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Stage 4 Starting IPI/NIVO

Forums General Melanoma Community Stage 4 Starting IPI/NIVO

  • Post
    THMoore
    Participant
      OK everyone,
      I am in need of some positive reinforcement from all the melanoma warriors in this forum. I just got off a video call with MDA and my liver biopsy came back positive with Melanoma. I have had 4 treatments of OPDIVO and the 5 nodal tumors in my neck decreased in size and were no longer showing active on the PET scan. But a new tumor appeared in my liver in less than 2 months. I was thinking surgery would be an option, but the oncologist explained that he believes there are probably more lesions just not viewable with a CT or PET. So he recommended 4 full IPI/NIVO doses and explained that he believed my K601E melanoma was aggressive. In addition, he said that if this action did not work clinical trials would probably be my next best option. Being confined to a wheelchair, I have other emotional items to deal with.

      What I am asking for is positive stories, or advice from warriors who have received the IPI/NIVO course. Can I do this?

      Thank You All, Trent

    Viewing 4 reply threads
    • Replies
        MelMel
        Participant
          Trent, your oncologist would not have suggested the combo immunotherapy if they did not think you would be able to handle it. It is aggressive, I cannot say otherwise but the side effects are manageable and as long as you are vigilant you should be able to get through. The important thing to remember is that even if you are unable to complete all four treatments, you can still have an excellent response. You may have some challenging days dealing with fatigue, joint pain, neuropathy, etc. but as long as you inform your oncologist of any new symptoms ASAP you should be good. Immunotherapy is not like chemotherapy.

          In doing some research, I came across an interesting study which I will post below. Although having a K601E mutation you are not approved for targeted therapy however in this study the patient was allowed to use trametinib due to the fact that they failed conventional approved therapies. So on compassionate grounds, they were allowed to receive trametinib. The article is self explanatory just by looking at the title below. I would certainly inquire if this is something possible for you just in case you require it.

          “Metastatic BRAF K601E-mutated melanoma reaches complete response to MEK inhibitor trametinib administered for over 36 months”

          https://ehoonline.biomedcentral.com/articles/10.1186/s40164-017-0067-4

          Best of luck with your treatment and remain positive. You got this! Keep in touch.

          Melanie

            THMoore
            Participant
              Thx Miss Mel. I have read that article and even discussed it with the oncologist. I was surprised when he said no surgery to my liver because I probably have lesions or other areas already evolving. I just had my scans 2 weeks go. Scared the hell out of me. I am just ready down and worried for my wife. I truly appreciate you taking the time to talk. Trent
              THMoore
              Participant
                Mel,
                Also he said he was going to give me full dose IPI/NIVO and not flip dose. He explained that it was a lot stronger. What did you have?
                MelMel
                Participant
                  Trent, I had two full strength combo infusions before I got a liver issue and had to be taken off therapy. Five and a half months later I could only resume with Opdivo and have been on those biweekly infusions for 15 months. My oncologist suggested this following my experience with the combo. The therapy works great for some, others see stability and some need to go onto new treatments. I remember when my grandmother had a stroke and the nurse said “different strokes for different folks” well melanoma is much like that plus it is extremely unpredictable. Today, you are NED and then down the line you are not. I think this is why it drives people crazy. I look at it like there is more than one way to get from A to B and each of us needs to find our own unique way.
                  Melanoma at this stage is considered to be a systemic disease involving organs and lymph nodes. Removing a single tumor maybe possible but usually this means that there are melanoma cells present in tissues and fluids surrounding the area. Think of it as seeds which are still present even following surgery. So we need something systemic like immunotherapy to take care of the tumors first and surgery can be an option if you are dealing with a single stubborn remaining tumor which can be necrotic or inactive.
                  I know you worry about your wife. None of us know what our future holds so try to live in the present and deal with the issues at hand. Appreciate and respect the support of your wife but remember that much of what people worry about never materializes. Stress is not our friend but is our enemy so remaining positive and optimistic is the key for any successful outcome. Our loved ones are far stronger than we give them credit for and that applies for us too.
                  Melanie

                  THMoore
                  Participant
                    Miss Mel,
                    Thank you for taking time to talk. One of my main issues is I am wheelchair bound now and have very little control over my bowels. I don’t know how to handle diaharrea. Is it something you controlled with medication. Was it continual for 3 months. I just don’t know what to do. I don’t care about getting sick other then that.
                    MelMel
                    Participant
                      Trent, I never had diarrhea but I understand you. My suggestion would be to bring this up at your appointment prior to your 1st infusion when they go over everything in detail. It maybe a bit overwhelming so write down your questions so that you get them addressed. Once you proceed to your infusion, I would seek advice from the infusion nurses. They are extremely knowledgeable especially with practical matters and always more than willing to help in any way they can. I always find their advice invaluable.
                      The key to remember is if you do have side effects, let your oncologist know ASAP. Also, as you can see not everyone experiences all nor the same side effects.
                      Be optimistic and positive going in.
                      Melanie
                    Johnjk04
                    Participant
                      TH, in 2012, I had melanoma in the brain, spinal cord and plenty of organs (liver yes). I had two craniotomy, three Gamma Knife and entered the very first clinical trial of Ippi/Nivo.
                      For eight years, I have been NED.
                      Any side effects report to your oncologist.
                      TH, you got this, much better days are coming your way.
                        THMoore
                        Participant
                          Tanks John
                        AMcReader
                        Participant
                          Hi Trent,

                          I’m sorry you’re dealing with this, but if I were you I would try to hang onto the fact that Nivo is already working in your body it just can’t get the whole job done alone. I did Nivo on its own for 8 months and it worked partially well for me too, it helped to keep my melanoma from spreading but eventually we saw that one of my lesions was growing.

                          Anyways, I switched to Ipi/Nivo, made it through 3 of the 4 rounds before experiencing some extreme liver issues, but then was able to use steroids to get that under control. The good news is that after just 10 weeks on Ipi/Nivo I saw a 50% reduction in tumor size. Then, I was able to add in some radiation and get to what they believed to be disease-free (sometimes it’s hard to tell with the lungs because dead tissue tends to linger).

                          I have been disease free for a year. I do currently have some suspicious spots on a scan, but both my doctors and I are hopeful that those are not melanoma. I’m getting a biopsy in about a week.

                          My point is that, Ipi/Nivo can work wonders even after being on Nivo. Be aware of the possibility of side effects. I dealt with an upset stomach almost the whole time, a little bit of vomiting, some fatigue and lots of fevers and chills. However, I was able to work full-time on treatment, parent a baby, throw a first birthday party, take my daughter on her first plane ride, celebrate Christmas, road trip to see my family and much more! You can too. Just be patient with yourself and give yourself time to rest when you need it.

                          Good luck, Trent, and please keep us posted!

                            THMoore
                            Participant
                              Amanda thank you for taking time to talk. One of my main issues is I am wheelchair bound now and have very little control over my bowels. I don’t know how to handle diaharrea. Is it something you controlled with medication. Was it continual for 3 months. I just don’t know what to do.
                              Edwin
                              Participant
                                My stage 4 melanoma got much worse, while I received Keytruda immunotherapy. Ipi/nivo immunotherapy saved my life, but very bad diarrhea began a few days after my first infusion of ipi + nivo. To control the diarrhea I took Imodium and Prednisone and wore adult diapers at night and whenever I was more than 3 minutes from a restroom. Most people receiving ip/nivo do not experience such bad diarrhea. After a month I no longer needed adult diapers. After recovering for 9 weeks I was able to receive the remaining 3 ipi/nivo infusions with the dose of ipi reduced 50%. Contact your doctor promptly, if you have worrying side effects.
                                THMoore
                                Participant
                                  Thx Edwin,
                                  Could you eat or what did you do? My wife will have to help clean and dress me. Did you cramp or did it just happen. Since my injury I am highly aware of any thing different in my body. I knew things were wrong before doctors did. Melanoma was the first that caught me by surprise. And guess what, it came from a unknown primary. I had skin cancer checks every year and never had anything. This is my biggest fear. Not knowing what to do or handle this side effect. I always have stayed constipated.
                                  THMoore
                                  Participant
                                    Thx Edwin,
                                    Could you eat or what did you do? My wife will have to help clean and dress me. Did you cramp or did it just happen. Since my injury I am highly aware of any thing different in my body. I knew things were wrong before doctors did. Melanoma was the first that caught me by surprise. And guess what, it came from a unknown primary. I had skin cancer checks every year and never had anything. This is my biggest fear. Not knowing what to do or handle this side effect. I always have stayed constipated.
                                    Edwin
                                    Participant
                                      When I was awake, I usually had a couple minutes warning that I needed to reach a toilet. I lost too much weight. In the first few weeks after beginning ipi/nivo immunotherapy I could not eat enough. My oncologist postponed my second infusion of ipi until I regained weight.
                                      AMcReader
                                      Participant
                                        Hi Trent, I had abdominal pain, but I really did not suffer from diarrhea. I know some people on this board did, but not everyone does and you may not either!
                                      Sharon93065
                                      Participant
                                        I have not been on this forum in months. I will say this is the place to get the help from others that have gone on before us.
                                        2017 stage 4 metastatic melanoma. Received 3 of 4 Opdivo/Yervoy. Then high liver numbers. After 4 months of Prednisone I was
                                        put on Opdivo maintenance for 24 months. Petscans every 3 months. Tumors in lung, groin, armpit, back etc. Gone! Started shrinking right away.
                                        Then after 2 years we stopped treatments. As he did with other patients like me. Supposed to have petscans every 3 months. Had one 2 days after after
                                        7 months. We kept me out of driving all the way to Kaiser Woodland Hills because of virus. Phone appt Wed to verify results. I asked how other patients
                                        were doing, he said there were 5 like me and the beast did not come back. I still have to take 125 mg of thyroid every day.
                                        In the beginning treatment gave me rashes. So treat with eczema cream. Also take Benadryl at night for them. I still have fatigue. But I’m retired.
                                        So this treatment works! Oh also get brain MRI’s to make sure not spread to brain it does I read in 60% but he said radiation would zap that if that happens.
                                        Stay positive! Immunotherapy and prayer heals!
                                        Sharon, Simi Valley
                                          THMoore
                                          Participant
                                            Thank you Miss Sharon for sharing your information with me. All positive stories really help. Love and hugs.

                                            Trent

                                          Sdmotorcop
                                          Participant
                                            Hi Trent,
                                            I was originally a 3C with a single lymph node involved. I went to stage 4 (mets in lungs and lymph nodes) in April after being on Nivo for 10 months. My oncologist stopped the Nivo and started me on IPI. I was able to make it through 3 of the 4 doses then my liver numbers went wonky. I had a pet scan at the end of July that showed my lung Mets had not grown in size from April (didn’t show a decrease in size either). The uptake of the stuff they used for the pet scan decreased which my oncologist said was a good sign. I also had a palpable lymph node in my groin that shrunk by 2/3rds. I will take both of those as wins.

                                            My biggest ongoing side effect is fatigue. It’s pretty much rules my day (I just plan my day according to how I feel when I get up). I had several other side effects that came and went. I had a fever after my 3rd infusion that lasted about a month. It ranged anywhere from 99 to 103. It usually started mid to late morning and lasted till late evening. Due to my high liver numbers, the oncologist had me alternate Motrin and Tylenol. That kept the fever down in the 99 range which was manageable. I ended up getting a very dry mouth, mouth sores and loss of taste for about 3 weeks. I just kept water around me 24/7 which helped.

                                            I did not get any of the stomach side effects. So, as you can tell, everyone’s body reacts differently. And to answer your question… yes, you can do this!!

                                              THMoore
                                              Participant
                                                Thank you Bruce for your input. Are you BRAF positive or like me. I truly appreciate you taking the time to answer. T
                                                Sdmotorcop
                                                Participant
                                                  Hi Trent,
                                                  I am BRAF negative
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