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Mixed results: Scans & Update
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Mixed results: Scans & Update

› Forums › General Melanoma Community › Mixed results: Scans & Update

  • Post
    • October 3, 2019 at 1:04 am
    Julie in SoCal
    Participant
      Hi there Friends!!!

      Last Monday was scan day; Tues I got the results (I know I’m spoiled!). The results are that the NSCLC in my neck lymph nodes is responding to the targeted chemo. This is very good news. Everything that was on the scans before is shrinking! Unfortunately, it also showed a suspicious uptake and mass in my hilar area under the breastbone between the pulmonary artery and aorta. It also showed uptake 2 places in my arm where melanoma lives and I can feel the bumps. So I have active NSCLC and melanoma, Oh, and I have pneumonia, too. When the antibiotics kick in I should feel much better!

      Yes, I will get a biopsy of the hilar thing. I’m not sure how they’ll do it, but until we know it’s name we can’t treat it. It’s in the same area as Larry the lung cancer, but it isn’t responding to the targeted treatment. Have I mutated already? It’s only been 3 months. Is it Mel? I knew he was a bastard, but boy what a location for him to land in– blood flow central! I have so many questions. I’ve sent an email to the Rock Star and his band, so I’m just waiting.

      At this point in time, I’m just rambling and trying to remember that life really is good. I just bought a teardrop trailer and am fixing it up for an epic Grand Teton NP and Yellowstone NP trip next June. I’m a photographer and have always dreamed about going on the road, finding beautiful places and setting up the most perfect shot! I’ve put it off because setting up the tent took too much out of me. But a trailer is just the ticket! Ok, you get it.

      So this is the news and where I’m at.

      Wishing you all peace,

      Julie in SoCal

    Viewing 6 reply threads
    • Replies
        • October 3, 2019 at 1:26 am
        jbronicki
        Participant
          Hi Julie,
          I was just thinking about you earlier this week and wondering how things were going. I’m so sorry you got mixed news but glad to hear that some is shrinking with the targeted chemo. You are absolutely one of my favorite people even though we have never met and it always hurts to hear that you aren’t 100%. Sorry about the pneumonia on top of everything else. I’m going to put all my thoughts into the Rock Star Doc and hopefully he can get Larry and Mel out of your life for good. I was just reading about the Hilar region, it is a challenging location, but I hope they get a biopsy so they can treat appropriately.

          Your idea for the trailer is perfect! I’ve always wanted a Airstream, my dream. I’m guessing your photography is beautiful too, just like your spirit and soul. I’m not sure if you saw the Secret Life of Walter Mitty where Sean Penn, playing a photographer for National Geographic, has a cover photo surprise. His perfect shot was of Walter Mitty! I’m sure you will get your perfect shot!

          Hugs,
          Jackie

          • October 3, 2019 at 2:00 am
          Bubbles
          Participant
            Oh, Julie! Literally EVERYTHING Jackie just said!!!! I almost posted a call out to you yesterday!!!! Geeze!!! So happy for the shrinkage. So ARRRRRGGGGHHHHH (I don’t have a permissable word!) for the other highlights! BUT! You are in good hands with your Rock Star, so I know he will come up with a good plan for all that! I just don’t want our Julie to have to endure it!!! Still, I know you will handle it with your incredible strength and grace. Someday Jackie and I will sit in a room with you and Jubes…..as she plays the violin will we admire your photos!!! Wouldn’t that be awesome???? Hugs and more hugs! Keep us posted and get better from the pneumonia super quick! I think I need to come make you some chicken soup! love you! les
              • October 4, 2019 at 12:58 am
              jbronicki
              Participant
                That is quite a visual Les! How much fun would that be, I can hear Jubes’ violin now! Julie, let’s make that an achievable goal, we need to see your photography 🙂 I have no talent to bring other than I play a pretty statistically mean game of texas hold’em poker!
                • October 4, 2019 at 4:28 pm
                MelanomaMike
                Participant
                  I beg to differ! You need to ad Medical Science to your list under Texas Holdem’!…your expertise has brought things to light for me and countless others sis!
                • October 3, 2019 at 10:59 am
                tedtell1
                Participant
                  Gosh Julie;
                  Wish the news was all good. Pneumonia is surely no fun too! The teardrop sounds so cool. Do you have a link online to your pix? I am sure many would love to see your work!
                  Sending prayers, blessings, good thoughts your way.
                  Ted
                  • October 3, 2019 at 4:20 pm
                  MelanomaMike
                  Participant
                    My SoCal Sistah! Im glad you wrote, i almost wrote you directly cuz i hadnt heard from ya lately (unless you snuck a post in the last week!?), ya, the Pneumonia sucks eggs, i hope your team knocks that out, dry that crap up!. Its still amazes me, but not uncommon, to have 2 different cancers! And atleast, like you know already, meds for Non Small Cell Lung Monsters are a bit more plentiful then if you had Mel in your lungs, im glad your stable for the most part & that your “doing” what Julie do! Haha…i love Woodworking, Animals, short walks in the city, (clogged Aorta cant handle it!) and fighting Melanoma! Those are my fav things to your photography 🙂 take care sis, i start that Clinical Trial (INCMGA00012 w/ Epacadostat) next week Oct 8th, cant wait to get back to the Juice Bar! My Mel has gone to long without a battle since June when they (Kaiser) stopped my Nivo….love ya sis!
                    • October 4, 2019 at 3:46 pm
                    BrianP
                    Participant
                      Thanks for the update Julie. Happy for the shrinkage and sad for the others. Love the travel plans! I’ll be thinking and praying for a successful treatment plan coming your way.

                      Brian

                      • October 5, 2019 at 2:21 am
                      Casitas1
                      Participant
                        Hi Julie, Glad to hear you are responding! Darn Massy uptake! Hoping Rock Star can put a plan in place. Your trip sounds wonderful! It will be nice to get of the zipper for a while… Can we post profile pictures whenever we want? Maybe we can post pictures through that one at a time? Fight on Mutant one!

                        Best, Paul

                        • October 7, 2019 at 4:05 am
                        lkb
                        Participant
                          Thanks for the update, Julie. Hooray for the shrinkages. Now if Larry and Mel would just take the Hilar Hound for a long (permanent) walk…Groovy travel plan for June! Hope you’re feeling better soon.
                          Lisa
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