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Stage 3B +node, resection, now in Ipi Trial, randomized to 3mg arm

Forums General Melanoma Community Stage 3B +node, resection, now in Ipi Trial, randomized to 3mg arm

  • Post
    TerraO
    Participant

      I am now six weeks out and healed from surgery, FEELING FINE! Clear PET/CT and MRI. I agreed to be reviewed for the Ipi vs. Interferon trial and got randomized into the 3 mg Ipi arm. I begin next week.

      We are very happy to finally be moving forward with treatment, and relieved that I will be getting Ipi, but not too much 😉

      Of course, cue the worrying about side effects.

      I've heard the first infusion generally goes well and that it is infusion #2 that triggers effects, if any. I just want to get started, and get this over with. Again, I shake my head that I FEEL FINE and now have to 'willingly' enter into something that will likely make me feel not fine…so that can hopefully feel fine for a lot longer.

    Viewing 8 reply threads
    • Replies
        katie1
        Participant

          This all sounds like good news!  Some people sail through the Ipi with no side effects.

          Just be aware of any potential changes and then continue on with your life as much as possible.  The initial 12 weeks are pretty overwhelming but it will become your "new normal."

          Kate

          katie1
          Participant

            This all sounds like good news!  Some people sail through the Ipi with no side effects.

            Just be aware of any potential changes and then continue on with your life as much as possible.  The initial 12 weeks are pretty overwhelming but it will become your "new normal."

            Kate

            katie1
            Participant

              This all sounds like good news!  Some people sail through the Ipi with no side effects.

              Just be aware of any potential changes and then continue on with your life as much as possible.  The initial 12 weeks are pretty overwhelming but it will become your "new normal."

              Kate

              Gene_S
              Participant

                Hello Terra,

                My husband was in the clinical trial of IPI with 10 mg/kg and GMCSF.  He did really good with a few side effects but we still managed to live life and take vacations and he was Stage IV.

                Start with a positive attitude as this may help and hopefully no adverse side effects but be sure to keep your oncologist notified of any changes.  Good luck to you.

                If you would like read more about my husband on his profile page.

                Judy (loving wife of Gene Stage IV and now NED for almost a year and a half)

                  Marianne quinn
                  Participant

                    Hi Terra- My husband completed his 4th infusion of 10 mg ipi  on March 6. He has done well; his rash is more irritating now and his GI symptoms are a little more. He has been able to manage them pretty well. Be careful with your diet- we found he had to eliminate more foods as the trial progressed. He started off with a diet that eliminated popcorn, nuts, and seeds ( diverticulitis diet).  After the 3rd infusion, he had more problems and he eliminated milk, ice cream, sour cream etc. He does eat yogurt and cheese without problems. He is also only eating white bread, rice, etc. He found that taking calcium carbonate ( Tums) is very helpful. He has only needed immodium a couple of times. It almost seems like he has irritible bowel syndrome and it is more in the morning.

                     He takes Benadryl everyday and uses lotion on the rash. The most interesting thing is that his age spots ( melanin spots) have shrunk and faded remarkably.We found out that the age spots and melanoma share some antigens so we hope that is a good sign. He is stage 3 C and his labs have been normal throughout.

                    We had a scare this week. He had a CAT scan as part of the trial and it found a  2 cm spot on the top of his liver. A PET scan was ordered and showed possible mets. We were devastated after doing so well with the high dose ipi. He had a biopsy Wednesday and nothing looked  overtly  suspicious. We are waiting for the pathology results. I do not think the CAT scan would have been ordered based on clinical symptoms. We hope that the ipi was attacking something other than mets as it would eliminate him from the trial.

                    I am glad you got in the 3 mg arm as it is less worrisome. The sad thing is that we were just starting to relax after he got through the induction phase of 10mg. ipi. Living with melanoma is hard.

                    If anyone out there has had an experience similiar to my husband's, please post.  Thank you,.

                    Good luck Terra-

                    Marianne quinn
                    Participant

                      Hi Terra- My husband completed his 4th infusion of 10 mg ipi  on March 6. He has done well; his rash is more irritating now and his GI symptoms are a little more. He has been able to manage them pretty well. Be careful with your diet- we found he had to eliminate more foods as the trial progressed. He started off with a diet that eliminated popcorn, nuts, and seeds ( diverticulitis diet).  After the 3rd infusion, he had more problems and he eliminated milk, ice cream, sour cream etc. He does eat yogurt and cheese without problems. He is also only eating white bread, rice, etc. He found that taking calcium carbonate ( Tums) is very helpful. He has only needed immodium a couple of times. It almost seems like he has irritible bowel syndrome and it is more in the morning.

                       He takes Benadryl everyday and uses lotion on the rash. The most interesting thing is that his age spots ( melanin spots) have shrunk and faded remarkably.We found out that the age spots and melanoma share some antigens so we hope that is a good sign. He is stage 3 C and his labs have been normal throughout.

                      We had a scare this week. He had a CAT scan as part of the trial and it found a  2 cm spot on the top of his liver. A PET scan was ordered and showed possible mets. We were devastated after doing so well with the high dose ipi. He had a biopsy Wednesday and nothing looked  overtly  suspicious. We are waiting for the pathology results. I do not think the CAT scan would have been ordered based on clinical symptoms. We hope that the ipi was attacking something other than mets as it would eliminate him from the trial.

                      I am glad you got in the 3 mg arm as it is less worrisome. The sad thing is that we were just starting to relax after he got through the induction phase of 10mg. ipi. Living with melanoma is hard.

                      If anyone out there has had an experience similiar to my husband's, please post.  Thank you,.

                      Good luck Terra-

                      Marianne quinn
                      Participant

                        Hi Terra- My husband completed his 4th infusion of 10 mg ipi  on March 6. He has done well; his rash is more irritating now and his GI symptoms are a little more. He has been able to manage them pretty well. Be careful with your diet- we found he had to eliminate more foods as the trial progressed. He started off with a diet that eliminated popcorn, nuts, and seeds ( diverticulitis diet).  After the 3rd infusion, he had more problems and he eliminated milk, ice cream, sour cream etc. He does eat yogurt and cheese without problems. He is also only eating white bread, rice, etc. He found that taking calcium carbonate ( Tums) is very helpful. He has only needed immodium a couple of times. It almost seems like he has irritible bowel syndrome and it is more in the morning.

                         He takes Benadryl everyday and uses lotion on the rash. The most interesting thing is that his age spots ( melanin spots) have shrunk and faded remarkably.We found out that the age spots and melanoma share some antigens so we hope that is a good sign. He is stage 3 C and his labs have been normal throughout.

                        We had a scare this week. He had a CAT scan as part of the trial and it found a  2 cm spot on the top of his liver. A PET scan was ordered and showed possible mets. We were devastated after doing so well with the high dose ipi. He had a biopsy Wednesday and nothing looked  overtly  suspicious. We are waiting for the pathology results. I do not think the CAT scan would have been ordered based on clinical symptoms. We hope that the ipi was attacking something other than mets as it would eliminate him from the trial.

                        I am glad you got in the 3 mg arm as it is less worrisome. The sad thing is that we were just starting to relax after he got through the induction phase of 10mg. ipi. Living with melanoma is hard.

                        If anyone out there has had an experience similiar to my husband's, please post.  Thank you,.

                        Good luck Terra-

                      Gene_S
                      Participant

                        Hello Terra,

                        My husband was in the clinical trial of IPI with 10 mg/kg and GMCSF.  He did really good with a few side effects but we still managed to live life and take vacations and he was Stage IV.

                        Start with a positive attitude as this may help and hopefully no adverse side effects but be sure to keep your oncologist notified of any changes.  Good luck to you.

                        If you would like read more about my husband on his profile page.

                        Judy (loving wife of Gene Stage IV and now NED for almost a year and a half)

                        Gene_S
                        Participant

                          Hello Terra,

                          My husband was in the clinical trial of IPI with 10 mg/kg and GMCSF.  He did really good with a few side effects but we still managed to live life and take vacations and he was Stage IV.

                          Start with a positive attitude as this may help and hopefully no adverse side effects but be sure to keep your oncologist notified of any changes.  Good luck to you.

                          If you would like read more about my husband on his profile page.

                          Judy (loving wife of Gene Stage IV and now NED for almost a year and a half)

                          Rod
                          Participant

                            Terra, I have a very similar story to yours, stage 3 with 2 positive nodes and a modified ratical neck dissection,

                            I understand completely your feeling fine and struggling with taking a drug that will may make you feel not very well. 

                            I had some severe side effects from the Yervoy and treatment was stopped after the second infusion.

                            Would I do it again? You bet, really what options do you have?  

                            Good Luck, Rod

                             

                             

                            Rod
                            Participant

                              Terra, I have a very similar story to yours, stage 3 with 2 positive nodes and a modified ratical neck dissection,

                              I understand completely your feeling fine and struggling with taking a drug that will may make you feel not very well. 

                              I had some severe side effects from the Yervoy and treatment was stopped after the second infusion.

                              Would I do it again? You bet, really what options do you have?  

                              Good Luck, Rod

                               

                               

                              Rod
                              Participant

                                Terra, I have a very similar story to yours, stage 3 with 2 positive nodes and a modified ratical neck dissection,

                                I understand completely your feeling fine and struggling with taking a drug that will may make you feel not very well. 

                                I had some severe side effects from the Yervoy and treatment was stopped after the second infusion.

                                Would I do it again? You bet, really what options do you have?  

                                Good Luck, Rod

                                 

                                 

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