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Starting Opdivo next week

Forums Cutaneous Melanoma Community Starting Opdivo next week

  • Post
    studiodad
    Participant
      Curious to learn first timers experience with initial treatment with Opdivo. I have stage 4 with no tumors at present. I have melanoma in the bone of my right scapula that will require radiation beginning next month. My diagnosis is stage 4 metastatic subcutaneous melanoma. I will be receiving Opdivo every 30 days. I know reactions to Opdivo vary but I am curious (fearful) of the unknown. What did you experience? I am 74 years old and overweight. I would have no idea I was sick except for the cat and pet scan results and the needle biopsy of the scapula. One tumor excised on my back 1 1/2 years ago that was metastasis from cancerous mole on my back removed 5 years earlier.
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        Edwin
        Participant
          Are you sure you will receive Opdivo every 30 days? I receive Opdivo every 28 days. You are fortunate that the melanoma in your bone is not painful. I felt sharp pain in my rib, before a PET scan showed melanoma there. Walking became very painful, before another PET scan showed melanoma in some ribs, some vertebrae, hips and both femurs. I received Yervoy and Opdivo immunotherapy. Now I just receive Opdivo. I was very sick with the combo immunotherapy, but I just have a little fatigue for a couple days after an infusion of Opdivo. I received an infusion of Opdivo yesterday and bicycled over an hour this morning. I am 76 years old.
            studiodad
            Participant
              Thank you Edwin. You are absolutely correct. I checked my schedule and treatments are 28 days apart. No pain, soreness or loss of function in my scapula but cat scan and follow up needle biopsy confirmed melanoma in the bone. I know all patients have different side effects but with your similar age and Opdivo experience I am hopeful that mine will also be fairly mild, or at least manageable. Good luck in your treatment. Your comments were encouraging.
              Edwin
              Participant
                immunotherapy fatigue: I had Opdivo immunotherapy Wednesday morning. Thursday morning I bicycled half my usual distance. Friday morning I ran 5 kilometers in 28:21. This morning ( Saturday ) I ran 10 kilometers ( 5 K times: 27:38 and 26:18 ). Monday I should be able to run 15 kilometers.

                diet: The day of and the day after Optivo immunotherapy I eat some meat to slow down my digestive system.

              Ellie_82
              Participant
                Hi Studiodad, remember Jimmy Carter received immunotherapy for melanoma when he was 92 and did just fine. He received Keytruda but generally side effects of Keytruda and Opdivo are similar. Honestly, not even the doctors can predict which patients will develop serious side effects with these drugs, but thankfully most people do fine. Unless you have some serious conditions, such as advanced heart failure, or liver failure, or uncontrolled immune conditions, I wouldn’t be too worried about side effects.

                I agree with the other posters that you are lucky that melanoma doesn’t cause you symptoms. Patients like you, with low to no symptoms and limited number of metastases tend to do better on immunotherapy in terms of efficacy. I am hoping that you get a great long term benefit from opdivo and very few side effects. All the best!

                  studiodad
                  Participant
                    Thank you for your encouraging comments. I feel better about the road ahead thanks to you and other posters.
                  MelanomaMike
                  Participant
                    Yeeeeeha! Im glad you decided to get going with the Immunal Therapy Opdivo, your team decided on a good, effective one with your condition, you and I are close in age, you 74, me 50, andbi handled Opdivo “by itself” very well, no side effects really, tired hours after the infusion but the next day i was Spry! Like i said in my last post week ago or longer, youll write us and say “””Man! This is Comfortable!”””… youll see, good job Studio…
                      studiodad
                      Participant
                        Thanks again Mike for your comments. I will be thinking about you as well as you continue your fight.
                      Sdmotorcop
                      Participant
                        Hi Studiodad,
                        Glad to see your going with opdivo. I think it’ll give you peace of mind that your actually attempting to fight this crappy cancer (as opposed to not doing anything). I am 56 and in ok health ( dealing with the normal aging stuff). I am currently at a 3C (4.3mm nodular w/ulceration, WLE , snlb x2 w/1 7.3mm, Braf neg). This is my third melanoma. I started opdivo in June on a 28 day cycle. I have 2 side effects from the opdivo. First… I’m pretty gassed most of the time. Most of the time my batteries run out around mid afternoon. If I can, I take an hour nap to recharge. That usually does the trick and allows me to finish the day. Second… I’ve been dealing with what Opdivo makers call PMR like symptoms (polymyalgia rheumatica). It effects the shoulders, upper arms and hips. It manifests itself at night which I manage with pain meds. Daytime is managed with Tylenol and some Motrin. Aside from being a bit more tired then usual after the infusions, those are the only two that I’ve been dealing with.

                        I know in one of your last posts you were worried about quality of life issues. Aside from the non stop doctor appointments, I try to live my life like I did before. I still fish and do my daily honey do’s. My 7 year old grandson makes sure I am active when he comes out to visit.

                        Remember… We are Cancer Fighters, not cancer patients!

                        If life gives you lemons, throw them back and tell them you want oranges (or whatever fruit you want)!

                          studiodad
                          Participant
                            Thanks Bruce. I will demand oranges. Your comments are much appreciated.
                          RichInLife2
                          Participant
                            Hi, studiodad. My experience with opdivo was overall good. The actual infusions were painless and I had only mild fatigue the day or two after. I did have some side effects and my treatment was stopped after 8 infusions due to colitis. I’m doing fine now and my scans have been stable since last November. My last PET scan showed no active disease. More details in my profile, but I went from stage IV a year ago with mets in my lungs, liver and brain (the brain met was treated with radiation) to being told that I have an 80-85% chance of not having a recurrence.

                            They’ll probably give you a pamphlet listing all the symptoms for the most common side effects. Notify your care team immediately at the earliest sign of any of those symptoms. Most of the side effects can be managed if caught early. Immunotherapy has saved a lot of lives. I’m not saying there’s nothing to be afraid of, but if I had to do it over again, I would say “hook me up and start pumping it in now!”

                            Good luck,

                            -Rich

                              studiodad
                              Participant
                                Thank you Rich. After reading your uplifting comments and those of other posters I am ready and optimistic about the outcome. Thanks.
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