Endometrial adenocarcinoma and peritoneal NEC

Posted by rikka @rikka, Apr 14 12:33am

Anyone with stage 4b endometrial adenocarcinoma with metastasis to the peritoneum (neuroendocrine adenocarcinoma) with lymphadenopathy?

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Profile picture for rikka @rikka

My gyn onco suggested to stop carboplatin/taxol chemo and keytruda.. and suggested to try carboplatin and etoposide combination.. but she said it was up to us to decide if we wanted that or to continue the current regimen (carbo/taxol + keytruda) and we chose to continue for now.. im really not sure what to do.. any thoughtd about doing carboplatin and etoposide instead of the original treatment regimen?

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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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Profile picture for nycmusic @nycmusic

@rikka could be that the tumor hasn’t seemed to shrink, but is it getting softer, a positive indicator ?

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@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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Profile picture for rikka @rikka

Also wondering how to get a 2nd opinion at MD anderson or Mayo clinic in Arizona. I tried searching but there is no in-network doctors for my insurance

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@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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Profile picture for rikka @rikka

@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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@rikka wishing you the best , Rikka !

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Profile picture for dj12 @dj12

@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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@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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Profile picture for juliea55 @juliea55

@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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@juliea55 thank you for this.

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Just 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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You’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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Profile picture for rikka @rikka

Just 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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@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.

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@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.

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@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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