The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Opdivo Side Effects

Forums Cutaneous Melanoma Community Opdivo Side Effects

  • Post
    sandyd77
    Participant
      Hello,

      My husband was diagnosed with Stage 3 melanoma in March of 2018 and had a wide excision of the lesion in his back. His sentinel node tested positive at that time, but during the PET Scan for the Melanoma surgery, it was determined he had lung cancer (adenocarcinoma – NOT melanoma related) in his right lung. The wide excision surgery was completed with clean margins and the melanoma was put in the backseat for a while so we could take care of the lung cancer. Fortunately, he ultimately had his right upper lobe of his lung removed and there was no lymph node involvement of the lung cancer and he was declared clear from that issue. Amazingly enough, we would not have known about the lung cancer if the melanoma had not been detected. After several lung surgeries, we went back for the lymph node dissection in follow up to the melanoma surgery and 12 nodes were removed – ALL TESTED Negative. That took place in September of 2018. He continued to see his medical oncologist periodically and due to the amount of time that had transpired between his initial surgery and the testing of the negative nodes, it was determined there would be no adjuvant therapy at that time in November of 2018 and we would return in March. We had a CAT scan related to his lung cancer in February and all was clear. We returned to the medical oncologist in March and she suggested that we have a PET Scan prior to a return appointment in June to ensure all was good. We had the PET Scan in early May and it was determined the melanoma had returned to two spots in his back subcutaneously near the original site, and there were several nodules in each lung which proved to be melanoma (not related the original lung cancer) and he is now stage 4.

      My husband is a lifelong smoker who also has COPD – he is trying hard to quit but he is having a challenge with the stress. He had cut back a lot prior to the PET Scan. They started him on Opdivo in June – did not want to put him on Yervoy because of lung concerns. He has had two infusions so far and has tolerated them well except for some fatigue. They tested his biopsy and have determined he has a BRAF 600K mutation. We met with his oncologist yesterday and his doctor wants him to continue with Opdivo for now – we will have a CAT Scan after the 3rd infusion which is scheduled in 2 weeks. If there is no improvement from Opdivo after a few more treatments, she has indicated he is a candidate for targeted therapy. Regarding side effects, he has started to have some lower back pain and cramps in his legs as well as some swelling of his hands and fingers which seems to decrease as the day wears on. Just wondering if others have experienced this.

      As a side note, I am so grateful to be a part of this forum and what I have read so far has been so very helpful. I wish the best for my husband and all of you. Melanoma truly is a beast and those who have it are Warriors for sure. Thanks for any feedback.

      Sandy

    Viewing 0 reply threads
    • Replies
        MelanomaMike
        Participant
          Hi Sandyd77, your husband’s case reminds me of our MRF sister JulieInSoCal inwhich her team found NSCLC in her lungs and shes been battling melanoma for the longest! And like she even said, theres more meds to fight NSCLC then melanoma in the lungs. Can i ask, did your hubby have a CT Guided Needle biopsy to 100% “Confirm” melanoma? Scans are great for showing abnormalities but not used as a confirmation tool. Now, if they are Mel lung nodules, i can tell you before my Lobectomy (right lower lobe) the 8cm they extracted caused sever whole body deep Nerve pain, plus swelling in left leg and foot every day/night it would flare up & id pound down 4 Naproxines and a cup of coffee and it would subside, guess what? Since the Lobectomy it hasnt occured since! I can confirm we must have nerves in our lungs that when interupted by tumors/nodules, it presses against vessels, nerve cords, or blood flow causes deep, nerve whole body aches! It was terrible! I thought it was the Opdivo, nope, went right away after Lung surgery….
          I hope those nodules are not Mel nodules…thank you for being there for him…love helps..
            sandyd77
            Participant
              Thanks for responding. They are confident these are melanoma related and not related to the original lung cancer which had been cleared. We are hopeful the Opdivo will help and if not, will move to the targeted therapy. I wish you the very best on your journey and hope you can establish a new treatment plan soon! I have been following your posts and my prayers are with you!
              MelanomaMike
              Participant
                Hi Sandyd77, thank you and i sure hope as well that the Nivo starts ((or continues) to work, i know the feeling “we all do” going from scan to scan, its Nerve racking! Theres ALWAYS plan B, C & even a D, Im at Plan D, first 3 immunal weapons where no match for the strength my Melanoma seems to have i know plan D’s drug is gunna knock it out the park!…
          Viewing 0 reply threads
          • You must be logged in to reply to this topic.
          About the MRF Patient Forum

          The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

          The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

          Popular Topics