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Rose2014

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      Rose2014
      Participant

        Thanks for the info.  When my husband first took dabrafenib with Mekinist, he had 6 weeks with no side effects. then the fevers started and he spent three days in the hospital. when he got out, they had him start dabra without mekinist and with prednisone. this worked for a couple weeks. then he got fevers again. We upped the prednisone a little, but the fevers kept coming back.  Then he got eye inflammation and had to stop dabra for at least six weeks. the Dabra had gotten rid of the melinoma tumor to the point that his next scans were ned.  However, He is now on just started ipi and in the meantime a small area of supposed "scar tissue" has grown and they assume it is probably melanoma again. They had him try dabra again but within 36 hrs he was getting chills and fevers again and eye inflammation. They dont want prednisone when he is on ipi

        Rose2014
        Participant

          Thanks for the info.  When my husband first took dabrafenib with Mekinist, he had 6 weeks with no side effects. then the fevers started and he spent three days in the hospital. when he got out, they had him start dabra without mekinist and with prednisone. this worked for a couple weeks. then he got fevers again. We upped the prednisone a little, but the fevers kept coming back.  Then he got eye inflammation and had to stop dabra for at least six weeks. the Dabra had gotten rid of the melinoma tumor to the point that his next scans were ned.  However, He is now on just started ipi and in the meantime a small area of supposed "scar tissue" has grown and they assume it is probably melanoma again. They had him try dabra again but within 36 hrs he was getting chills and fevers again and eye inflammation. They dont want prednisone when he is on ipi

          Rose2014
          Participant

            Thanks for the info.  When my husband first took dabrafenib with Mekinist, he had 6 weeks with no side effects. then the fevers started and he spent three days in the hospital. when he got out, they had him start dabra without mekinist and with prednisone. this worked for a couple weeks. then he got fevers again. We upped the prednisone a little, but the fevers kept coming back.  Then he got eye inflammation and had to stop dabra for at least six weeks. the Dabra had gotten rid of the melinoma tumor to the point that his next scans were ned.  However, He is now on just started ipi and in the meantime a small area of supposed "scar tissue" has grown and they assume it is probably melanoma again. They had him try dabra again but within 36 hrs he was getting chills and fevers again and eye inflammation. They dont want prednisone when he is on ipi

            Rose2014
            Participant

              wow, amazing that you didn't even realize you had a fever at 103. my husband gets the chills at only 99 degrees. they don't let him keep taking it when he gets fevers because his fevers escelate. thanks for the info.

              Rose2014
              Participant

                wow, amazing that you didn't even realize you had a fever at 103. my husband gets the chills at only 99 degrees. they don't let him keep taking it when he gets fevers because his fevers escelate. thanks for the info.

                Rose2014
                Participant

                  wow, amazing that you didn't even realize you had a fever at 103. my husband gets the chills at only 99 degrees. they don't let him keep taking it when he gets fevers because his fevers escelate. thanks for the info.

                  Rose2014
                  Participant

                    Thanks for the support.  It's all so confusing. My husband said the dr said it felt like more melanoma on the surgical site (like happened once before). Thinking he may have not remembered all of the conversation due to stress, I called to clarify and  the nurse read the notes of the meeting and said they were leaning towards thinking it could maybe just be inflammation, so wait and watch over the next couple weeks and if it got worse and was melanoma then they would consider more surgery and switching from ipi to ipi/anti-pd1 combo.   When I feel the lump it does feel exactly like the last recurrence and is in the same place, so it is hard for me to believe it is just inflammation. His scans were completely clear a month ago and now this. He had his second ipi treatment a few days ago. It can't be a lymph node because they took them all out.  It is 1 1/2" x 1" right now, and I dread how we are going to watch it grow again over the week. I just don't see how he could go from clear scan to a 1" lump in the same spot and it be just inflammation. Is it possible that just plain scar tissue can get inflammation??

                    Rose2014
                    Participant

                      Thanks for the support.  It's all so confusing. My husband said the dr said it felt like more melanoma on the surgical site (like happened once before). Thinking he may have not remembered all of the conversation due to stress, I called to clarify and  the nurse read the notes of the meeting and said they were leaning towards thinking it could maybe just be inflammation, so wait and watch over the next couple weeks and if it got worse and was melanoma then they would consider more surgery and switching from ipi to ipi/anti-pd1 combo.   When I feel the lump it does feel exactly like the last recurrence and is in the same place, so it is hard for me to believe it is just inflammation. His scans were completely clear a month ago and now this. He had his second ipi treatment a few days ago. It can't be a lymph node because they took them all out.  It is 1 1/2" x 1" right now, and I dread how we are going to watch it grow again over the week. I just don't see how he could go from clear scan to a 1" lump in the same spot and it be just inflammation. Is it possible that just plain scar tissue can get inflammation??

                      Rose2014
                      Participant

                        Thanks for the support.  It's all so confusing. My husband said the dr said it felt like more melanoma on the surgical site (like happened once before). Thinking he may have not remembered all of the conversation due to stress, I called to clarify and  the nurse read the notes of the meeting and said they were leaning towards thinking it could maybe just be inflammation, so wait and watch over the next couple weeks and if it got worse and was melanoma then they would consider more surgery and switching from ipi to ipi/anti-pd1 combo.   When I feel the lump it does feel exactly like the last recurrence and is in the same place, so it is hard for me to believe it is just inflammation. His scans were completely clear a month ago and now this. He had his second ipi treatment a few days ago. It can't be a lymph node because they took them all out.  It is 1 1/2" x 1" right now, and I dread how we are going to watch it grow again over the week. I just don't see how he could go from clear scan to a 1" lump in the same spot and it be just inflammation. Is it possible that just plain scar tissue can get inflammation??

                        Rose2014
                        Participant

                          Thanks Paul

                          Rose2014
                          Participant

                            Thanks Paul

                            Rose2014
                            Participant

                              Thanks Paul

                              Rose2014
                              Participant

                                Thanks for the info. interesting that no matter what they tell you to expect we seem to always have to expect the unexpected. We called dr office – they said his stomach flu-like feelings yesterday (and today) cannot be related to the treatment because it's too soon. Maybe it was from something he ate, but basically what you described (plus diarrhea today) seems to be how he felt yesterday.

                                Thanks for your reply.

                                Rose2014
                                Participant

                                  Thanks for the info. interesting that no matter what they tell you to expect we seem to always have to expect the unexpected. We called dr office – they said his stomach flu-like feelings yesterday (and today) cannot be related to the treatment because it's too soon. Maybe it was from something he ate, but basically what you described (plus diarrhea today) seems to be how he felt yesterday.

                                  Thanks for your reply.

                                  Rose2014
                                  Participant

                                    Thanks for the info. interesting that no matter what they tell you to expect we seem to always have to expect the unexpected. We called dr office – they said his stomach flu-like feelings yesterday (and today) cannot be related to the treatment because it's too soon. Maybe it was from something he ate, but basically what you described (plus diarrhea today) seems to be how he felt yesterday.

                                    Thanks for your reply.

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