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Time for a plan B Mel is back
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Time for a plan B Mel is back

› Forums › General Melanoma Community › Time for a plan B Mel is back

  • Post
    • January 13, 2019 at 11:49 pm
    iskitwo
    Participant

      I haven't posted in a while but have been checking in occasional to see how my fellow Mel peeps are doing. Mostly just living life. It looks like after 8 months on opdivo (the last 4 of those being NED) melanoma has returned. My last 2  scans showed a  tumor that has gone from  2cm to 2.9cm   on my pelvic bone. Oncologist is recommending radiation of the area and continuing the opdivo treatments. If that doesn't knock it out then going to yervoy/opdivo. What should I expect with the radiation to the bone? long term side affects? I am sure that the radiologist oncologist will go over all this but just wondering if maybe someone who had first hand experience.
      I am BRAF + but the doctor really acted like he wanted to wait and use that only if these things did knock it out. Wonder what other treatment option are out there?? 

      Thanks,

      Missy

       

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    • Replies
        • January 13, 2019 at 11:52 pm
        iskitwo
        Participant

          sorry didn't mean to post as Anonymous….ugh. 

          • January 14, 2019 at 1:22 am
          Edwin
          Participant

            I had radiation to melanoma in a rib for 5 consecutive days in September 2015.   I felt fatigue for the rest of each radiation day.   I felt less pain in that rib after the radiation was done.   However, the cancer spread to many more bones.   My bone cancer eventually disappeared, after Yervoy/Opdivo immunotherapy.

            This is from my December 27, 2018 PET/CT scan:
            "Skeletal: No areas of abnormal uptake are seen. There is some sclerosis in the posterior right ninth rib from previous treatment of the metastatic focus."

              • January 14, 2019 at 2:57 am
              iskitwo
              Participant

                Thanks for your response. Those are great scan results. I know it might be a long road ahead but I am praying for those same great results one day!!

                • January 14, 2019 at 6:31 pm
                Edwin
                Participant

                  Your receiving radiation and immunotherapy together is good.   I began Keytruda immunotherapy 2 months after the radiation to my rib.   The radiation failed and Keytruda failed.   They might have worked better together.   Yervoy/Opdivo immunotherapy saved my life, but gave me very severe side effects.  I hope radiation and Opdivo immunotherapy stop your melanoma and you don’t need to proceed to Yervoy/Opdivo immunotherapy.  In March 2016 I expected to die in 2016.  I now have a stable melanoma tumor under my left jaw;  I might live several years.

                • January 14, 2019 at 5:02 am
                Coragirl
                Participant

                  Missy I am so sorry to read this, but you still have options. Also low tumor burden. I think your Doctor is right to start with radiation first. Allyn didn't have any side effects that were too bothersom. When you meet with the radiation oncologist they will explain all of the things to expect. I am praying for you and your family always.

                  • January 14, 2019 at 2:52 pm
                  Bubbles
                  Participant

                    Sorry you are dealing with this.  These reports do not necessarily address side effects, but they do give hope regarding increased effectiveness when immunotherapy and radiation are combined, if you are interested:

                    https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy 

                    Hang in there.  I wish you my best.  Celeste

                    • January 14, 2019 at 6:43 pm
                    Brian j
                    Participant

                      Missy  My personal experience was with a 3.4cm lesion in my sacrum discovered in April 2017, both MDA and Mayo suggested Radiation and Keytruda(at number 30 so far). My oncolologist at MDA added denosumab (Xgeva) for bone strength and to reduce chance of fractures. I had zero side effects to radiation therapy, that may have been due to the hypofractionated method used. The very next PET Scan showed dramatically reduced activity at this lesion and continued good scans since. If you decide to go with the radiation I hope you receive the same results. Best Wishes.

                      • January 15, 2019 at 11:15 pm
                      Summer S.
                      Participant

                        Targeted therapy usually works quick to reduce tumor burden, however, unlike immunotherapy it doesnot have long term effect. Few super lucky people who use it get NED, and the rest get their tumors growing back – sometimes more aggressive- when they stop it. 

                        Do not get me wrong, it is still a great option for reducing tumor burden and it saves some lives for years.

                        However, you have better chances with immunotherapy because its effect lasts longer even after you stop treatment and it recorded significantly more full recovery cases. 

                         

                        And BD I have no previous experience with radio therapy

                         

                        Good Luck 

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