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starting ipi have questions re side effects

Forums General Melanoma Community starting ipi have questions re side effects

  • Post
    budspal
    Participant

      recently diagnosed stage 4 and looking for feedback re side effects from the ipi ….any info greatly appreciated. 

       

       

       

      recently diagnosed stage 4 and looking for feedback re side effects from the ipi ….any info greatly appreciated. 

       

       

       

    Viewing 9 reply threads
    • Replies
        Jim in Denver
        Participant

          There have been many posts about this subject here, so you could look back in the archives and also do some googling.  Common side effects include gastrointestinal problems, rash, fatigue, and vitiligo.  The list of potential side effets is long, and they are included in the Patient Consent Form.  Side effects can change over time, and become more or less severe.  They are generally considered positive signs that the drug is working and the the immune system is cranked up.  Most are controllable and will be monitored by your Doctor and Nurse.  Hope that helps – others on this board will also relate their own experiences.

          Best Wishes,

          Jim

          Jim in Denver
          Participant

            There have been many posts about this subject here, so you could look back in the archives and also do some googling.  Common side effects include gastrointestinal problems, rash, fatigue, and vitiligo.  The list of potential side effets is long, and they are included in the Patient Consent Form.  Side effects can change over time, and become more or less severe.  They are generally considered positive signs that the drug is working and the the immune system is cranked up.  Most are controllable and will be monitored by your Doctor and Nurse.  Hope that helps – others on this board will also relate their own experiences.

            Best Wishes,

            Jim

            swissie
            Participant

              Hi, I once made an overview of the side effects mentioned in the trial papers I had to sigh. I hope my translation is correct, it's from German (not my native language) to English (also not). The latest version was from March 2010. The figures might have changed since that time.

              • Nr of patients with no to some side effects was 75%, now it is 69%
              • Fatigue was 25%, now it is 30%
              • Diarrhoea was 25%, now it is 38%
              • Nausea was 20%, now it is 18%
              • Vomiting was not mentioned before, now it is 11%
              • Inflammation of the intestines was not mentioned before, now it is 10%
              • Rash 20%, now it is 35%
              • Itching was 18%m now it is 30%
              • Fever was 12%, now it is also 12 %
              • Colitis was not mentioned before, now it is 10%
              • Stomach pain was 8%, now it is 10%
              • Loss of appetite was 8%, now it's 10%
              • Headaches was 7%, now it is 8%

              Severe side effects were seen with 17% of the patients, now this increased to 22%. 
               
              If I read the rest of the explanation, it seems that people having hormonal gland problems (hope you understand what I mean) increased from 2% to 8% (3% severe problems).
               
              Also more people have side effects with the liver, which increased from 4% to 9% (6% severe)
               
              Hope this helps,
              Sabine
              swissie
              Participant

                Hi, I once made an overview of the side effects mentioned in the trial papers I had to sigh. I hope my translation is correct, it's from German (not my native language) to English (also not). The latest version was from March 2010. The figures might have changed since that time.

                • Nr of patients with no to some side effects was 75%, now it is 69%
                • Fatigue was 25%, now it is 30%
                • Diarrhoea was 25%, now it is 38%
                • Nausea was 20%, now it is 18%
                • Vomiting was not mentioned before, now it is 11%
                • Inflammation of the intestines was not mentioned before, now it is 10%
                • Rash 20%, now it is 35%
                • Itching was 18%m now it is 30%
                • Fever was 12%, now it is also 12 %
                • Colitis was not mentioned before, now it is 10%
                • Stomach pain was 8%, now it is 10%
                • Loss of appetite was 8%, now it's 10%
                • Headaches was 7%, now it is 8%

                Severe side effects were seen with 17% of the patients, now this increased to 22%. 
                 
                If I read the rest of the explanation, it seems that people having hormonal gland problems (hope you understand what I mean) increased from 2% to 8% (3% severe problems).
                 
                Also more people have side effects with the liver, which increased from 4% to 9% (6% severe)
                 
                Hope this helps,
                Sabine
                Sharyn
                Participant

                  Hi,

                  I've been on ipi since Sept 23, 2010, and I haven't experienced any side effects worth mentioning. From my perspective, it's been the easiest treatment I've had to date. The worst part is those few seconds when they're inserting the IV needle for the infusion, so that's nothing. But others have had severe side effects and have even had to stop treatment. So I guess it depends on the patient. Best of luck to you.

                  Hugs

                  Sharyn, Stage IV

                  Sharyn
                  Participant

                    Hi,

                    I've been on ipi since Sept 23, 2010, and I haven't experienced any side effects worth mentioning. From my perspective, it's been the easiest treatment I've had to date. The worst part is those few seconds when they're inserting the IV needle for the infusion, so that's nothing. But others have had severe side effects and have even had to stop treatment. So I guess it depends on the patient. Best of luck to you.

                    Hugs

                    Sharyn, Stage IV

                      LynnLuc
                      Participant

                        Sharyn, I noticed you did PV-10…how did that go ?

                        LynnLuc
                        Participant

                          Sharyn, I noticed you did PV-10…how did that go ?

                        mzeigler
                        Participant

                          My wife is due to have her third infusion of the ipi drug.  She has bone mets in her arm and vertebrate and has had pain at the sites of the melanoma.  I believe from reading and from the doctor's response that this could be and inflammatory response as the body's immune system is attacking the melanoma.  The pain has been treatable with pain medication, but is still uncomfortable.  Other side effects she has had is fome fatigue.  I'm hoping this is a positive sign that the drug is helping.

                          mzeigler
                          Participant

                            My wife is due to have her third infusion of the ipi drug.  She has bone mets in her arm and vertebrate and has had pain at the sites of the melanoma.  I believe from reading and from the doctor's response that this could be and inflammatory response as the body's immune system is attacking the melanoma.  The pain has been treatable with pain medication, but is still uncomfortable.  Other side effects she has had is fome fatigue.  I'm hoping this is a positive sign that the drug is helping.

                            Vermont_Donna
                            Participant

                              Hi,

                              I've had two rounds of ipi……no real serious side effects, just some minor: increased nausea (I had some anyways, now take Zofran and compazine as needed), increased fatigue (but not overwhelming, I did quit work so I can nap as needed). my tumors and sub q's on my leg (the only place where my melanoma has been found) are all quite inflamed, larger, redder, and more of them (my oncologist said he hopes that the inflammation has just made melanomas more noticeable, not that there are more). NO headaches, skin rashes, etc.

                              Good luck,

                              Vermont_Donna

                              stage 3a

                              Vermont_Donna
                              Participant

                                Hi,

                                I've had two rounds of ipi……no real serious side effects, just some minor: increased nausea (I had some anyways, now take Zofran and compazine as needed), increased fatigue (but not overwhelming, I did quit work so I can nap as needed). my tumors and sub q's on my leg (the only place where my melanoma has been found) are all quite inflamed, larger, redder, and more of them (my oncologist said he hopes that the inflammation has just made melanomas more noticeable, not that there are more). NO headaches, skin rashes, etc.

                                Good luck,

                                Vermont_Donna

                                stage 3a

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