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Its back!

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    • October 13, 2019 at 11:17 pm
    Suzi
    Participant
      It’s back! While going for my 3 year cancer free check up I got bad news. I had been in the hospital for asmatic bronchitis for 5 days then had my appointment with my oncologist, he saw a raised lymph node in my left deltoid and nodules in my lungs. Wanted to do another lung biopsy, had one a year age and was nothing. Was thinking it was from my bronchitis. I said how about a pet scan, we did it and he said they saw something in my brain maybe and needed an MRI. Well they saw 2 tumors 1 was 4cm and 1 2cm in my brain, 2 days later I was at university of Miami for consultation and they wouldn’t let me leave! Surgery the next day. This has all happened so fast! Tuesday I get gamma knife radiation and then Immunotherapy.
      I originally had melanoma on my shoulder and in lymph node in my armpit. So I am stage 4 now so scared for the future.
    Viewing 3 reply threads
    • Replies
        • October 13, 2019 at 11:32 pm
        Bubbles
        Participant
          Sorry you are dealing with this Suzi. Here is a primer I put together that covers current melanoma therapies including immunotherapy and radiation if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html It even includes a link to the abbreviation list I put together for you back in the day!!!

          We have learned that radiation combined with immunotherapy has better responses that either treatment alone, so your plan sounds perfect!! Here are a zillion reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy

          While melanoma certainly sucks great big green hairy stinky wizard balls – you have reason for hope. I was first diagnosed with Stage IIIb melanoma in 2003. Stage IV with lung and brain mets in 2010. But, after surgery to my lung, SRS to my brain met, and a 2 1/2 year Phase 1 nivolumab trial, I remain NED for melanoma with my last dose in June of 2013. Ask more questions as you have the need. I wish you my best.. Celeste

          • October 14, 2019 at 2:26 am
          doragsda
          Participant
            The information you’re finding on Google is obsolete. It cannot keep up with current treatments and success rates.

            Be sure you are seeing an experienced melanoma specialist before they do anything. A number of doctors are leaning away from surgery and gamma knife unless the brain mets are in a dangerous location, and are opting for going straight to immunotherapy.

            My wife’s story is similar to yours. December 2016 primary removed from left calf. Lymph nodes clear PET scan clear. Stage 2c. 6 months later I had to take her to the ER because she couldn’t walk on a Saturday evening. Two brain mets, one at 1 cm and one at 2.6 cm. Larger one in cerebellum was causing the balance issues and was shutting down flow of CSF, so they had to do a craniotomy on it on Tuesday morning. Couldn’t operate on smaller tumor but sent her a week later for gamma knife to it and to area around surgical site. Started immunotherapy a month later. She just finished two years of immunotherapy two weeks ago and is now NED. Things moved fast and she had the gamma knife before seeing the melanoma specialist, who indicated they probably wouldn’t have done that right away, but would have just started immunotherapy and held the gamma knife in reserve in case it was needed later. She did have some radiation necrosis from the gamma knife about 3 months later, but they got it under control with Avastin treatments. Looking back, we were in panic mode and just did what the local radiation oncologist was recommending in doing the gamma knife right away, but I wish we had waited a couple of weeks to consult with the melanoma specialist before taking that step – it might have been completely unnecessary as they are seeing good success with immunotherapy on brain mets.

            Good luck and best wishes to you.

              • October 14, 2019 at 2:29 am
              doragsda
              Participant
                Something I’ve learned over the last two years: doctors like to do what they know. I am not accusing them of conducting unnecessary procedures, but surgeons like to operate and radiation oncologists like to shoot radiation into things. That’s why it’s critical to have a melanoma specialist guiding the whole process. That doctor can choose from all the other specialties and apply the ones that are going to be appropriate for your circumstances.

                Dave

                • October 14, 2019 at 3:29 am
                Suzi
                Participant
                  I have one of the best melanoma oncologist in south Florida and had the best brain surgeon in the world at university of Miami, Dr Komotar. Luckily my tumors were on the surface, I am having the gamma knife only once to get rid of the microscopic cells leftover from surgery.
                  • October 14, 2019 at 11:51 am
                  Suzi
                  Participant
                    Did your wife have any side effects?
                    • October 14, 2019 at 2:34 pm
                    doragsda
                    Participant
                      Side effects:
                      To the surgery: no
                      To the gamma knife: one day of nausea the day after the procedure, probably stress related. Radiation necrosis about 3 months later at the resection site which was treated as you describe – perimeter was irradiated to clean up any remaining cells after surgical removal. Necrosis was treated with 4 doses of Avastin, which resolved it.
                      To the immunotherapy: during the combo she had dry mouth, itchy skin, and fatigue. After switching to nivo alone she would experience some stomach upset and diarrhea about two or three days after each infusion, usually lasting a couple of days. About a year in, it wiped out her thyroid, which was easy to treat with thyroxine replacement therapy.
                      Compared to many other people, she has been very fortunate in terms of side effects.
                      • October 14, 2019 at 7:36 pm
                      Suzi
                      Participant
                        Thanks
                        • October 16, 2019 at 12:47 am
                        Suzi
                        Participant
                          Today was awful! Gamma knife radiation.
                          So much pain when they took the cage off, have 4 holes and the radiation area hurts as much as surgery. Better after pain pill. They gave me morifine putting on the cage but not taking off. BP was 255/179!
                          • October 14, 2019 at 11:51 am
                          Suzi
                          Participant
                            Did your wife have any side effects?
                          • October 17, 2019 at 10:00 pm
                          MelanomaMike
                          Participant
                            Suzi! Sorry so late to read yer post! Iv been dealing with minor side effects of my new meds and have been offline. Im blown away at your new news! Wth? I mean, bottom line, we all know our stupid disease can pop back when we least expect it, i cant even imagine how you feel right now, im still fighting my battle since 2008 but to actually beat it then a reoccurrence? Not what we want….I hope your current battleplan knocks this out soon…
                              • October 18, 2019 at 12:35 pm
                              Suzi
                              Participant
                                Monday I have a needle biopsy in my lung and then start Immunotherapy. Hope its nothing, had one last year and it was clear. I have nodules, the one the biopsied last year is gone.
                              • October 19, 2019 at 7:30 pm
                              Sus69Riez
                              Participant
                                Susan C October 19, 2019 at 3:02 PM
                                I am on Braftovi (encorafenib) and Mektovi (binimetinib) had melanoma Situ stage on scalp 2006 and on face Situ stage in 2017. Then in March 2018 had swollen lymph node removed from neck which I was diagnosed stage 4 melanoma. Now have spot on lung which Biopsy showed was melanoma, now on the Mektovi and Braftovi. Scans show nothing elsewhere so feel blessed but so worried. Had side effects but was just given prednisone which is helping. Only been on 5 days straight and not sure when I will see results but probably will be 3 months from my last scan due to insurance not allowing more.
                                  • October 19, 2019 at 8:50 pm
                                  Suzi
                                  Participant
                                    Hope it helps, I’m on 25 more days of steroids, hate it.
                                    My head still hurts from the radiation.
                                    • October 19, 2019 at 9:04 pm
                                    casagrayson
                                    Participant
                                      I’m so sorry you’ve had so much pain from the radiation, Suzi. I don’t recall reading many stories like that. 🙁 I hope all goes well on Monday.
                                      • October 19, 2019 at 11:28 pm
                                      Suzi
                                      Participant
                                        I have 4 holes from the gamma knife cage, it still hurts and my radiation area is throbbing
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