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a plan to get a plan… or what’s next?
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a plan to get a plan… or what’s next?

› Forums › General Melanoma Community › a plan to get a plan… or what’s next?

  • Post
    • October 22, 2019 at 10:43 pm
    Julie in SoCal
    Participant
      Good afternoon, Friends!

      This is just to give you a quick update on where I am and what’s happening: Tomorrow I’ll have a bronchoscopy and (hopefully) a biopsy of the hilar tumor. We need to find out if it is Mel or Larry the lung cancer so we know how best to treat these suckers. But either way, I currently have active NSCLC. and active melanoma — 8 more critters have popped up on my arm. They went from 1 small one to 8 visible ones pretty fast.

      Yesterday when I talked with my Rockstar Doc he said I was complicated and he would need to do some thinking. I figure he’s burning some brain cells on this one. I should know more next week Wed. I will let you know how things turn out.

      But on the fun side, I’ve finished painting (for now) the trailer:
      http://www.tnttt.com/gallery/image.php?album_id=5029&image_id=159766][img]http://www.tnttt.com/gallery/image.php?album_id=5029&image_id=159766&mode=thumbnail

      Ok, I guess I don’t know how to insert a link on this board…

      Shalom!
      Julie in SoCal

    Viewing 7 reply threads
    • Replies
        • October 23, 2019 at 12:42 am
        Bubbles
        Participant
          It’s never good to be the “interesting” patient, is it???? Still, I bet your doc will put a good plan in place for you!

          In better news, your trailer is SOOOOOOOOOOOOO cute!!! That’s awesome! Where you reckon to take her for a spin first?????

          Hang in there and let us know what’s up next! love, les

            • October 23, 2019 at 1:10 am
            Julie in SoCal
            Participant
              Hey les, yes! being an interesting patient is definitely living in interesting times! Never a good thing.

              I still have the electrical work to do on “Chubbs” (my housemate wanted to name her Bubbles, but I said there was only one 🙂 ). My dad and I will hook up the LED lights and install solar and a backup camera (I can’t see a thing behind it!). After that, the dog and I will probably take it out to a campground near the beach the first week in Dec. Check it out!

              Moro Campground Information

              Sure looks like you had a lot of love going on there in the last few weeks! Everyone looks so happy!

              Julie

              • October 23, 2019 at 2:50 am
              gopher38
              Participant
                Campground looks sweet. Everyone will be jealous of your digs.
                • October 26, 2019 at 12:59 am
                Bubbles
                Participant
                  The Moro Campground looks amazing, Julie!!! I want to go! HA!!! Yes, we have had some special times in our family over the past weeks. So incredibly grateful to have been around to see it! Will be sharing more party pics and pics of THE DRESS very soon! If you ever want to take Chubbs for a spin in the Smoky Mountains of TN (or just need some R&R without a camper!!!) you know who to call!!! Holding you in my heart, my dear. les
                • October 23, 2019 at 1:01 am
                Mark_DC
                Participant
                  Good luck Julie hope the rockstar comes up with something good maybe a new trial?
                  Did you have to stop the TVEC because of side effects or did you continue
                  Good luck with your bronchoscopy and hope a good plan next week too
                  Best wishes Mark
                    • October 23, 2019 at 4:09 am
                    Julie in SoCal
                    Participant
                      Hey Mark,

                      Unfortunately, I’m not a uniform enough mouse to be in a trial: two cancers. But I”m sure the Rock Star will have cooked up a plan.

                      I had really bad herpes up and down my arm after the TVEC injection. It was bad – I had to go to the ER for antivirals and antibiotics. Not pretty at all — but of course now I joke that the Nurse Practitioner gave me herpes. No more TVEC for me.

                      Blessings,
                      Julie

                      • October 24, 2019 at 1:54 am
                      Mark_DC
                      Participant
                        Maybe another intralesional then??? I knew you caught herpes but thought that was done and then you went back on TVEC
                        I was on TVEC for a year and with pembro it really made a difference
                        It was only after reading of your earlier experiences that I understood why the surgeon and nurse who were giving me the TVEC had to suit up and put on masks, then they were supposed to sterilize the area after – yet i was not supposed fo be taking any precautions
                        I thought it was all attenuated so there was no real risk – then I read your case!

                        Am thinking of you you have an amazing story and attitude and i pray rock star will rock for you
                        Mark

                        • October 24, 2019 at 5:22 pm
                        Julie in SoCal
                        Participant
                          Hi Mark,

                          Yes, it will all depend on the hilar mass; if it’s mel, we’ll do something a little more systematic than TVEC. If it’s not then I’d say intralesional is on the table.

                          Right now there are just so many if-then equations to keep track of. I’m so glad I have the Rock Star and his band.

                          Julie

                        • October 23, 2019 at 4:58 am
                        MelMel
                        Participant
                          It’s never a dull moment with one issue but having two and those buggers on your arm definitely keep you busy. Painting is a wonderful way to relax the mind, at least. I love your trailer and hibiscus set against the navy stripe! Reminds me of Hawaii.
                          Best wishes and a successful plan in your near future.
                          Melanie
                          • October 23, 2019 at 12:42 pm
                          SABKLYN
                          Participant
                            Great piece of artistry! Here’s to Rockstar’s upcoming ,asterpiece relative to your treatment! Best wishes as always
                            • October 23, 2019 at 12:43 pm
                            SABKLYN
                            Participant
                              Great piece of artistry! Here’s to Rockstar’s upcoming masterpiece relative to your treatment! Best wishes as always
                              • October 25, 2019 at 5:02 pm
                              MelanomaMike
                              Participant
                                Aaahh! I love your Love Trailer! Its shape looks like one half of a Heart! Haha..that would be so much fun going to diff places with it!
                                I just realized your current doctor use to (or still is) part of the Angeles Clinic? I dont remember if you know already, my new Dr. is Dr. Hamid at the Wilshire clinic (theres 2 folks) was, is he there or the Santa Monica location? Im just now realizing this haha…i went into your Bio to learn this….
                                I hope your Hilar area is nothing of concern, im with ya sis, its one thing after another isnt it? Prayers my way to you….
                                  • October 25, 2019 at 7:35 pm
                                  Julie in SoCal
                                  Participant
                                    Hey Mike,

                                    Yea I used to go to the Angeles Clinic. Loved that place–and the people there. my Doc has moved over to the John Wayne Cancer Center at St John’s and I’ve moved with him. He’s a good guy!

                                    I trust they’re treating you well and keeping you out of trouble!

                                    PS I like your check in idea!

                                    Julei

                                  • October 27, 2019 at 3:40 pm
                                  happyfeet123
                                  Participant
                                    Hi Julie
                                    I love you have a nickname for your Doc. That means you have a great personal and professional relationship. I believe the care even gets better when they have a positive relationship with the patient. I love love the trailer. How fun to travel around in. Have you given it a name. If not, we need too!
                                    Tammy
                                    • October 27, 2019 at 3:40 pm
                                    happyfeet123
                                    Participant
                                      Hi Julie
                                      I love you have a nickname for your Doc. That means you have a great personal and professional relationship. I believe the care even gets better when they have a positive relationship with the patient. I love love the trailer. How fun to travel around in. Have you given it a name. If not, we need too!
                                      Tammy
                                        • October 30, 2019 at 4:10 am
                                        Julie in SoCal
                                        Participant
                                          Hey Tammy!

                                          I’ve been with the Rock Star for quite a while. He’s a good guy who knows his stuff.

                                          The trailer’s name is Chubbs, the Happy Camper! My housemate wanted to name it Bubbles, but that would not do. So Chubbs it is!

                                          Tomorrow my Dad and I will start to work on the electronics. Should be fun.

                                          Julie

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