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Experience with combination nivolumab/ipilimumab treatment?
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Experience with combination nivolumab/ipilimumab treatment?

› Forums › General Melanoma Community › Experience with combination nivolumab/ipilimumab treatment?

  • Post
    • June 12, 2015 at 2:41 pm
    LaurenE
    Participant

      My dad is now 4 years in since his diagnosis with melanoma, 1 year since we found mets, which were surgically resected. There are now more mets (of course) on his last scan, so we are taking the step for systemic treatment.

      The data for the combined nivolumab and ipilimumab is very compelling, however concerning for toxicity. We have an appointment to meet with an oncologist who is overseeing the expanded access to this and will likely get started in the next few weeks unless we find another option we want to try in the meantime.

      I was wondering if anyone had any experience (either yourself or a family member) of actually doing both of these drugs together. I would love to hear about any success stories, as well as the failures, however I am more wondering about the personal experience of having this treatment. I want to help support my dad as much as possible and father's day may be a good time to load him up with blankets, playlists, games, mints what have you for when he is having these infusions – do they give you chills or hot flashes? burn entering your veins? metallic taste in mouth? etc

      I would deeply appreciate any insight!

    Viewing 5 reply threads
    • Replies
        • June 12, 2015 at 4:34 pm
        dentholla
        Participant

          Lauren, I wish you and your family the best in your research.  My husband is entering this trial and his first treatment is 6/23 as a stage 3B although we question if he is really stage 3A.  Speedster is on this forum and is already part of that the same trial at Texas Oncology.  If you look up his profile he has documented a little of his journey.  Hope this helps and best wishes.

          • June 12, 2015 at 4:34 pm
          dentholla
          Participant

            Lauren, I wish you and your family the best in your research.  My husband is entering this trial and his first treatment is 6/23 as a stage 3B although we question if he is really stage 3A.  Speedster is on this forum and is already part of that the same trial at Texas Oncology.  If you look up his profile he has documented a little of his journey.  Hope this helps and best wishes.

            • June 12, 2015 at 4:34 pm
            dentholla
            Participant

              Lauren, I wish you and your family the best in your research.  My husband is entering this trial and his first treatment is 6/23 as a stage 3B although we question if he is really stage 3A.  Speedster is on this forum and is already part of that the same trial at Texas Oncology.  If you look up his profile he has documented a little of his journey.  Hope this helps and best wishes.

              • June 22, 2015 at 2:36 am
              AshleyS
              Participant

                Hi Lauren!

                I did not see your post until tonight. I was in this trial at MD Anderson. I made it through 3 of the 4 combo treatments. A week after my third infusion, I got very sick. I had fatigue, nausea, and diarrhea. I lost 20 pounds in four days. 

                HOWEVER….

                My scans, even without the fourth infusion, were awesome! I previously had 4 sub-q tumors. Gone. My liver tumors shrunk by 80-90%. 

                For about 5 days I was miserable. I couldn't get out of bed. I didn't hold my 3 month old for all that time and missed playing with my 2 year old. But hopefully these drugs will give me more time to do this in the future. I would do it again in a heartbeat. 

                Ashley

                  • June 22, 2015 at 12:38 pm
                  Want2help
                  Participant

                    I'm very happy about your positive results! And yes, hopefully you will have much more time with your children thanks to the drugs. Five days is not a long time even if it seems like that when you are ill. All the best!

                    • June 22, 2015 at 12:38 pm
                    Want2help
                    Participant

                      I'm very happy about your positive results! And yes, hopefully you will have much more time with your children thanks to the drugs. Five days is not a long time even if it seems like that when you are ill. All the best!

                      • June 22, 2015 at 12:38 pm
                      Want2help
                      Participant

                        I'm very happy about your positive results! And yes, hopefully you will have much more time with your children thanks to the drugs. Five days is not a long time even if it seems like that when you are ill. All the best!

                        • June 23, 2015 at 12:07 am
                        LaurenE
                        Participant

                          That's wonderful! I'm so glad for your improvement! 

                          Did you have any side effects before you got very sick? Like minor/baseline fatigue or nausea? Or reactions on the days of infusions? Or was it just that short, severe episode and that's it?

                          Thank you very much for your insight!

                          • June 23, 2015 at 12:07 am
                          LaurenE
                          Participant

                            That's wonderful! I'm so glad for your improvement! 

                            Did you have any side effects before you got very sick? Like minor/baseline fatigue or nausea? Or reactions on the days of infusions? Or was it just that short, severe episode and that's it?

                            Thank you very much for your insight!

                            • June 23, 2015 at 12:07 am
                            LaurenE
                            Participant

                              That's wonderful! I'm so glad for your improvement! 

                              Did you have any side effects before you got very sick? Like minor/baseline fatigue or nausea? Or reactions on the days of infusions? Or was it just that short, severe episode and that's it?

                              Thank you very much for your insight!

                            • June 22, 2015 at 2:36 am
                            AshleyS
                            Participant

                              Hi Lauren!

                              I did not see your post until tonight. I was in this trial at MD Anderson. I made it through 3 of the 4 combo treatments. A week after my third infusion, I got very sick. I had fatigue, nausea, and diarrhea. I lost 20 pounds in four days. 

                              HOWEVER….

                              My scans, even without the fourth infusion, were awesome! I previously had 4 sub-q tumors. Gone. My liver tumors shrunk by 80-90%. 

                              For about 5 days I was miserable. I couldn't get out of bed. I didn't hold my 3 month old for all that time and missed playing with my 2 year old. But hopefully these drugs will give me more time to do this in the future. I would do it again in a heartbeat. 

                              Ashley

                              • June 22, 2015 at 2:36 am
                              AshleyS
                              Participant

                                Hi Lauren!

                                I did not see your post until tonight. I was in this trial at MD Anderson. I made it through 3 of the 4 combo treatments. A week after my third infusion, I got very sick. I had fatigue, nausea, and diarrhea. I lost 20 pounds in four days. 

                                HOWEVER….

                                My scans, even without the fourth infusion, were awesome! I previously had 4 sub-q tumors. Gone. My liver tumors shrunk by 80-90%. 

                                For about 5 days I was miserable. I couldn't get out of bed. I didn't hold my 3 month old for all that time and missed playing with my 2 year old. But hopefully these drugs will give me more time to do this in the future. I would do it again in a heartbeat. 

                                Ashley

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