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Failed Nivo…onto the combo?

Forums General Melanoma Community Failed Nivo…onto the combo?

  • Post
    AMcReader
    Participant

      Hi Friends,

      After relatively good success on Nivo the past few months, the tumors in my lungs are growing. Originally, my oncologist had thought surgery might be a good option since Nivo was keeping the rest of my body and brain in check but I met with the thoracic surgeon today and he doesn’t want to do surgery since the tumors are growing and lighting up. I am bummed because I was looking forward to being disease free but trying to stay positive. Does anyone have any personal stories about failing Nivo and then having success on the Ipi/Nivo combo? I could really use some good news right now…

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        gopher38
        Participant

          I don't have the info you're looking for (I'm on a ipi/nivo trial right now, but no experience with just nivo), but I just wanted to say that I hate the term "I failed [treatment X]".  Treatment X failed you, and they've got to make it better.  I'm sure the scientists working on this would agree with me.  There's something out there that will work for you, even if this didn't.

          By the way, I also don't understand why the surgeon wouldn't want to operate since the tumor is growing … ?!!?  Isn't that the time TO operate?  I'm sure there's a reason, but sounds strange to me. 

          Love your picture, both of you.  I know I've read of people having success with the combo compared to just nivo, so someone is going to chime in.  Sending positive vibes.

            AMcReader
            Participant

              You’re right! Nivo failed me! That’s a great way of thinking about it.

              I’m also confused about the guidance not to remove tumors in my lung that are growing…literally, that was the initial reason we were planning to remove them so when the PET scan confirmed they were still growing I viewed it as, yep, we knew that!!!! I haven’t spoken to my oncologist yet but will definitely want her take and maybe a second opinion. This sure is a roller coaster ride. One that I wish none of us were on!

              Also, I see that you’re in Minneapolis! I love that city! Some of my best friends live there — Prospect Park to be exact. I hope to be visiting again next summer!

            Bubbles
            Participant

              Sorry you are dealing with this.  But the short answer to your question, "Can you respond to ipi/nivo after progression on nivo alone?" – is:  YES!!!

              Here are links to lots of posts and articles on the subject:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=after+nivo  

              I would also speak to my oncologist about the possibility of adding radiation.  It may not be possible depending on the location of your lung tumors, but it might. And we have learned that when radiation is COMBINED with immunotherapy, responses are greater than when either are administered alone….in the brain AND the body.  Here are tons of articles and posts (including the second one in the list, posted this month and addressing the body specifically): 

               https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy  

              Hang tough.  Hope this helps.  I wish you my best.  Celeste

                AMcReader
                Participant

                  Thank you, Celeste! I always appreciate your guidance and the round-up of articles on your blog. Everyone says but, dang, we are so beyond lucky to have you!

                rosa1
                Participant

                  Bubbles is right on trying radiatons. Back in 2011, I had to have a thoracotomy for a lung met on the left side. The one on the right was too small for surgery, so the doctor decided for me to have radiation on that one, since trying ipi without any response. When I did the scans, the met was gone. I'm not sure if it was the radiation alone or the combination with ipi that did it. But anyway, just ask the doctor if radiation is an alternative at this point. Wish you the best. Love your picture with the baby.

                  Rosa

                    AMcReader
                    Participant

                      Thank you, Rosa! I went back and read your story and was happy to see you’ve been NED for quite awhile now!

                      I am going to bring up SRS to my oncologist again. I think her worry is at this point the tumors are a bit too large to do SRS without potentially causing other issues but I believe that’s part of the reason I’ve been able to maintain clean brain scans — I had a large tumor removed from the left lobe of my brain in March and quickly followed that up with SRS to make sure to kill off any surrounding micro-cells. So far, it’s done the trick!

                      I’m glad you like my picture. That’s my beautiful baby girl — she was just 3 weeks old when my Melanoma was discovered in March, nine months old now! She is the reason why beating this is so unbelievably important to me. 

                      Sending light your way,

                      Amanda

                    rosa1
                    Participant

                      Unfortunately my NED status lasted only about a year. Last November, I developed a met in the small intestine and had to have a small bowel resection. I ended up in the ER as the pain was excruciating. After the surgery I did the combo Nivo/Ipi and after the last dose, I developed a serious itchy rash throughout my body and face. I was on steroids for about 2 months. I'm now on maintenance Nivo. My follow-up scans will be this Monday and I hope and pray everything will be ok. The fight continues………I feel like living on a rollercoaster, it just sucks!

                        AMcReader
                        Participant

                          That does suck!!! I hope these next scans take you back to the land of NED though! Please keep me posted!

                        MelanomaMike
                        Participant

                          Hi Sis, sorry im late getting to your post, been feeling Icky the past few weeks…

                          wow, ok, your story is very simular to mine, the Ipi and Nivo was Bitter/Sweet with my tumors {all of them being in my lungs} are responding by NOT growing except for "One" tumor wich i call the 5.4cm Mel Monster lol, hes NOT responding to any treatment thus far since Nov of 2017 {Pembro, Ipi & now Nivo by itself. Whats curious for me is, why wont your surgeon do a surgery on the tumor {or tumors} that are defying treatment? Cons out weigh the Pros? to many to yank out?  im to have a surgery in Dec on that Mel Monster {if i can keep my head outta my ass} cuz its just gunna grow and grow and grow! i know if theres "to many" tumors spread out in different places within the lobes, its kinda not possible without leaving you with any lungs to breath with but, how many tumors are there? i havnt really did a count myself, i wanna say around 6 or 7 counting the 5.4cm..Gosh this sucks huh? its like come on! somethings gotta give here! i know for me being a wus & backing out my surgery last week wasnt good for me, but still! hahaha…

                          either way, let us know whats going on, i know our shared Boat has some Holes in the floor but, as long as we have buckets & stay faithfull, we will stay afloat…Right?…xoxox

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