It's official - NED

Posted By
sister of patient
11/14/2017 12:56pm
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Replies: 19

Hey all - Couldn't wait to share this news, though my sister Leisa had her first clear scan in July, Oct. 30 scan is the same - she is totally clear and the onc has finally said those precious little letters - N.E.D.!!! Yayyy!!!

Have said it before but can't say it enough - thanks to so many on this board - you got us through it!!!!!

Best always,


Cindyco - (11/14/2017 - 1:46pm)

Congratulations! I just checked your history and your story is amazing.  Thank you for sharing. 

sister of patient - (11/14/2017 - 10:01pm)

Thank you Cindy! It is amazing - I think her story is an example of a "text book case" of how targeted and immunotherapies are supposed to work for BRAF+ people. I hope that one day all types of mel and their associated mutations respond the same way. Best wishes always for you and your mother!!!


Nashvillian - (11/14/2017 - 3:14pm)

What an Awesome story!!!


Stage 3b, ipdivo failure, taf/mek currently . Starting 10/13/17

sister of patient - (11/14/2017 - 10:04pm)

Thank you! :)  The treatment truly is "awesome and I wish you the best outcomes with yours!!


Scooby123 - (11/14/2017 - 4:54pm)

That is great news so pleased for your sister, let's pray we all say NED one day.


sister of patient - (11/14/2017 - 10:07pm)

Yes, that is what I hope for too - NED for all!! Thank you Scooby - I hope that it's on its way to you!! Best always!


jennunicorn - (11/14/2017 - 6:12pm)

This makes me SO HAPPY to hear!! Congrats to her and to YOU for being such an awesome sister to her!! Much love and many wishes for a forever NED status! :)

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

sister of patient - (11/14/2017 - 10:30pm)

Ahh ... thank you Jenn!!! Leisa is truly awesome, a real trooper!! And though we had the clear scan in July, having her close-mouthed oncologist now say it, means everything!!!

It's our hope that NED forever is right there waiting for you too!!! Special thoughts and a big hug going out to you :)


Casitas1 - (11/14/2017 - 6:17pm)

Right on! Great to hear.  Good job you two!

Best, Paul

sister of patient - (11/14/2017 - 10:41pm)

Thank you Paul. It's actually pretty humbling ... in alot of ways ... We hope next summer, she will be in your shoes - a year in. You are truly a warrior!! Best always!


cancersnewnormal - (11/15/2017 - 10:05am)

I so enjoy reading the happy news! Thanks for sharing! Your sister has been through a PILE! Hopefully the mela-beast will stay at bay and allow her to focus on damage repairs now! Congrats on NED!

sister of patient - (11/15/2017 - 2:10pm)

Yes! On with damage repair (and regular Nivo still 'til next Spring). Thank you Niki, you are another true "warrior"!! Best, always!


Bubbles - (11/15/2017 - 12:52pm)

Congrats!  Enjoy!!!! c

sister of patient - (11/15/2017 - 2:08pm)

Thanks Celeste!! We will!!

Sandi Conley - (11/15/2017 - 12:52pm)

So happy for you both!  Where can I read your sister's story?  I am new here today.  Was in remission on Tafinlar and Mekinist, but now cancer has returned.  I'm pretty much lost.  Trying to find a clinical trial that would be good for me.

sister of patient - (11/15/2017 - 2:07pm)

Hi Sandi - I'm so sorry you've had cause to seek out and join this forum but especially sorry to hear you've had a recurrence. You are in an excellent place though to arm yourself with facts and information and, hopefully, within a short time you'll feel a little less "lost" and more like you are on "solid ground." There is much to be hopeful for, great results from existing immunotherapies and many more new treatments in development and trial.

I see you have already posted - that's great!! There are so many knowledgeable people on this board - those who have gone before - who will answer your questions and help to inform your decisions. It will help them to help you if you can complete your profile (account information) and bring anyone reading it right up to date on where you are at with mel and treatment. 

My profile is actually my sister's, so you can read her history (or anyone else's, if you have an account and are logged in) by clicking on the user name beside the post title. If you've been on Taf/Mek and have responded, then there's no reason to think that immunotherapy may not also work for you.

I wish you the best of outcomes moving forward with treatment!!


Bubbles - (11/15/2017 - 2:08pm)

If you click on the link that is the posters name you can read their bio if they have made one.

Jahendry12 - (11/16/2017 - 6:56pm)

Awesome, Awesome, Awesome!!! Thanks for sharing!

sister of patient - (11/17/2017 - 12:43am)

:)   It is awesome  :)