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betsyl

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      betsyl
      Participant

        Sorry you're going through this. It definitely sucks.

        I recommend the book The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee. It was also made into a fantastic documentary by Ken Burns.

        betsyl
        Participant

          Maybe we'll get lucky and an accurate blood test for melanoma will become available.

          Apparently, people are working on this.

          https://labtestsonline.org/news/researchers-developing-blood-test-melanoma

          betsyl
          Participant

            Hi Ryan,

            I'm glad you caught yours early. When my husband was diagnosed with stage 4a, I freaked out and got my skin checked (twice) and our teenager's skin checked (twice), and I wear sunscreen all the time, and have finally FINALLY gotten my teenager to wear it everyday. My husband still doesn't. I guess he thinks the horse is already out of the barn.

            Anyway, the best you can do is go in for year checkups, protect yourself as much as possible, hope for the best, breathe, meditate, stay active, and/or pray, if that's your jam.

            Living with uncertainty is hard, but it DOES get easier the more you practice. I've had a lot of practice lately. 😉

            Best of luck!

            betsyl
            Participant

              With the bladder tumor, did you have blood in your urine?

              My husband has blood in his urine since Thursday. Spend Friday in the ER. Not sure yet what's causing it. 

              betsyl
              Participant

                Jennifer,

                That sucks, it really does.

                I think counseling can help if you find someone good. Maybe meditation if you're open to that. My husband is teaching himself to play piano, which I guess is a form of meditation. 

                Best wishes,

                Betsy

                 

                betsyl
                Participant

                  Thanks, everyone!

                  betsyl
                  Participant

                    So sad for what you're going through. I hope you have loved ones close by who can give you hugs and be with you during this time. Virtual hug from me, a fellow wife of patient.

                    betsyl
                    Participant

                      Perfect response 

                      betsyl
                      Participant

                        Thanks, Celeste, I appreciate your response. Unfortunately I've already had progression with Keytruda, and therefore discontinued this treatment. Due to other preexisting issues, my oncologist doesn't want to try ipi/nivo. 

                        Wishing you good luck with your fight!

                        betsyl
                        Participant

                          Mike:
                          This is a great tip. I'm going to mention it to my husband. He's about to start trying CBD oil, too. Fingers crossed he finds some relief.

                          Jenn:
                          Tip for your plantar fasciitis…Look for a physical therapist or chiropractor who uses the Graston technique. It cured my plantar fasciitis. Since you're in the Bay Area, I can give you the name of my chiro. She's amazing.

                          Rikke Johansen, Health Logic in Redwood City

                          Betsy

                           

                           

                          betsyl
                          Participant

                            That's so great!

                            betsyl
                            Participant

                              Also, not yet reached makes it sound like the participants are going to die, but they just haven't died yet. When the fact is if you get a response (even if partial) and you make it to 3+ years, the survival curve "flattens," (which also sounds vaguely negative!) but actually means you're probably going to stay alive and eventually die much later from some other cause. In other words, you're more or less cured.

                              Do I have this right??

                              betsyl
                              Participant

                                "Overall survival not reached" sounds so negative, but it's actually positive. I bet a lot of patients get scared when they see this phrase. I know I did!

                                betsyl
                                Participant

                                  Thank you! 

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