anderson. Bravo to you for advocating for yourself. How are you feeling about these recommendations? When will you start the recommended treatment?
I will send you healing prayers.
@naturegirl5 i am anxious about the side effects but still hopeful since there are still options available. According to the oncologist at MDA, if this doesnt work there is another immunotherapy combination that we can try later. Atleast i still have something to look forward to treatment wise.
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2 Reactions