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NED?!?

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NED?!?

Posted By
Tsvetochka
4/30/2020 6:33am
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Replies: 4

I am waiting for confirmation from my doctor, but if I'm reading these PET scan results right, they mean NED!!! So, my first question is for those who have reached that point: how did you celebrate? One year from Stage 4 diagnosis to NED?!?!

And then: what kind of follow up should I be expecting after this. We did about nine months of Keytruda, and now I think we're DONE. What happens after this?

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

Edwin - (4/30/2020 - 7:48am)

My December PET scan showed NED. I have continued to receive immunotherapy every 4 weeks. My last infusion of Opdivo will be in May, if my June PET scan shows NED.

Tsvetochka - (5/1/2020 - 1:09am)

I had already stopped immunotherapy. I'm curious to see what comes after this.

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

lkb - (5/2/2020 - 2:15am)

Hooray and Congratulations! Hope to join you someday in NEDness, but in the meantime, you'll have to celebrate yours for us all. Whatever you decide, I hope you enjoy it thoroughly!!!

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met January 2019 Pisces trial IL-12 + Pembro. .

 

johntmcdonnell - (5/11/2020 - 8:03pm)

Awesome news. Congrats! Your post struck me as I've had the same questions. Background.... I went stage 3 in Dec 2018 with a lymph node tumor and had surgery and monthly Opdivo infusions as adjuvant therapy Jan 2019 through May 2019. May 2019 PET scan showed 8 new tumors (obviously now stage 4) so stopped Opdivo and started Yervoy. Three Yervoy infusions and I developed auto-immune hepatitis so had to stop treatment however Aug 2019 PET showed complete resolution of all 8 tumors. We did a celebration dinner with friends and family as I figured we had bought at least a couple more years. I'm getting quarterly PET scans and latest was last week and I'm still NED. Doc says quarterly PET scans for at least a few years and I did ask him how people live between scans without worrying themselves to death. His response was basically glass half full vs. half empty - it's all about attitude. Will yours come back? Will mine? Don't know obviously and they certainly can but I've come to the conclusion that milestones don't mean much beyond the initial NED and living with a sword of Damocles over your head doesn't help. So celebrate today and tomorrow and the next day without worry. Follow Doc instructions of course but live life and be appreciative of today. Hope that helps a little