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Still N.E.D. – and an update on melanoma research

Forums General Melanoma Community Still N.E.D. – and an update on melanoma research

  • Post
    hbecker
    Participant

      We went to Johns Hopkins this week for my husband's annual check-up as part of a follow-up study after he participated in a GVAX melanoma vaccine trial. The scan reports all say "no evidence of metastatic disease," so we are celebrating 2 1/2 years post-WLE! This post is an edited version of the one I put on my blog to keep our family and friends up to date.

      Since there were no medical issues to discuss, we used some of our time with Dr. Lipson to get an update on melanoma research. He said the most prominent news is the ongoing developments in combination immune therapies, in which researchers are using antibodies that activate the immune system in various combinations. The research shows that the therapies are effective in a number of cancers, including kidney cancer, breast cancer, lung cancer and lymphoma as well as melanoma.

      He wasn’t talking about TIL therapy, which I’m pretty sure is likely to be very expensive if they are able to bring it to market – so expensive that sometimes I think of it as the monster that could eat all our money someday. Some researchers are working with therapies that activate the immune system without taking cells out of the body. We can hope that someday this will lead to effective therapies that can be commercialized without the prospect of either being available only to very wealthy patients or bankrupting the rest of us.

      Another positive thing about the immune therapy research is that some of the studies include patients with Stage 3 disease. Generally, reseasrchers don't want to study therapies in patients with completely resected melanomas because without a tumor to shrink, it’s hard to tell whether it’s working. As Dr. Lipson said, “in people who don’t have any evidence of disease, you wait … and you wait … and at some point you have to say, ‘Well, this did it.’ [Or not.] Even if you have two groups of people with a thousand patients in each group and you wait five years, it’s a long time for a trial.”

      Five years, trial or no, is a long time to wait. And as Dr. Lipson explained, the risk tapers off during that time. It’s not as though you are fresh out of surgery, and you know that the risk of recurrence is highest in the first five years, and then you hit the five-year mark and the risk gone. So what does it mean to be at the half-way point – two and a half years with no evidence of disease? Will it be different in June, with the next set of scans, at the three-year mark?

      I think not. Or if so, only to the extent that we’ve learned even better how to live with the uncertainty of being a melanoma survivor. Life goes on, and as long as it does we’ll continue to make the most of each day.

      It's a lesson I learned right here on the MPIP. Thanks so much to all of you who have helped!

      Hazel

       

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    • Replies
        jbronicki
        Participant

          Hazel that is absolutely wonderful news!  I follow your story as my husband has basically the same set of circumstances as your husband.  I also appreciate all that you do in terms of compiling and disseminating information regarding the current state of research/treatment options for melanoma.  So glad to hear your husband got another wonderful NED report.  Best wishes, jackie

          jbronicki
          Participant

            Hazel that is absolutely wonderful news!  I follow your story as my husband has basically the same set of circumstances as your husband.  I also appreciate all that you do in terms of compiling and disseminating information regarding the current state of research/treatment options for melanoma.  So glad to hear your husband got another wonderful NED report.  Best wishes, jackie

            jbronicki
            Participant

              Hazel that is absolutely wonderful news!  I follow your story as my husband has basically the same set of circumstances as your husband.  I also appreciate all that you do in terms of compiling and disseminating information regarding the current state of research/treatment options for melanoma.  So glad to hear your husband got another wonderful NED report.  Best wishes, jackie

              DZnDef
              Participant

                Hazel, I am always so happy to see yet another NED post!  Congratulations!  And yes, by all means take each precious day as the wonderful gift that it is each day that it arrives!  I plan to live that way for however many days I have left, whether its 10 or 10 million!

                Cheers!

                DZnDef
                Participant

                  Hazel, I am always so happy to see yet another NED post!  Congratulations!  And yes, by all means take each precious day as the wonderful gift that it is each day that it arrives!  I plan to live that way for however many days I have left, whether its 10 or 10 million!

                  Cheers!

                  DZnDef
                  Participant

                    Hazel, I am always so happy to see yet another NED post!  Congratulations!  And yes, by all means take each precious day as the wonderful gift that it is each day that it arrives!  I plan to live that way for however many days I have left, whether its 10 or 10 million!

                    Cheers!

                    _Paul_
                    Participant

                      Hi Hazel,

                      Nice to hear from you and what awesome news that your husband continues to be NED! Is Susan Sartorius still there? She and Dr. Lipson are both such awesome people!

                      – Paul.

                        hbecker
                        Participant

                          Paul, it's great to hear from you! Yes, Susan is still working at Hopkins – we saw her briefly on Tuesday. I agree with your assessment about both of our caretakers there.

                          Jackie and Maggie, thanks for your good wishes. Good to hear from you both, and wishing good health and happiness to you and yours.

                           

                          hbecker
                          Participant

                            Paul, it's great to hear from you! Yes, Susan is still working at Hopkins – we saw her briefly on Tuesday. I agree with your assessment about both of our caretakers there.

                            Jackie and Maggie, thanks for your good wishes. Good to hear from you both, and wishing good health and happiness to you and yours.

                             

                            hbecker
                            Participant

                              Paul, it's great to hear from you! Yes, Susan is still working at Hopkins – we saw her briefly on Tuesday. I agree with your assessment about both of our caretakers there.

                              Jackie and Maggie, thanks for your good wishes. Good to hear from you both, and wishing good health and happiness to you and yours.

                               

                            _Paul_
                            Participant

                              Hi Hazel,

                              Nice to hear from you and what awesome news that your husband continues to be NED! Is Susan Sartorius still there? She and Dr. Lipson are both such awesome people!

                              – Paul.

                              _Paul_
                              Participant

                                Hi Hazel,

                                Nice to hear from you and what awesome news that your husband continues to be NED! Is Susan Sartorius still there? She and Dr. Lipson are both such awesome people!

                                – Paul.

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