Has anyone else been diagnosed with metastatic melanoma?

Yes, I was diagnosed a little over a year ago.

Yes, almost 2 years ago for me

Yes I had surgery in July and I'm on my 3rd infusion Opdivo. They believe they got all the cancer it was a little deeper and wider than they thought but it had not reached any organs or in my lymph nodes! I was very fortunate. I opted to take infusions just in case 1 cell got by them...I did not want to mess around with this or have it ever come back. My cancer team at Northside was awesome. They are continuing to care for me.

Many people in this community share similar experiences with metastatic melanoma, and connecting with others who understand this journey can provide valuable support and insights. This is a caring space where members often share their experiences, treatment approaches, and encouragement with one another.

“Marnie — that was me in 2021. Back then, they weren’t offering treatment if the PET scan came back clear — and mine did. Boom — three years to the day, I notice a swollen lymph node in my neck. Turns out it was stage 4 metastatic melanoma. I’ve now been through two rounds of Nivo and Yervoy, a Modified Radical Neck Dissection, and thankfully healing well. I’m probably in for another year of Opdivo — who knows if there are still micro cells out there, but I’m not taking the chance. One thing I’ve learned: the clear scan doesn’t always mean the fight is over. But I’m still standing, still pushing forward, and trusting that this chapter will end in full remission.

Stage 4 in bilateral lungs and Opdualag put me in remission 🙏🍀

Stage 4 as of 2018 still here in May of this year doctor said that it would not kill me

I was diagnosed 1 year ago with Stage 3 metastatic melanoma. It started on left upper arm. It spread to a lymph node under my armpit. I have been taking Opdivo immunotherapy treatments now for 9 months.

Nancy how’s the opdivo been? I start on monday.

I had 11 mos of Opdivo and a horrible skin rash and itching. I couldn’t do the 12 mos. The cancer metastasized to the groin LN 8 mos later

My Dr said I had the strangest pigment ptosis he had ever seen

Yes. I was diagnosed 5 years ago to lymph nodes. Primary mole ( melanoma removed) Two resections of lymph nodes. First Optivo and Yervoy. Then Clear scan. Good response. 9 months later Returned to brain, lungs, lymph nodes. Placed back on Optivo and Yervoy. Poor response. + braf gene. Gamma knife to lesions in brain. Placed on mektovi and braftovi orally. Continued with now slow growth of tumors in groin lymph nodes. Awaiting TIL.

William, hope the Opdivo is going well for you. I had some itching and skin irritation early on but it has been a little over a year now and it does subside. These drugs do appear to be effective. Hang in there and stay positive

2023 removed melanoma on back. Postive on one lymoh node. Was clear but played defense. Did 6 months of chemo but side effects (chills & shaking than sweats) too much. June 2025 PET showed lesion in hip. Old oncologist thought to just wait for PET scan in two months. Bad choice, it spread in many places. MSK has me on Opdualag. Severe pain and ache from tumors is very tough. Hope to keep battling.

Started with a mole on my back, melanoma, surgery and successful removal. All clear margins but it's now MM in my left lung. On opdualag twice and hoping for treatment #3 today if my liver numbers cooperate. Hang in there. Prayers are with you.

Yes, June 2025

Yes. I was diagnosed with metastatic melanoma in 2020. Surgical removal, spread in many lymph nodes. Initially responded to Optivo and Yervoy. But due to Braf gene came back and spread to lung brain. S/p gamma knife to brain neoplasms and now responding to Mektovi and Braftovi. Was told I had a 50% chance to survive 5 years. Now they are considering TIL. Be compliant every year I have survived MD ANDERSON comes up with new treatments. Here’s hoping for 10 more years.

Yes I have metastatic modular melanoma for the second time now in an inner growing lymph node Dr decided to leave the cancerous lymph node in and I Had one of four scheduled opdivo yurvoy treatments. It went horrible with severe diarrhea I’ve lost 27 lbs in less than a month and I’m absolutely miserable. They say there is a drug out there that will help but it’s hard to get insurance to approve only after going through the drugs that don’t work. Finally had a two hour I V of ramadeck Hoping this helps I no longer care what A I says I should do I will never take another dose of yurvoy opdivo I’m convinced it will Kill Me.

Try Opdualag. It helped me, Opdivo didn’t and Yervoy with Keytruda didn’t help

Just had my third Opdualag treatment. This time, so far, isn't so harsh. Had my first PET scan since diagnosis yesterday. Hoping and praying for positive results. 🙏 👍 🤗

Originally I had Stage 1 and had excision with a 1 inch margin and a Sentinel lymph node biopsy, this was negative. The doc said there was roughly a 2.5% chance it could have gone elsewhere. In 2025 I started feeling tired all the time and losing weight, but prior to this I had gotten a flu vaccine so I figured I just had a bad reaction to that. I then had swollen lymph nodes in my armpits, and what looked like a couple blackheads appeared on my hairline. Suddenly a couple brown-purplish nodules appeared to grow out of my skin on my upper leg next to my groin. I had them biopsy and I as received the results I cut my dermatologist off and said, "stage 4 metastatic melanoma" and he was surprised and you knew, and I let him know that I had my strong suspicions. They treated me with Yervoy and OPDivo starting in mid April of 2025. From mid February to June I went from 195 pounds down to 150 pounds and slept all the time. My appetite was gone. My cancer had spread to my brain, liver, spleen, stomach, digestive tract, lymph nodes, spine, femur, kidneys, and adrenal glands. Yervoy takes about 6 weeks to kick in and when it did the hit on the tumors in my brain caused me to have a grand mal seizure and I woke up 3-4 days later in the hospital and was having stroke like symptoms with my speech and was having occasional A-FIB. Soon I was having issues with my arm just flopping around and my legs would just repeatedly stop working, as if the signals to them just stopped, this caused quite a few falls. I figured I was a goner. A week later I had shaved my head and facial hair as part of my normal hairstyle routine, and a few days later someone said "nice mustache" with a laugh and told me to look in the mirror and all my hair had turned white all at the same time, body wide vitiglio. I am now essentially permanently an albino, and now my immunotherapy is causing my immune system to lightly attack my eyes slightly depigmenting my retinas, but I am managing this with steroids. While this attack of melancytes (pigment cells) has very visible side effects, melanoma is just mutated melanocytes, so this is actually a positive sign. My personal belief is if I had not had these treatments, I would have been dead before the end of August. Within a few months of treatment, well over the majority of my cancer was gone and I was feeling great other than general fatigue. I am about 10 months into treatment and most of my melanoma is gone or has turned non-active. The only areas where I have concerning lesions is in my adrenal glands and brain. My adrenal tumors are about a third of their original size. My innumerable brain tumors which are the size of a sand, have not grown, and many have vanished or are shrinking. OPDivo and Yervoy do seem to also allow the immune system to clear melanoma brain tumors. While stage 4 melanoma is not curable yet, it is manageable, and life for me is almost back to normal. I just wish I could get coverage that would allow me to get in some of the clinical trials that MD Anderson often gets.

Glad to hear that things are better. Hoping to continue to manage my metastatic melanoma in my lungs only with Opdualag. Treatment #4 is hopefully this next week. Another one a month later and then a CT to see where we are. Nothing glowed on the PET scans, first or most recent.

Great David. I’m 🙏 for you. Aren’t clinical trials free?

Tim I forgot, I also had melanoma in my lungs as well, that is gone now. I will have to look into OPDualog. Jill clinical trials typically only cover the drugs, and not the imaging or labs, at least at MD Anderson.

Wow. You don’t have insurance that cover you? Maybe you should come other cancer centers. Where do u live?