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How to live with this day to day – started ipi but new lump
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How to live with this day to day – started ipi but new lump

› Forums › General Melanoma Community › How to live with this day to day – started ipi but new lump

  • Post
    • January 9, 2015 at 12:50 pm
    Rose2014
    Participant

      My husband had great n.e.d. scans after dabra/mek treatment for a recurrence at the surgical site of melanoma. Then a serious side effect caused him to have to stop using it an he switched to IPI.  Now three weeks after first IPI treatment, there is a lump growing again. They said we have to keep using IPI and wait to see if the lump changes.  Cancer sites state things like people with local recurrences like this after surgery have lower survival rates. How the heck is anybody expected to live with this stress? It's driving us nuts.  We don't know if we have hope or not. Thanks for listening. Just venting.

      Rose

    Viewing 5 reply threads
    • Replies
        • January 9, 2015 at 2:08 pm
        _Paul_
        Participant

          Hi Rose,

          This sounds similar to me. I had two recurrences at the original site and have had a total of 3 surgeries on my scalp. After the last recurrence I had a PET/CT and this time it came back with mets in lungs, liver and gallbladder. That's when I started IPI. The thing with ipi is that it is slow acting. So I had to wait an additional 4 months for a scan to see if it was working. And it actually seems to be! So there is definitely hope and lots of it. And even if the IPI doesn't work, then there are the anti-PD-1 drugs which are showing even better results, but one must try the IPI first.

          Best – Paul.

          • January 9, 2015 at 2:08 pm
          _Paul_
          Participant

            Hi Rose,

            This sounds similar to me. I had two recurrences at the original site and have had a total of 3 surgeries on my scalp. After the last recurrence I had a PET/CT and this time it came back with mets in lungs, liver and gallbladder. That's when I started IPI. The thing with ipi is that it is slow acting. So I had to wait an additional 4 months for a scan to see if it was working. And it actually seems to be! So there is definitely hope and lots of it. And even if the IPI doesn't work, then there are the anti-PD-1 drugs which are showing even better results, but one must try the IPI first.

            Best – Paul.

            • January 9, 2015 at 2:08 pm
            _Paul_
            Participant

              Hi Rose,

              This sounds similar to me. I had two recurrences at the original site and have had a total of 3 surgeries on my scalp. After the last recurrence I had a PET/CT and this time it came back with mets in lungs, liver and gallbladder. That's when I started IPI. The thing with ipi is that it is slow acting. So I had to wait an additional 4 months for a scan to see if it was working. And it actually seems to be! So there is definitely hope and lots of it. And even if the IPI doesn't work, then there are the anti-PD-1 drugs which are showing even better results, but one must try the IPI first.

              Best – Paul.

                • January 9, 2015 at 2:24 pm
                Rose2014
                Participant

                  Thanks Paul

                  • January 9, 2015 at 2:24 pm
                  Rose2014
                  Participant

                    Thanks Paul

                    • January 9, 2015 at 2:24 pm
                    Rose2014
                    Participant

                      Thanks Paul

                    • January 9, 2015 at 5:13 pm
                    arthurjedi007
                    Participant

                      One thing I quit doing was read survival statistics. Most are so out of date anyway. After all pd1 has only been around fourish years and Celeste is a perfect example of being one of the first on it and Ned.

                      what I've learned is to not expect one treatment to be the silver bullet and life goes back to normal. Just somehow learn to enjoy each day as best we can. Have a plan b or multiple plan b's and try to relax.

                      not easy to do.

                      Artie

                        • January 9, 2015 at 7:26 pm
                        Sheepsandcows
                        Participant

                          well said.

                          • January 9, 2015 at 7:26 pm
                          Sheepsandcows
                          Participant

                            well said.

                            • January 9, 2015 at 7:26 pm
                            Sheepsandcows
                            Participant

                              well said.

                              • January 9, 2015 at 8:08 pm
                              democat
                              Participant

                                I wonder when they'll get around to revising the survival statistics. I agree that it's best to ignore them.  I take strength from the stories of all the survivors on this board.

                                • January 9, 2015 at 8:08 pm
                                democat
                                Participant

                                  I wonder when they'll get around to revising the survival statistics. I agree that it's best to ignore them.  I take strength from the stories of all the survivors on this board.

                                  • January 10, 2015 at 4:48 am
                                  Marianne quinn
                                  Participant

                                    It is fairly common for patients on ipi to have what appears to be progression. Often, lymph nodes swell and sometimes even more show up. Some folks think when that  happens it means the ipi is creating a strong immune response. So, be positive and go with that thought. Remember that ipi can take time to show tumor shrinkage. Good luck!

                                    • January 10, 2015 at 4:48 am
                                    Marianne quinn
                                    Participant

                                      It is fairly common for patients on ipi to have what appears to be progression. Often, lymph nodes swell and sometimes even more show up. Some folks think when that  happens it means the ipi is creating a strong immune response. So, be positive and go with that thought. Remember that ipi can take time to show tumor shrinkage. Good luck!

                                      • January 11, 2015 at 6:55 pm
                                      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??

                                        • January 11, 2015 at 6:55 pm
                                        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??

                                          • January 11, 2015 at 6:55 pm
                                          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??

                                            • January 10, 2015 at 4:48 am
                                            Marianne quinn
                                            Participant

                                              It is fairly common for patients on ipi to have what appears to be progression. Often, lymph nodes swell and sometimes even more show up. Some folks think when that  happens it means the ipi is creating a strong immune response. So, be positive and go with that thought. Remember that ipi can take time to show tumor shrinkage. Good luck!

                                              • January 9, 2015 at 8:08 pm
                                              democat
                                              Participant

                                                I wonder when they'll get around to revising the survival statistics. I agree that it's best to ignore them.  I take strength from the stories of all the survivors on this board.

                                              • January 9, 2015 at 5:13 pm
                                              arthurjedi007
                                              Participant

                                                One thing I quit doing was read survival statistics. Most are so out of date anyway. After all pd1 has only been around fourish years and Celeste is a perfect example of being one of the first on it and Ned.

                                                what I've learned is to not expect one treatment to be the silver bullet and life goes back to normal. Just somehow learn to enjoy each day as best we can. Have a plan b or multiple plan b's and try to relax.

                                                not easy to do.

                                                Artie

                                                • January 9, 2015 at 5:13 pm
                                                arthurjedi007
                                                Participant

                                                  One thing I quit doing was read survival statistics. Most are so out of date anyway. After all pd1 has only been around fourish years and Celeste is a perfect example of being one of the first on it and Ned.

                                                  what I've learned is to not expect one treatment to be the silver bullet and life goes back to normal. Just somehow learn to enjoy each day as best we can. Have a plan b or multiple plan b's and try to relax.

                                                  not easy to do.

                                                  Artie

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