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Update and a New Plan

Forums General Melanoma Community Update and a New Plan

  • Post
    Julie in SoCal
    Participant
      Good Morning, friends!

      I just want to give you a quick update with where I’m at.

      On the Larry the Lung Cancer front: I am stable! Nothing’s growing! Everything’s shrinking — even the mystery Hilar Meat (So he’s now not much of a mystery and we’re calling him Larry). I didn’t have a PET scan this time, only a CT, but next PET, probably in March. We’re predicting (fingers and toes crossed) show that everything is dead. The targeted therapy has worked. Yea!

      On the Mel the Melanoma front: I had an MRI on my arm on Wed. Yes, that was 3.5 hours in a torpedo tube with crazy monkeys banging on the side. But it shows that I only have 3 blobs of mela-meat in my arm. This is very good news as we thought there might be more. Because there’s only 3 of them, I’ll have surgery next Tues to remove them. If there had been more, I’m not sure what we would have done. All I know is that waiting and seeing what they’ll do is no good. Better to be done with them and to whack them again when they come back.

      So this is the plan! Start the happy dancing!

      Shalom,
      Julie

    Viewing 12 reply threads
    • Replies
        Bubbles
        Participant
          Oh, Julie! Bless your heart! But, YAY!!!! Excellent way to put lung cancer on the run!!! I am ready for the March funeral – Nawlins style! Sorry for the melanoma spots, but glad they are localized and can still be removed! Git’em outta here!!! I hope the surgery and recuperation are not too difficult. You are just the most resilient, joyful and amazing human ever! Thanks for the update. When is Lil Chubbs taking her next trip? Much love, c
            Julie in SoCal
            Participant
              Oh yes, Larry, the lung cancer needs a second line parade! I love the idea!

              I am contemplating taking Lil’ Chubbs out to Death Valley NP (a 6-hour drive from here) over President’s weekend in Feb. But I’m really really tired and I’m having a hard time wrapping my mind (and body) around organizing life to do this. After Feb, the next Chubbs trip in April to Big Sur with a group of friends from my church. This should be great fun, and of course beautiful!!!

              Blessings,
              Julie

              Bubbles
              Participant
                I can only imagine how you are feeling, Julie. Just 3 months of platinum based chemo kicked my A$$ more than 2 1/2 years of nivo – so I bow down to the queen! Hopefully you will be up to a trip – but I know you will do what is best for you! Hope you have a good weekend. I will be holding you in my heart on Tuesday and look forward to more pics of Lil Chubb’s adventures whenever they occur! love, c
              JudiAU
              Participant
                Wonderful news Julie. Your body is taking charge.
                sj
                Participant
                  Wonderful news Julie. :)
                  jbronicki
                  Participant
                    Best news of the day Julie! Glad to hear that Larry and Mel finally got the memo that they are no longer welcome! Just so happy to hear this news. Good luck with the surgery! You need to get back on the road in your Airstream!
                    jbronicki
                    Participant
                      Best news of the day Julie! Glad to hear that Larry and Mel finally got the memo that they are no longer welcome! Just so happy to hear this news. Good luck with the surgery! You need to get back on the road in your Airstream!
                      Casitas1
                      Participant
                        Hey Julie, was in the tube for 2.5 hours at Tower St. Johns Wed. 8am. Saw Rock Star after at noon. Maybe we passed not knowing? Happy dancing with you on the stable and operable mel meat. Essner wacked on me several times and did a wonderful job!

                        Best, Paul

                          Julie in SoCal
                          Participant
                            NO WAY PAUL!!!! We just missed each other. I had the 3.5-hour session at St John in their funky, way out back, hidden under lock and key MRI on Monday. But I saw Drs O and E on Wed morning around 11. It’s highly likely we passed each other.

                            Yes, Essner’s awesome. He did the SNB and WLE with a skin graft for my primary. It’s healed so well people don’t even notice it unless I point it out (which I don’t because that’s weird).

                            Trust all is going well with you!
                            Blessings,
                            Julie

                            JudiAU
                            Participant
                              Dr. Richard Essner? He did my original WLE when he was at Cedars. It is in a very obvious place on my neck and i almost fainted when I first saw it. But it healed absolutely beautifully.
                              Julie in SoCal
                              Participant
                                One and the same! He’s amazing!

                                I too almost fainted when I saw the skin graft with the bolster stitched to my hand.
                                Julie

                                JudiAU
                                Participant
                                  I actually posted a yelp? I think review with before and after pictures but they took them down as too graphic.
                                  Julie in SoCal
                                  Participant
                                    One and the same! He’s amazing!

                                    I too almost fainted when I saw the skin graft with the bolster stitched to my hand.
                                    Julie

                                    Casitas1
                                    Participant
                                      Dang! I remember signing in at O’Day’s around 1120 am. If you were still waiting I probably glanced at you not knowing. Lol! Preliminary looks at scans are clear! Should hear from Christine later this afternoon with final results. Hoping you can rally up and make Death Valley trip. Best, Paul
                                      Julie in SoCal
                                      Participant
                                        So glad for all clear scans! This is what want to hear!

                                        Ok next time, we coordinate, Paul. We’ve missed each other way too often.
                                        Blessings
                                        Julie

                                      BrianP
                                      Participant
                                        That’s amazing news Julie! and I love your crazy monkey’s banging on the side analogy. I always wondered where the hell that noise was coming from and now I know.
                                        mandyjill
                                        Participant
                                          That all sounds like very good news Julie. So happy for you and just appreciate your positive attitude so much.
                                          Amanda
                                          sandyd77
                                          Participant
                                            Caregiver
                                            This is great news, Julie. Hope all continues in this positive direction for you. May I ask which drugs you had for targeted therapy? My husband is stage 4 and has had 10 Opdivo treatments. He has mets in liver (very small) and in lung as well as 2 recurrences on his back (original site). It appears that many of these are stabilizing and we hope will start to shrink. However, 2 in his left lung are still growing. They are going to schedule a biopsy to ensure they are melanoma and not lung cancer. If they are melanoma and we don’t get the response we are hoping for with Opdivo, his doctor will move him to targeted – he is BRAF positive. He has tolerated Opdivo pretty well. Have read mixed reviews on targeted therapy side effects. Thanks and very happy about your good news.

                                            Sandy D.

                                              Julie in SoCal
                                              Participant
                                                Hi Sandy,
                                                The targeted therapy I’m on is for Non-Small Cell Lung Cancer that is positive for an EGFR Mutation (exon 19). To my knowledge, it’s only used in NSCLC.

                                                Scheduling a biopsy to make sure the lung critters are mel is a good idea. Yes, it’s not common to have both primary lung cancer and melanoma at the same time, but we know it can and does happen. .And since your husband’s lung mets are still growing a biopsy sounds wise just to be sure.

                                                I was on Keytruda (same as Opdivo) and it took a long time for it to kick into a point where we could see it working. Maybe this is the same as your husband? Hope so.

                                                Blessings,
                                                Julie

                                                sandyd77
                                                Participant
                                                  Caregiver
                                                  Thanks so much for the reply Julie. Patience is not always easy but the rewards are worth it!

                                                  Best,

                                                  Sandy

                                                DoubleTT
                                                Participant
                                                  Hi been off line for a bit …Saw your news! very happy for you Julie….cheers yippee! Tracey
                                                  MelMel
                                                  Participant
                                                    Terrific news and must be such a great relief! Love Big Sur and Hearst Castle…..Enjoy!
                                                    Melanie
                                                    marta010
                                                    Participant
                                                      Julie – must be a relief to have a good plan on both fronts. Your attitude and perspective is so encouraging to the rest of us. Good luck with your upcoming procedure – hope it’s a piece of cake. Look forward to your travel blog!
                                                      Ann
                                                      lkb
                                                      Participant
                                                        Hooray for your good news and a new plan! Blobs, away with yas and leave our Julie alone!
                                                    Viewing 12 reply threads
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