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Should I Stop IPI/NIVO
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Should I Stop IPI/NIVO

› Forums › Should I Stop IPI/NIVO

  • Post
    • October 31, 2020 at 9:11 pm
    THMoore
    Participant
      OK here’s the latest with my voyage down the IPI/NIVO lane. My first dose, I only had a rash and fatigue. My 2nd infusion, I loss my thyroid, got extreme fatigue and fever. Now after my third infusion, I have a rash, fever, loss of thyroid, starting to lose pituitary, throwing up and dry heaves, and severe diarrhea to the point I thought I was going to die. I am on steroids now to help with the symptoms. Wow, I had no idea, I was even having diarrhea. Anyway, I have pushed back my forth dose and scans. There is no way I can travel until these items reside. LDH and other blood work still mostly normal with exception of thyroid and pituitary.

      I am to the point I don’t even want to know my status. Is this wrong? I feel like I just want to live out what time I have without knowing what’s happening. Rather just get sick one day and go to the hospital. Am I crazy. I am just tired. I really don’t know how everyone goes on and on. Maybe Im just having a bad day. All I know is man this last dose, sure hurt. MDA still wants to give me another, no matter the results. I just wanted to hear some thoughts and opinions from my friends and warriors.

      Much Love Trent

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    • Replies
        • October 31, 2020 at 10:12 pm
        A
        Participant
          What if you get complete response? If you stop therapy now, all your suffering from the combo to date would be for nothing. Lost thyroid and pituitary function can be managed with hormone replacement therapy. Maybe diarrhea can also be brought under control.
          Nobody can make a decision for you, but I think MD Anderson is right advising you to get another infusion/see the scan results before making any decisions. Just my 2 cents.
          • October 31, 2020 at 10:59 pm
          Edwin
          Participant
            You have received 3 ipi/nivo infusions and your side effects have been getting more severe. I do not know why 4 ipi/nivo infusions is standard instead of 3 or 5. In your situation I would be tempted to stop ipi/nivo and move to nivo alone. You might seek a second opinion. I received 4 ipi/nivo infusions, but side effects from my 2nd, 3rd and 4th infusions were much milder than from my 1st one.
              • November 1, 2020 at 1:59 am
              Daisy2018
              Participant
                Oh, Trent
                I m sorry it’s been a rough road. I always tell myself and my kids when things get dark and scary, sleep on it. Tomorrow will be another day. You are taking steroids you should start feeling better soon. You said we are all warriors here. The winning doesn’t come easy sometimes. Remember the prize here is your life. You are a warrior too. Thyroid and pituitary can be replaced with couple pills. Watch carefully what you eat, try not to eat greasy heavy food. You seem to be young based on your pictures. You may survive it and live long life yet. I would listen to your doctor. Stay strong. People go through a lot to fight cancer. This is freaking cancer! I know I talk a lot here about my dad. He is about to lose his second adrenal gland and would have to go on several pills to replace it He will still do it. He is 80 now. He wants to live. Hang in there man. Listen to the doctor. If doctor said you can do it then you can do it. Think about winning this fight and going fishing again next summer being NED. Hugs to you!
              • November 1, 2020 at 1:46 am
              Mark_DC
              Participant
                Dear Trent,

                Sorry for all the side effects you are going through. I think it’s a complicated choice: you have to trade-off the side effect costs against the potential benefits of continuing the treatment (or modifying it to drop ipi and doing nivo only, or to move to some different treatment).

                When taking ipi adjuvant stage III i developed side effects, didnt think they were that serious, but I was taken off treatment. Also my side effects worsened after being taken off – the doctors guessed that they would get worse so took me off. I was really annoyed as I wanted to cure my cancer, but I had underestimated the side effects. I believe you have active disease which would mean sticking with the treatment for one more round and then moving to nivo only, but against this you have the side effects and celeste has posted some studies which show that you dont have to do all the ipi/nivo doses to have an effect. The side effects show the immunotherapy is doing something.

                In short, you have a difficult decision. It seems you have anyway pushed back your fourth dose so presumably the doctor will only give you this if your side effects dampen and he thinks a fourth dose can be tolerated. But against this three may be enough, or you may have other options. So I think discuss with your oncologist and probably get a second opinion too, can help you understand better. Also maybe your oncologist can suggest ideas to lessen the impact of your side effects.

                Am sorry for all you are going through and for the severity of the side effects. I wish you strength to pull this off.
                Good luck Mark

                • November 1, 2020 at 2:00 am
                Sdmotorcop
                Participant
                  Trent,
                  I feel your pain and know what you’re going through. I stopped Nivo in May due to progression (Stage4 from a 3C.. 10 doses). Lung Mets, stomach, psoas muscle and several lymph nodes. My oncologist started me on IPI in late may. I received 3 doses of Ipi before I had to stop due to some really high AST/ALT numbers. I was lucky with the Nivo (polymyalgia Rheumatica, fatigue, generally just feeling blah). My first dose of Ipi was great with no real side effects. My side effects started with the second dose. I had high fevers that lasted a month, extreme fatigue and tiredness, loss of taste for 5 weeks along with what I would describe as bone pain.. The polymyalgia Rheumatica ramped up to the point where I can barely lift my arms and or walk… there were days when I wondered if the cure is worse than the disease..

                  Fast forward to a few days ago.. doc sent me in for a FU pet scan.. it showed my lung Mets have “resolved” with the other Mets decreasing to minimal levels…
                  NED… nope.. but getting there… I only had 3 of 4 Ipi and 10 of 12 Nivo.. I know the side effects really suck.. but as you see.. you can get results with partial treatment.. from one Mel warrior to another… hang in there!

                    • November 9, 2020 at 3:15 pm
                    THMoore
                    Participant
                      Bruce how big was your tumor burden in your lungs and elsewhere?
                    • November 1, 2020 at 2:18 am
                    Daisy2018
                    Participant
                      I m sorry Trent, I didn’t read your whole profile before responding.
                      I want add that I remind myself God doesn’t give us more than we can handle. Give yourself couple days, a week maybe and then talk to your doctor about continuing or not. Doctors see us patients all the time. See what he says. American doctors don’t usually suggest something that they know will hurt and they would still suggest it, he believes benefit may outweigh the risk.
                      • November 1, 2020 at 4:06 pm
                      Bubbles
                      Participant
                        Melanoma and the decisions around it are never easy. Here is a report pertinent to the issue you are facing from 2017: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/40-of-melanoma-patients-stop-ipinivo.html

                        I think the title says it all – 40% of melanoma patients stop ipi/nivo due to side effects…BUT…efficacy is about the same!!!

                        I would discuss this data with my docs were I in your shoes. Hope this helps. Celeste

                          • November 1, 2020 at 5:24 pm
                          triciad
                          Participant
                            Trent,

                            Sorry that you’ve been through so much. With all these treatments, the side effects can be brutal.. I did ipi/novo a few years ago. I did not get my last infusion due to pneumonitis. I also got adrenal insuffiency from it. And now, I do believe my thyroid is going. However, both my brain scan and my pet scan never looked better. I have had over 50 brain Mets during my battle (12 years). Thank God for Gamma knife. All of it is worth it if your chance to live keeps extending.

                            Anyway, sometimes when we are going through these wicked treatments. We get tired; we want to throw in the towel. I say go for that last treatment. It could be your magic bullet to kill the beast. If your doctors say yes, you should, too! God bless and God speed. Go get that beast!

                            All the best,
                            Tricia

                            • November 3, 2020 at 1:19 am
                            gregor913
                            Participant
                              I did yervoy 10mg and got very sick. Nothing like your experiencing with the thyroid. I had a fever for 15 straight days with rash all over body. ( feet. Arms)I took a week off of yervoy then took my final dose. Prayers its alot to think about. Its been 5 years since I took it.
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