Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyMelanomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
May 27, 2024
 · 
Reactions

Answer Summary

Members shared their experiences with immunotherapy using Opdivo and Yervoy for metastatic melanoma, with many reporting positive outcomes... Read more

Members shared their experiences with immunotherapy using Opdivo and Yervoy for metastatic melanoma, with many reporting positive outcomes including achieving NED status and significant tumor shrinkage, though timelines and responses varied widely. Several members described manageable side effects like fatigue, joint pain, and headaches during treatment, while others experienced more serious complications including severe colitis requiring hospitalization, pituitary gland inflammation, lung inflammation, gastrointestinal issues, thyroid damage, and uveitis, emphasizing the importance of seeking medical help quickly if symptoms worsen after infusions. A recurring theme was gratitude for how far treatment has advanced, with members acknowledging that these immunotherapy drugs are lifesaving options that would not have existed even a decade ago, and encouraging each other to stay positive and live fully between scans.

A MyMelanomaTeam Member

Thank you my brothers:). Let's live our lives between scans!:)

April 13, 2025
A MyMelanomaTeam Member

Prayers your way this sunday

April 13, 2025
A MyMelanomaTeam Member

Hi David, first of all never apologize for being long winded ok? We all have our stories and it's great you felt like sharing. It helps all of that wish to read what other people have gone through.
I understand the battle your described. A week or two after my first infusion of Opdivo and Yervoy I has suffered through about what felt like attacks on my liver which the tumors had covered. Too numerus to count my oncologist mentioned, and when I described the attack to him, he explained there was a war going on in there.
The infusions have cranked up my immune system so much that it has attacked my eyes, skin, kidneys, and inflammation in my body. Presently my eyes again, it's called Uveitis. Treated with eye drops.
I also had two lesions my brain, thankfully for the Gamma Knife it destroyed.
Brain scans have showed all clear now.
I just had a biopsy in a small lymph node that has shrunk the last scan but it was lit up for some reason, the biopsy proved nothing but necrosis material which means like you the immunotherapy is working great!
Best wishes to you, P.M.A. Positive mental attitude.
Jim2

April 12, 2025
A MyMelanomaTeam Member

Stage 4 metastatic melanoma unknown origin. Recognized a walnut sized lump in my left arm pit in June 24. It grew to the size of a mini football by August. One other nodule in my lungs and another by my left shoulder blade.The surgeon and oncologist suggested immunotherapy at that point due to its size. Ipi/nivo for 4 months and now on nivo every 4 weeks. At the start, I was drained constantly which was explained as "the battle lines were being drawn". It was a version of the civil war in my body. That lasted for about 3 weeks then I could get around more and work. I recall a point where the whole left side of my body was swollen. The nurse manager at City of Hope called it cancer explosion. The good guys were winning and my lymph nodes were backed up filtering all the dead "soldiers". It was weird but good:). Dropped the ipi 6 weeks ago now on nivo only. For the last 3 weeks lots of GI issues. If I'm not running to the bathroom, I'm constipated. Managing with Imodium, metamucil, probiotics and beano for the bloating. I'll get a few good days then a bad day or two. I have to watch what I eat. Dropped a few lbs which I really can't afford, but the other option is not very attractive if you know what I mean:). I recall my surgeon saying even 10 years ago he would have given me 3 to 6 months to live. So, I am grateful and amazed with how these meds are saving my life. Ah, I have an infusion tomorrow and I'm bringing all the nurses Livesavers:). I feel it's only appropriate. Sorry for being so long winded:).

April 10, 2025
A MyMelanomaTeam Member

I have Metastatic Melanoma. I discovered a lump under my right arm in my lymph node. It was 5cm. My brain scan was negative. My PET Scan showed just the mass in my right underarm. I started my infusions on 10/09/23 (ipilimumab (YERVOY) and nivolumab(OPDIVO). I had 4 infusions (one every 21 days for 4 months) of Yervoy and Opdivo. Then I began receiving just the Opdivo every 21 days to last for 2 years. When I had my first doctors appointment after 2nd infusion the mass had significantly shrunk. My mass has stayed very small.
My PET Scans have stayed relatively clear with no new signs of cancer.
The infusions have been fairly easy except for a little tiredness.

It is strange that I have never had Melanoma prior.

August 10, 2024 (edited)

Related Questions

View All
A MyMelanomaTeam Member asked a question 💭
Ocala, FL