› Forums › General Melanoma Community › Who is NED for 5 or more years?
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- This topic has 43 replies, 32 voices, and was last updated 6 months ago by gregor913.
Feeling a bit down after hearing of the loss of two of our rock star posters – Melanoma Mike and Julie of SoCal. Thought it might perk me (and anyone else) up to start a roll call of those of us who have been NED for 5 years or longer. If you are, please share!
- July 2, 2021 at 3:54 pm
jbronickiParticipantMy husband is 7+ years NED. Stage 4 with unknown primary
- July 3, 2021 at 1:18 pm
I am also stage 4 unknown primary and was wondering if you care to share the meds he took that worked and his experience with them.
- August 31, 2021 at 5:49 pm
i am about to start Yervoy/Opdivo combo since I have Mets to the spine and have just undergone back surgery and radiation to remove the tumor. I also had neck lymph node surgery twice to remove malignant nodes. Then did Pembro alone only to find out the spine had a tumor; so the pembro alone did not work.
Would love to hear others stories about successful treatment and how bad the side effects were.
Thanks for sharing and best of luck with your good news. Hope to be able to share this exciting news someday soon!
Diagnosed Stage IIIb in 2003. Stage IV in 2010. Living with melanoma for 18 years. NED for melanoma for 11 years.
- July 3, 2021 at 2:00 pm
- July 26, 2021 at 6:25 pm
I am stage 4 unknown primary and wonder if anyone on the forum would like to share their treatments which were successfull!
I have had 5-6 Keytruda infusions and then got a malignant tumor on my L5 lumbar spine. Had to have surgery and now radiation. Wondering what the next treatment will be. Anyone with clear scans please share with me what worked for you, if you don’t mind. You give me hope and that is so appreciated even at this point.
Congrats to all and so happy to hear so many good positive postings.
Rick from NCParticipantDx Stage 4 in Oct 1991, complete response to IL-2 at NIH in 1992, so coming up on 29 years NED.
- July 6, 2021 at 11:05 am
Dx’d Stage III unknown primary 1987. Surgery and lax cell therapy. Quiet for 9 years until 1996 then roared back Stage IV. Year of Interferon (yeah, yeah, I know all about it……………….NOW) surgeries again, all in all I think eight recurrences over the following nine MORE years, did I think 47 doses of IL2 2005, quiet for 3 more years, more surgerythat was 2008 then quiet for five more years and then onnnnnnnnnnnnnnnnnnnnnnnne more dance with the devil in 2013 and did Yervoy. That finally did it………………(well given my track record…………..maybe-maybe not !) All quiet for 8 years now.
- July 7, 2021 at 4:57 pm
Oh yeah, throw in two back surgeries and a stroke somewhere in there……….I digress.
When I was first diagnosed in 1987, the Onc said I was a time bomb and it was not a matter of if I would recur but when. I had no earthly idea melanoma would carpet bomb my hind end.
I have lost a lot of people very close to me from Melanoma over the years and I have partied thru the night with many as well.
Yep, I do have a dose of survivors guilt.
Durable remission, dunno.
All in all though I am quite Undead and the score now stands at Melanoma Zero—Charlie 44………….and I would still win if there is ever a medical show called “Scar Search” and I do think it sucks that there are NO frequent scanner miles.
That’s my story and I’m stickin’ to it.
Duh, seems I was embracing cocktail hour a bit toooooo much and my math skills were suffering…………that game total is Charlie 34-Melanoma 0.
- July 8, 2021 at 9:38 am
NOT 44. Jeeze I”m old but no that old !
AshleySParticipantI found out I had advanced stage Melanoma in July 2014. After I delivered my baby in December of that year, they found tumors all over my body. I have been NED since November 2015 and finished treatment in March 2017. My daughter will be nine this year and my son will be seven. There was a time when I didn’t know if I would see their third and first birthdays. I just come on here every once in a while to see how folks are doing and if there’s anyone who is pregnant with melanoma.
- July 8, 2021 at 4:25 pm
Keep on keeping on!
Mark_DCParticipantWell done Charlie, i thought it was IL2 that worked for you, but turns out it was ipi. Thanks for all your stories they kept me going through my treatments
- July 8, 2021 at 4:43 pm
ed williamsParticipantMark, you are not wrong about the IL-2 posts, that was my memory of events as well. So I took a look back, since I don’t trust my memory since after SRS cyberknife treatment. https://forum.melanoma.org/forums/topic/12-bags/
- July 8, 2021 at 7:26 pm
- July 12, 2021 at 6:57 am
Diagnosed July 13, 2016 with a
very very rare ulcerated nodular acral melanoma. First thought to have rare isolated cells in one lymph node (making me stage 3b AJCC7 at the time) then turned out there was apparently a staining error and re-analyzing the SLNB slides 3 times made me either stage 2b or 2c AJCC8.
5 years NED tomorrow. To be confirmed by PET/CT scan Sept. 2nd.
Unsepected and indescribable life-transforming events from beginning to this day.
My prayers are with all of us.
ErikaWithOptimismParticipantHi beautiful people! Reading this thread brings me Hope! **Thank you all, & Healing Light to you!** I had a melanoma (mole) removed in 2001 (plus 2 surgeries to remove/test lymph nodes & glands, which were clear!)
- July 14, 2021 at 7:04 pm
*19 years later*… BAM! My left leg went numb, & I had a focal seizure in that leg (frightening as heck, but I breathed my way through it.)
Scans showed 2 tumors in my brain; 1 in my lung; & 1 in my middle intestine. Recent MRIs & a colonoscopy failed to spot any of these tumors, dammit. What?! They apparently grew quickly.
So, the terrible year of 2020 got in a final punch with this diagnosis of metastatic melanoma, stage IV. And I started 2021 (celebrating my 52nd birthday) with brain surgery, targeted radiation, & 3 weeks in the hospital, with NO visitors because of covid. Arrgghhh, isn’t that rotten?!
HOWEVER! ~ I’m responding super well to immunotherapy! All the tumors (including 17 tiny new ones that had appeared in my brain) have shrunk ~ & some can no longer be detected. Opdivo continues!
7 months after the December ’20 diagnosis, my left leg numbness continues, & I’m still using my wheelchair & walker ~ but I’m also taking steps without them!
I’m remaining (mostly) deeply optimistic… I continue to hear my Inner Voice respond with calm, grounded positivity when my panic, anxiety, & morbid fears arise. I light a candle every morning & meditate on images of Healing Light!
Something that continues to nag me is my longing for a partner ~ a lover, supporter, cuddler, & co-conspirator in everything, profound & mundane. Some of you know, it’s very, very hard to go through this as a single person.
So, I’m here to gain & give fellowship & support! PLEASE point me in the direction of active threads & groups (including on other interweb sites). Thanks, & Best Blessings***
tedtell1ParticipantGood morning Erika;
- July 16, 2021 at 7:35 am
I read your note and it sounds like it has been tough but you have done a great job keeping on keepin on. This is a tough journey with a loving partner and supportive network, can’t imagine how it would be without that, so big props to you on navigating. I wanted to reach out and point you to a great FB (if you are on FB) group. It is only for stage IV melanoma people and caregivers and has a lot of people going through this journey whom are supportive, knowledgeable and caring.
I copy and pasted the link. It is a private group, so Ashley the admin may take a few days to respond when you request admittance.
Blessings and good vibes to you,
- August 13, 2021 at 1:40 am
Thank you for sharing your success stories. Gives me hope when I’m down or feel like giving up. I am now stage 4 , diagnosed with stage 3 in 2014. Just finished 4 combo doses of opdivo/yervoy. Moving on to the maintenance phase and hope it’s easier. I’ve had horrible side effects of the immunotherapy, so hearing that so many of you are NED gives me hope that I could be in that category. Im going to keep on keeping on.
sister of patientParticipantNot 5 years yet but in the 5th – so happy to report that my sister, Leisa, remains NED!!!
- August 31, 2021 at 2:17 am
The site’s changed so much and most of the profile info seems wiped out (maybe it’s there and I can’t find it) but I’ll just add that this is NED after a huge tumour load in bones and organs and hundreds of micro-mets in her brain. Immunotherapy (mostly nivo) and WBR did it all!!!
Please, never lose hope ..!!.. though I know that’s much easier said than done!!
Big hugs to all.
- August 31, 2021 at 5:57 pm
Diagnosed Stage 4 no existing primary and given 5 months to live back in December 2011. Needless to say, I’m still here. (4 recurrences, 4 oncologists, 3 surgeries, radiation, several immunotherapy clinical trials: graduated from vemurafinib to Ipi to finally pembrolizumab which worked but gave me AI hepatitis so no more of that.) NED just about 5 years now with scans to come next month. It’s been an incredible body, mind, soul life lesson.
Four years Ned today. Just got results of my scans and consider myself extremely lucky and fortunate. Good luck to everyone, and I don’t like this forums format. The old forum was much nicer. Shoutout to everyone (celeste, Ed, et al etc) to keep up the great work you have been doing for so long!
- September 14, 2021 at 8:44 pm
Oh, Bill!!! Congratulations!!! So glad to hear your excellent news and see you here!!! (And we all agree with you entirely!!!!) Enjoy! c
- September 14, 2021 at 9:24 pm
gregisblessedParticipantI didn’t get to respond but want to chime in about how encouraging you all are. I am at my 7-year NEDversary this month for IIB scalp melanoma.
- October 25, 2022 at 3:56 pm
I am having some symptoms that bought me a head MRI scheduled for tomorrow but trying to be positive that it’s not related to melanoma and I can continue my NED path.
ThinkingPositiveParticipantBest wishes on a great scan Greg!
- October 27, 2022 at 6:07 am
BRParticipantDepending on how you count, I have been NED for 17-18 years. WLE in April 2004. 1 year of Interferon.
- December 5, 2022 at 4:13 pm
Second primary in late 2005 (caught early).
Lots of scans and scares over the years. Sometimes it took two or three Dr. visits and tests to resolve something that looked suspicious. So far so good.
Best of luck to you.
TSchulzParticipantIt has been a long time since I checked in on this group and am happy to see so many positive stories. I was designated NED in early 2013 after TIL cell therapy at NIH in May of 2012. It has been an amazing 10 years, after a couple years of nervousness we decided to have a second child and seeing my two kiddos grow has been the biggest gift I could have ever asked for. I wish you all the very best 2023 possible.
- December 8, 2022 at 1:08 pm
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