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Stage 4 Melanoma I'm now oglioprogressive in a single node and afraid of other spread. Anyone else experience this?

A MyMelanomaTeam Member asked a question 💭

I was diagnosed Fall 2024, with a deposit in my left lung, no primary know. Braf negative (wild). Treatment started with Ipilumab and Novilumab, but had severe reaction after first dose (cardiac myocarditis). And treatment needed to be stopped. I was able to rechallenge immunotherapy (Novilumab alone) in early 2025.

Things continued to shrink until Aug. 2025 where some new nodes popped up as SUV avid on PET. All were stable or shrinking except one node. Follow-up biopsy in that one node… read more

February 19
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A MyMelanomaTeam Member

I have a very similar situation. I was also diagnosed in the fall of 2024 and had two rounds of ipi/nivo before coming down with pancreatitis and hepatitis. I was off treatment for almost 9 months while recovering as I had a drug induced liver injury from one of the drugs they used to treat the hepatitis. My PET scan in September 2025 showed increased uptake on several nodules, so I was restarted on immunotherapy with only nivolumab. My PET in December showed decrease uptake and decreased size all around. My latest PET just last week showed one nodule increasing in size and increased uptake on others. They are supposed to discuss my case at their "tumor board" tomorrow, so waiting to hear what plan they come up with. I agree with you, the unknown is so difficult. Since my PET scan last week, I now wakeup with anxiety every morning around 3 AM.

March 23
A MyMelanomaTeam Member

Gerhard I also meant to thank you for courage in sharing your story. It was greatly helpful to read. Keep at the fight my dear friend.

March 23
A MyMelanomaTeam Member

Gerhard hopefully what you're experiencing is also oglioprogression and the next step is targeted radiation for that troublesome node. I've done some research where I've read it's typically how they proceed and the efficacy against the growing node is relatively very high.

I'm hoping, for both of us, that it's just a hiccup on the journey and once its cleared up, we continue on the immunotherapy and things go back to the path of shrinkage. I think it's a realistic outlook, if that's any help. I am sorry the hear about the damage you incurred from these drugs, but I will maintain they worth it.

I wish you the best of health Gerhard. Here's to positivity as an antidote to the unknown and hope as a catalyst. We don't know until we know and typically we will worry more than is due.

Thoughts and prayers, hope and positivity,

BSmith

March 23
MyMelanomaTeam

Are you experiencing oligoprogressive stage 4 melanoma and worried about further spread?

Your fear about progression is completely understandable, especially after seeing one node grow while others remained stable. The good news is that oligoprogression—where only one or a few sites progress while most disease remains Show Full Answer

Are you experiencing oligoprogressive stage 4 melanoma and worried about further spread?

Your fear about progression is completely understandable, especially after seeing one node grow while others remained stable. The good news is that oligoprogression—where only one or a few sites progress while most disease remains controlled—is actually a recognized pattern that can be managed.

Your treatment approach of continuing immunotherapy while targeting the single progressive node with SBRT is a standard strategy. Many people with stage 4 melanoma experience mixed responses where most disease responds well to treatment while isolated areas need additional attention. What to watch for:

Key symptoms that might indicate melanoma spreading include:
- Fatigue (most common recurrence symptom)
- New lymph node enlargement or hardness
- Shortness of breath or chest pain
- Changes in appetite or abdominal pain

However, up to 32% of recurrences occur without symptoms, which is why your upcoming PET scan and regular monitoring are so important.

The fact that you're continuing with Nivolumab and have TIL therapy as a backup option means you have multiple treatment paths available. Your medical team is clearly being proactive by addressing the single progressive node while maintaining your overall treatment plan. Moving forward:

Try to focus on what you can control—attending all follow-up appointments, reporting any new symptoms immediately, and staying on your current treatment regimen. The unknown is difficult, but you're being closely monitored and have experienced significant response in most of your disease.

A MyMelanomaTeam member in a similar situation might tell you that taking things one scan at a time, while staying connected with your care team, helps manage the anxiety of uncertainty.

February 19

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