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.

98th dose of Nivolumab

Forums General Melanoma Community 98th dose of Nivolumab

  • Post
    GreggL
    Participant
      Hi everyone! I wanted to ask anyone out there that has been on immunotherapy for years how they have been feeling? I was originally diagnosed in 2014 at stage III. After the brutal course of Interferon my cancer came back within 4-5 months and spread to my right lung. I was now officially stage IV and in early 2016 I started on Nivolumab alone. I started on the twice monthly regimen and after a few years or so I switched to once monthly. I was supposed to be on it for one year, one turned to two, two turned to three, then basically they said since I’m tolerating it well and it’s helping I will stay on it until any recurrence. I just completed my 98th dose on December 2nd. I’m still here so I can’t complain but I have been having constant unbearable pain in my cervical spine. Has anyone else here done a large number of treatments, and if so, how have you been feeling? If I add the Interferon and Nivolumab I have done 250 treatments all together. It has taken a toll for sure and if anyone is experiencing this I would love to hear about it. I always tell my onocologist I’m fine out of fear he might take me off my treatment that is keeping me alive. Thanks everybody. Gregg
    Viewing 2 reply threads
    • Replies
        ed williams
        Participant
          hi Greg, did interferon high dose phase summer of 2012, came back stage 4 June of 2013 with 3 cm right lung and 3 small brain Mets. Did cyberknife Oct. of 2013 and on rescan brain was clear which let me into clinical trial checkmate 067. It was blinded so for first couple of years I didn’t know what arm of the trial i was in. Eventually trial unblinded and I find out that I was in nivo arm and I stayed on treatments for 5 years and 9 months until grade 3 colitis kicked me out. Sore joints and fatigue have been there for the early days. Developed stomach issue that have not resolved (acid reflux and now crazy gas, burping after food for hours after meals). It has been two years since I stopped and coming up on 8 years since starting trial and 10 years since first skin biopsy from my back. I get the not wanting to stop part, if it is working keep going was my mind set. I haven’t come across anything that would change my opinion in the research. How are the scans?
            GreggL
            Participant
              Thanks for the response Ed. It’s always a good feeling to hear of other people that have progressed to stage IV that have made it so many years beyond what was expected. My scans have been good since that last negative one in 2016. I’m doing my PET scans now every June and December and actually have my next one this Wednesday Dec 15th and I’ll get the results on the 30th. I don’t know if that is a normal waiting period for most but I go to the VA hospital. I actually called Bristol Myers Squibb awhile back to ask about being on Nivolumab for so long but they will not tell patients anything at all. They’ll sure ask plenty of questions but they won’t give any answers to yours. That was a little frustrating to me. Gregg
              ed williams
              Participant
                if you go to fig.#3 of 5 year survival data you will see in nivo arm 24 patients of the original 313 who started trial were still on treatment at the 5 year data collection. https://www.nejm.org/doi/full/10.1056/nejmoa1910836
              ThinkingPositive
              Participant
                Cutaneous
                Hi Gregg and Ed,

                My oncologist is stopping my pembro in January if scan is complete response again.  That will be 17 months of infusions. She said there was no standard for stopping but some studies (SafeStop) are looking at this.

                  ed williams
                  Participant
                    Interesting how they are looking at this topic, here is a recent article and you will notice the financial aspect comes into play which makes sense. I am not sure if stop gap design will answer the question since best drug combination is Ipi+ nivo and it isn’t part of the trial. also very soon LAG-3 plus nivo should get approval which will change the landscape of first line treatment. using PET-ct early would also make sense since ct scans don’t tell the whole story. I had ct scans on regular basis as part of trial I was on called checkmate 067 and ct kept showing partial response but a few years later on PET-ct the tumor had no SUV uptake, meaning things tumor on ct scans is probably just dead tissue or scar tissue. https://jitc.bmj.com/content/9/3/e001901
                  marta010
                  Participant
                    Hi Gregg- my husband has his 50th Keytruda infusion at the end of January. He’s also been on Dabrafenib since 2014. Main side effects have been fatigue,muscle/joint aches and pains and recurrent adrenal insufficiency. Cancer status is pretty clear in his body but watching a stubborn area in his brain which his Neuro is pretty sure is necrosis from prior gamma knife treatments. All in all, he’s doing pretty good. Coming up on his 10 year diagnosis anniversary in March 2022. He is a remarkable fighter- had jaw reconstruction earlier this year which was due to radiation early in his journey. We’re thankful for every day! Happy holidays and prayers for a healthier 2022!

                    Ann

                      GreggL
                      Participant
                        I was actually supposed to start on Keytruda instead of Nivolumab and didn’t find out the change of plans until the day I was supposed to start. I don’t know if it was due to availability or my oncologist talking with other oncologists but it seems to have worked out well. It didn’t matter to me either way. Your husband sounds like he has been through a lot and it always makes me happy to hear of those who are still around to talk about it so many years later. Approaching ten years is inspiring to me. Happy Holidays to you and your family as well. Gregg
                  Viewing 2 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.