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I'm still NED! Treatment Stopped!

I'm still NED! Treatment Stopped!

Posted By
Sharon93065
1/11/2020 11:18pm
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Replies: 6

In a nutshell, diagnosed 4/17, 3 treatments of Opdivo/Yervoy starting May 2016. Then stopped due to high liver numbers.

Jan 2017 to Jan 2019 every 2 weeks Opdivo infusions with Petscans every 3 months, bloodwork every 2 weeks. Newest Petscan
showed still no tumors. So Dr stopped Opdivo. He said that I am one of 3 of his patients that hit the 2 year mark NED. I also
met another patient at Kaiser with a different doctor that is also NED and treatments stopped. We were all Stage 4 Metastatic Melanoma.
PTL!
So now I might be around awhile I need to start dealing with cholesterol, and normal regular life stuff. Arthritis.
Before it was "why buy new shoes, I won't be here next year to wear them?"
I would like to thank other patients for all your support and advise. Bubbles, Ed Williams, the two Jenny's and others.
I still have to take 125 of thyroid meds daily and have fatigue. A little brain fatigue. But I've had 5 brain MRI's in the 3 years, and very high doses of
Prednisone for 4 months to bring my liver numbers in balance.e before starting the opdivo maintenance.
Sharon, Simi Valley, CA
Dr. Wang, Kaiser, Woodland Hills, CA

Sharon, Simi Valley

It started out looking like lunch cancer, tumors in chest, armpit, groin, lump on back etc.
There is hope!

Sharon, Simi Valley

Oh that is so wonderful— buy the shoes!

That is wonderful news, we will always celebrate NED around here! I agree with Judi, it is shoe shopping time. Congratulations, Jackie

Jackie <3

Congratulations, Sharon! That is wonderful news!

I understand the difficulty "looking forward" or dealing with mundane health "care" when dealing with melanoma!!! Here are a couple of posts you may find in accord with your sentiments ~

This one from September 2010, when I was post SRS to a brain met and s/p surgical removal of the right upper lobe of my lung which both took place in April - but with NO access to any other treatment as I did not find my phase 1 nivo trial until December of that year: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2010/09/looki...

This one is from 2016, 3 years after completing my trial and remaining NED for melanoma and deciding - yeah, well - I probably SHOULD check my lipids and such at a REGULAR doctor's visit: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=lipid

Good luck! Enjoy those shoes! celeste

That's great news Sharon! One year of bi-weekly Opdivo treatments with blood tests day before was very wearing, I'm impressed you went through 2 years, good for you sticking with it!

Hope you find some awesome shoes!

Stage 3C - Nov. 2018 9mm ulcerated nodular tumor primary on back discovered; Dec. 2018 WLE and SLNB (3 mets right and left axiila L 9mm, 2mm and 1mm); start Opdivo immunatherapy January 2019. 

That's great news Sharon! One year of bi-weekly Opdivo treatments with blood tests day before was very wearing, I'm impressed you went through 2 years, good for you sticking with it!

Hope you find some awesome shoes!

Stage 3C - Nov. 2018 9mm ulcerated nodular tumor primary on back discovered; Dec. 2018 WLE and SLNB (3 mets right and left axiila L 9mm, 2mm and 1mm); start Opdivo immunatherapy January 2019.