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Bone Strengthening Agents following Immunotherapy Stage 4?
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Bone Strengthening Agents following Immunotherapy Stage 4?

› Forums › General Melanoma Community › Bone Strengthening Agents following Immunotherapy Stage 4?

  • Post
    • January 8, 2025 at 3:54 pm
    jjanekroll1
    Participant
      Hi!
      I am looking to hear from anyone that may have had a positive result from bone strengthening agents after finishing immunotherapy / treatment. I had brain surgery; radiation to the brain and lung; Keytruda 2 x (stopped because it increased the size of the tumor near my heart); doublet (Opdivo / Yervoy) x 3 and then Opdivo x 50 (a lot). For the past two years, my left side has been problematic – for the most part, it has been my ribs breaking and then sometimes a pneumothorax. Having three broken at once is problematic; I am very active and consistently reevaluate my diet, workout, PT, chiropractor input, acupuncture input, supplements etc etc. Now, it is more difficult for me to recover from illnesses and could be affecting my hip and knee. The reviews I have read are super negative for all bone drugs – just hoping to hear from someone that had a positive result from …well, anything at this point! I am 48 yrs old if that is helpful…
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    • Replies
        • January 8, 2025 at 4:59 pm
        Edwin
        Participant
          In March 2016 a PET scan showed melanoma in many of my bones. I received opdivo and yervoy 3 or 4 times then opdivo for 4 years. My melanoma seems to be gone. I received Zoledroic to strengthen my bones.
          “Zoledronic acid initiated 4/2016.After DEc 2016, frequency decreased to q 3 months. On hold since 10/2018.” I did not notice any side effects from Zoledronic.
            • January 8, 2025 at 5:24 pm
            jjanekroll1
            Participant
              Thank you, Edwin! May I ask how many infusions you had and how long you had treatment? Did they say you would have to restart at any point or that there would be long term consequences for which to be aware?
              • January 8, 2025 at 6:47 pm
              Edwin
              Participant
                From April 2016 to December 2016 I received Zometa once a month. From December 2016 to October 2018 I received Zometa every 3 months. I could not have dental work too close to a Zometa infusion. I do not recall my oncologist telling me that we might have to restart Zometa. I have never broken a bone. I am 81 years old now. Dr Gaba has been my oncologist since September 2015. I knew her from running before I needed an oncologist. She still runs marathons.
                • January 8, 2025 at 7:20 pm
                jjanekroll1
                Participant
                  Thank you again!
                  Were you able to simply stop the treatment? Were you able to see improvements with your bone mass during the time your were on it, and was there a specific reason that your dr chose that drug as opposed to others?
                  • January 8, 2025 at 8:03 pm
                  Edwin
                  Participant
                    When I no longer received Zometa, I didn’t notice any problem. Dr Gaba did not tell me why she chose Zometa. Healing of my bones could be due to immunotherapy or to Zometa. Perhaps it was due to the combination.
                  • January 8, 2025 at 8:07 pm
                  jjanekroll1
                  Participant
                    Throughout the process they did not measure the bone mass index?
                      • January 8, 2025 at 8:14 pm
                      Edwin
                      Participant
                        As far as I know my bone mass index was never measured.
                        • January 8, 2025 at 8:56 pm
                        jjanekroll1
                        Participant
                          And you were able to keep running during the treatments? I very much appreciate your info!!
                          • January 9, 2025 at 9:20 am
                          Edwin
                          Participant
                            Zometa did not interfere with my running. Opdivo and Yervoy immunotherapy did. In 2016 I didn’t run from April through August. I was able to bicycle some in June, July and August 2016.
                            • January 9, 2025 at 10:33 am
                            jjanekroll1
                            Participant
                              May I ask how it did interfere with your activity levels? Did you ever have pone pain / soreness?
                              Also did you have radiation at all during treatment?
                              • January 9, 2025 at 11:26 am
                              Edwin
                              Participant
                                I received radiation to a rib in September 2015. This made my rib pain less, but melanoma spread to many more bones. After melanoma disappeared from my bones, I received radiation to cancer in a lymph node in May 2018. Bone pain and lack of energy caused me to exercise less. I had bone pain for about 1 year. I took Oxycodone, when pain was most severe. I have not taken any pain medication in the past several years.
                              • January 9, 2025 at 2:44 am
                              JudiAU
                              Participant
                                Following. After many treatments and a a very heavy steroid and anti-seizure load I know it is coming.
                                  • January 9, 2025 at 10:34 am
                                  jjanekroll1
                                  Participant
                                    I hope not because this is harder mentally than treatment was 🙁 (for me!)
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