Find Support

355 days later

The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

355 days later

Posted By
JudiAU
7/21/2020 1:53am
View other posts by
Activity
Replies: 6

I found out 355 days ago that I had a new brain met, suspected to be Stage IV melanoma. This was the same appointment when my unrelated vicious brain tumor was finally defeated. After a year of treatment, my scans are clean. I am too hopelessly scared and defeated to think I am done. Nobody used NED as a term applied to my body. But in fact, right now, there is nothing NOTHING showing up on my scans.

I want to express my gratitude to everyone who has shared their stories, research, support, and love on this board. Your compassion is endless, generous, and so needed. Thank you. You make the journey bearable.

Judi

tedtell1 - (7/21/2020 - 7:56am)

Judi;
Great news. Sounds like NED to me, even if nobody used the phrase! Hope the roller coaster stops and everything stays good!!!!
Ted

Ted Tellman

Stage IV initial, NIVO February-June 2018 stopped because of colitis. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

Bubbles - (7/21/2020 - 11:47am)

Amen to what Ted said!!!! You have been through an incredibly harsh battle, Judi! Yet, here you are!!!! When asked (or told some version of same!) - "Are you going to die?" I answer, "Not today!" May luck and blessings be yours in the coming days and years. Enjoy!! celeste

jbronicki - (7/22/2020 - 9:55pm)

Ditto to Ted and Bubbles,

I can imagine it's hard to not be nervous about great news, but I'm so happy to hear this Judi. You've been really good to everyone on the board and really helped me too with my questions! I'm just so excited to hear the results from this scan. Your experience with two different types of brain tumors has been invaluable to this board (I'm guessing you could do without that distinction :) ), you too have helped so many people. I remember all of your responses and comments, THANK YOU. Many hugs Judi, can't wait to hear how you are doing in NED land.

Jackie <3

MelMel - (7/23/2020 - 1:53am)

To deal with and defeat one kind is incredible but to have two different, unrelated brain tumors and win is beyond fantastic! Congratulations on your NED and enjoy your new status. May it be ever lasting.
Melanie

Julie in SoCal - (7/23/2020 - 2:35pm)

NED, NED, NED! WOOOHOOOO

Happy Dancing with you in SoCal!!!!! Best news all week!

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

lkb - (7/24/2020 - 11:29pm)

Hooray. Judi! Rock it.

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. .