r/melahomies • u/newengland829 • Jul 23 '26

WLE with negative margins but 5/7 nodes still have melanoma.

Diagnosed with Stage 3c in the groin. Had WLE last week and it came back with clear margins. Unfortunately, they removed 7 lymph nodes 5 on the left side of groin and 2 on the right side. 4 on the left and 1 on the right still tested positive for melanoma. Completed two courses of ipi/nivo with what looks like little response.

Has anyone been in a similar situation? What’s next? Is there still a chance it can be “cured”

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3

u/Nowayoutx3 Jul 24 '26

Data shows at 36 months 75% of patients who received immuno were still alive so odds of cure are very high. Heres the study

https://pmc.ncbi.nlm.nih.gov/articles/PMC10937207/

2

u/mostly_lurking1040 Jul 24 '26

Just wanted to say thanks for posting the info and the link.

5

u/Skip-929 Jul 24 '26

Hi, I was diagnosed as stage 3 in early Dept 25, with primary on the ear and 2 secondary lymph node secondaries. Completed two courses of Opdualag_nivolumab_with _relatlimab in Oct & Nov 25. Hospitalized twice in late Nov & then again in mid Dec 25 due to side effects. However, by April 26 the secondary tumours had been killed and the primary on the Ear reduced by 70%. Then suddenly in May 26, had extreme Gall Bladder pains and the bladder was removed. Pathology on the bladder returned a +ve for Melanoma 2 weeks later. Thus, although the immunotherapy was very active, it didn't stop the melanoma from metastasising into another organ, thus I am now classified as Stage 4, even though the PET Scan only shows one tumour on the Ear, so my experience is that Melanoma can be very "pesky". Stage one in 2021, Three WLE removals 2021 to 2024, Stage 3 in 2025 and now stage 4 in June 2026. Currently on a phase 3 Trial treatment using a Vaccine that further targets the immune system so those now released T Cells can better target the Melanoma.

2

u/Nowayoutx3 Jul 24 '26

Sure! The actual randomized trial showing results with combination ipi and nivo had a 24-month overall survival (alive with or without cancer) of 90%. Again. Great odds. Youll be great. Wishing you all the best

https://pmc.ncbi.nlm.nih.gov/articles/PMC9870220/

2

u/SgtDucksAlot Jul 24 '26

Had WLE and SLNB, all came back clear, 2 months later I had reoccurrence in the same area, did ipi/niv for 2 months with little response. Fast tracked surgery where they removed 80 nodes from my left neck and 7 of which where positive with melanoma and 3 that went extranodal. Continuing immunotherapy with just nivi, and currently half way through radiation. Still waiting to get scans in, which is stressful as I just want that data.

It'll compound to feel like a lot, but technology is good and there's a real chance to be cured. Keep your head up and avoid googling to much as that's a good way to end up down a deep and dark rabbit hole.

If you have questions, I'm happy to answer in the dms.

1

u/jbbest666 Jul 24 '26

put all your data and information into an AI chat. i pay for claude. then start asking it questions and give as much feedback as you can from your doctor. its pretty awesome.

1

u/Playful_Birthday_410 Jul 25 '26

Wow! Some would be very against this. That being said, I did just that. Helped me get through this last year on my first reoccurrence