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How is NED determined..?

How is NED determined..?

Posted By
Yuki
11/6/2019 3:43pm
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Replies: 3

Hi Warriors,

May I ask, how do doctors determine if one is NED? Based on how many clean scans?

My mom was diagnosed back in February with mucosal melanoma in her cervix. She had a hysterectomy and removed it. March scan was clean, however in her July scan it showed met to her liver, intestines, pelvic and her bones. She undergone 2 weeks of intensive radiotherapy for her liver met and full dosage of keytruda tri-weekly. Her scan in October was said to be “clean” however the tumor has not yet shrunk just pronounced “dead.” The doc currently suggests finishing 3 more rounds of keytruda and possibly stopping treatment after if her scans come out clean again…

My question is typically how do the doctor determine NED? And how long after a “clean” scan do the doctor suggest stopping immunotherapy?

I understand these are questions I should be asking our doctor however my mom is in Taiwan and Taiwan does not have a lot of knowledge regarding this type of cancer.
Post-surgery, our doctor recommended no adjuvant therapy and was shocked to see that it had met in only 4 months… for this reason I am reaching out to others to see what is recommended for you/your loved ones.

Really appreciate any feedback and support.

Thank you.

Yuki - (11/6/2019 - 3:55pm)

One other question I had was, if it’s in the blood stream, which our doctor suspected was the case after the surgery are there any tests that can be done to test that?
Thank you.

Hi Yuki,

I'm not an expert, but I've figure that once you can't find any disease anymore (via scans or blood tests or markers or whatever) you're NED. I don't think it takes multiple clear scans.

As for when to stop keytruda, Bubbles has a helpful post about this topic here: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=when....

Wishing you and your mother peace. Shalom!
Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

Yuki - (11/8/2019 - 1:50pm)

HI Julie,

Ah thank you! I've been looking and researching everywhere to get some clue and have not come across anything. Now having read Bubbles post and watching Dr. Weber's video, I realized I should I searched key words "discontinuing..." Thank you so much for the information!!!!!

BR/Yuki
[I'm not an expert, but I've figure that once you can't find any disease anymore (via scans or blood tests or markers or whatever) you're NED. I don't think it takes multiple clear scans.] In response to this, my mom has only done 3 months of treatment so far and the scans are "clear" with tumor pronunced dead. Because everything is in mandarin, I am not sure if that is the same as no evidence of disease? Is there blood work that can be done in addition to PET/CT to further confirm no evidence of disease?

BR/Yuki