What's your experience with Opdualag for metastatic melanoma?

Opdualag is a newer combination immunotherapy option that many in this community are navigating together. Sharing experiences with treatment journeys—including side effects and responses—can be incredibly valuable for others facing similar decisions. Hopefully, some community members who have experience with this treatment will share their insights to help provide the support and information you're looking for.

Diagnosis of metastatic melanoma in mid October. Hopefully taking treatment #3 tomorrow if my liver enzymes are tolerable. Two weeks ago they were not where my oncologist wanted them. My current situation began with swelling feet and hands and no explanation. Testing started and a chest CT showed nodules in my left lung. PET scan didn't show but biopsy revealed MM. Oncologist recommended opdualag. First treatment back in early November was difficult if I'm honest. The fatigue was something as well some pain. Second treatment was hard but a bit more tolerable. Still no testing or update on treatment process. Hopefully after treatment #3. What I read says opdualag affects some worse than others. Mine is mostly fatigue and some pain.

Thank you, David. I will have my 2nd treatment this Wednesday the 13th. My side effects were minimal with the first infusion. I developed a metallic taste in my mouth and having occasional double vision. And for a few days I had a bit of nausea. Hopefully the second infusion will be tolerated pretty well. Stay in touch. I be interested in your Opdualag Journey.

I have had no problems with Opdualag except my gums and teeth are getting bad. The medicine took away my 20 lung nodules but a new one was seen. Very small and will see how it goes with mid feb PET scan

That sounds very encouraging, Jill! How long have you been receiving opdualag treatment? How far into the treatment did you start to have trouble with your gums?

Currently still waiting for my liver enzymes to calm down so I can get opdualag treatment #3. Hopefully after that we can get a full evaluation of the effectiveness. That part is the hardest. The fatigue is still a real thing for me. Currently on FMLA from my high school teaching job. Waiting, praying and resting. My functional medicine doc said sleep is the time when our body does it's best healing. Always in hope and faith. ❤️🙏👍🤞🖖

I hope you will be able to resume your treatments soon. I have trouble with sleeping. Do you have any pointers for sleep? I usually wake up around 3 hours into my sleep and then after that I feel like it's just a light sleep.

Donna P. I had trouble with my gums/teeth over a year ago before Opdualag and a tooth fell out. I’ve been on 3 other immunotherapy drugs. All of them can cause mouth problems my dentist said, but it’s worse now. I have had 11 treatments with no side effects 🙏🍀. I take Trazodone for sleep.

All immunotherapy drugs can cause liver enzymes to be elevated mine is sometimes. I stopped having any alcohol.

Jill, No alcohol for me though I wasn't much a drinker anyway. Prednisone made a big difference but my oncologist wants my liver enzymes down with a lower dose of steroids so we wait. He said the treatment lasts as long as 12 weeks so it's still working despite not getting the most recent one. Hopefully this next Tuesday. 🙏👍🤞

I'm trying hard to navigate this major life shift of metastatic melanoma. It has totally changed my life in many ways. I'm sure for many others it's the same. Just want to say that I'm available to chat almost any time. You can find me on FB & IG, @davidel57. Feel free to message. I'm no expert, just a fellow traveler. 🚶🧟

David, where are you receiving your treatment? My oncologist is at Northwestern Chicago at their Melanoma Clinic. Just curious where my fellow travelers are from.

David E- I still had my infusion when my LFT were elevated.

Donna P. We live in Duncan, OK and I'm able to have treatment here in town. I took the first two in Oklahoma City but the drive was stressful so I found out I could have the opdualag about 10 minutes away. Jill, the Dr came out and we discussed it and the effect that prednisone might be having on my enzymes. He said the treatment lasts around 12 weeks in your system so he'd prefer to wait another week and check again. He didn't want to damage my liver. I was obviously disappointed but I appreciated his cautious approach. ❤️

Hey Donna, how are you doing? Currently dealing with opdualag treatment #3. Finally got my liver enzymes to cooperate. Glad to get it through. Having a PET scan on Saturday. We'll see. 🙃🙏👀👍

Hi David yes my 3rd infusion will be this Wednesday. And I have my CAT scans on Friday so like you crossing my fingers. Most of my side effects have calmed down really not feeling too bad at this point. We're keeping an eye on my thyroid cuz last blood test showed that it might be affected by the Opdualag treatment.

Big week for you. I'll think about you. Keep me posted? I'm managing the effects of the treatment pretty well. Fatigue is ever present along with the my swollen feet and right hand that doesn't work great.

Had my 3rd treatment on the Feb 11th All went well. Just a little rash that we are treating with hydrocortisone. My pet scan shows that the metastasis has shrunk by almost 50%. Remarkable since it's only been two treatments. The CAT scan was 2 days after my this treatments. Some of the nodules are barely visible. So I'm very pleased. I hope it continues.

Sounds great for you. My PET scan was weird again. Absolutely nothing glowed though a couple of nodules were bigger, one up to 2cm and another up slightly to 9cm. Dr thinks it could be because we had to delay treatment 3 by 8 weeks. We agreed to take two more infusions and then get a CT since nothing glowed. No more PET scans. We fight on. 50% shrinkage is very exciting. I'm glad for you. 🙏 🙏

Thank you. You keep fighting as well.