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Simple question or not

Forums General Melanoma Community Simple question or not

  • Post
    Daisy2018
    Participant
      Hello friends,
      It’s been a while since I posted last time. Need your advise guys and girls!
      I have started optivo/yervoy beginning of January for stage IV. Mets in brain were treated with SRS. Painful Mets in rib cage were treated successfully with radiation. I received 2 infusions so far.
      Lots of pain in my pelvic bones and right shoulder recently. LDH slightly up from 240 to 300. Can barely walk or dress up because of pain in bones. Taking lots of pain meds if I want at least to walk. I try to walk at least a mile daily.
      My oncologist wants to do CAT scan now. The rational is to see disease progression and maybe switch right away to something else. We already failed Keytruda. BRAf/Mek inhibitors stopped working after 8 months. There are some other targeted therapy treatment options I suppose and there are some other immunotherapy options available, not many. Optivo and Yervoy are big guns and maybe we should give them more time to work?
      The pain I m having is not a good sign in terms of positive response to treatment, however again maybe it’s too early to freak out and stop it? The other second opinion oncologist who I liked a lot offers to still wait until we have 4 infusions and not do the scan yet.

      Worried if with waiting with are sinking the ship?
      Should we give Optivo/Yervoy more time to do its job while treating pain with palliative radiation? Should we do CAT and possibly change medication if scan doesn’t look good?

    Viewing 10 reply threads
    • Replies
        JudiAU
        Participant
          If you are being offered imaging and have pain, I would get the scans. Information should always be desirable. Understanding pain is important. Immunotherapy takes time time to work of course but unless there is some pressing reason like insurance not paying for it I don’t see why not.
          Mark_DC
          Participant
            Hi Daisy

            Am sorry for the pain you are suffering and also your worry.
            I am not an expert, but I agree w Judi’s quick response. You are in lots of pain and the oncologist wants to look – so why not? Maybe it is nothing and that would be good to know. Maybe its a problem but not bad enough so oncologist then decides to continue treatment and then can check at your following scan. Or the CT indicates need for a change in treatment (and seems your oncologist has options, or is looking for options – so this would justify the scan). I know it’s rough but why not do it?

            Best wishes Mark

            Daisy2018
            Participant
              Thanks for your responses. Yes, the pain part sucks. Every morning I wake up and it is still there. Usually when we are sick we get better after a while hopefully. The pain is there every morning and lasts all day I just keep loading up on morphine, oxy, gabapentin,naproxen all day and night. The radiation will help. The systemic treatment still needs to take place otherwise I am screwed. I don’t think there are many options after failed Keytruda, Braftovi/Mektovi and if Ipi/nivo we will quit after a month.

              He wants a CAT scan now. In a month or about 5 weeks I would have to do PET anyway. The reason I m reluctant to do the scan now as opposing to in a 5 weeks after 4 infusions completed is immunotherapy takes time to work. I m worried we will have more questions than answers at this point. The PET need to take place in 5 weeks anyway.
              There is a reason why they usually do scan after 4 infusions. I m really scared to get a faulty premature information and potentially stop the treatment that still can work and save my life.
              Does it make sense? Opinions please….

              The other second opinion oncologist is from biggest medical center in a city. She does research and clinical trials. My oncologist is from smaller local place. I want to give it more time, scared to mess up potentially life saving treatment.

              Edwin
              Participant
                In your place I would consider completing all 4 ipi/nivo immunotherapy infusions, whatever the CAT scan shows.

                I also had melanoma in my bones. I had significant pain for several months. I began Keytruda immunotherapy in November 2015. Walking became very painful in February 2016. A March 2016 PET scan showed that Keytruda treatments had failed. I began ipi/nivo immunotherapy in April 2016 and had my next PET scan in August 2016. My bone pain disappeared around the time I received my 4th infusion of ipi/nivo.

                Daisy2018
                Participant
                  Thank you Edwin.
                  I m surprised you didn’t do palliative radiation?! Why suffer? Bone Mets are very painful.

                  Yes, that’s the plan. I agree with you as well as Dr. Weber said today to do 4 infusions before doing any scans.

                    Edwin
                    Participant
                      In September 2015 I had radiation to a rib with melanoma. At the time that rib was my only bone with evidence of cancer. I had less pain in that rib after the radiation. However, melanoma spread to several more of my bones by March 2016.
                      Edwin
                      Participant
                        You had mets in your rib cage and have pain in your pelvic bones and right shoulder. My March 2016 PET scan showed melanoma in my right shoulder, some ribs, some vertebrae, pelvis and both femurs. My cancer was too widespread to consider palliative radiation. For you a CAT scan might help determine whether to do palliative radiation and where to direct it.
                      Daisy2018
                      Participant
                        Sounds pretty similar. It did start with rib pain, couple brain Mets, other big bones Mets pain. Bones Mets hurts like motherfucker.. ouch!!!
                        It took them a while to confirm these bone lesions. I had to go to a bigger hospital system.

                        I can’t even imagine being in pain for all this time until treatment finally kicked in.
                        You must be tough guy.
                        How are you doing disease wise now?

                          Edwin
                          Participant
                            I have been NED for over 2 years.
                          Daisy2018
                          Participant
                            Lol. I had almost same scan results. I think the difference is which lesions cause pain. I lighted up like a Christmas tree this time.
                            They will just go after ones which hurt.
                            Daisy2018
                            Participant
                              NED for two years?! OMG!! Magic words!
                              Thank you so much for responding. That’s what this board is about. The support is invaluable.

                              Anything else you may share about your experience? Did you do Nivo for a while after?! Any major toxicities? How’s your overall health if you don’t mind me asking? Are you back to work?

                                Edwin
                                Participant
                                  My 4th and last infusion of ipi/nivo was in July 2016. I received infusions of nivo from August 2016 until May 2020. I was tired for a couple days after an infusion of nivo. My 1st infusion of ipi/nivo gave me very bad diarrhea. I lost too much weight and had to wait 9 weeks for my 2nd infusion of ipi/nivo. I returned to work part time about 2 months after beginning ipi/nivo immunotherapy. I was well enough in October 2016 to take a 3 week vacation in Australia.

                                  In May 2018 I received radiation to a cancerous lymph node under my jaw. This was to treat the cancer. I had no pain due to this melanoma met. My health care team decided that radiation had a better chance of working than surgery would.

                                  I retired 4 years ago. I am 78 years old. Last summer I ran 8 miles or bicycled 24 miles on most days. I shoveled snow yesterday afternoon and this morning.

                                  Christinad
                                  Participant
                                    I too have multiple bone Mets. Fortunately, I don’t have pain other than mild aches here and there. So far I’ve only had one scan that showed an overall improvement in all areas. Next one is end of March. My oncologist said if I reach a complete response, I’d have to do immunotherapy at least another year before having a discussion about stopping. He also said I don’t have to stop treatment, I can continue as long as I want to. I think I would continue as long as I’m still tolerating the infusion well. Why not? Thank you for sharing your success to give hope to those of us in the midst of battle.
                                  Daisy2018
                                  Participant
                                    Edwin, you have given me hope. I m very grateful you responded. God bless your heart and many more years of life and happiness to you!
                                    That’s why we need this forum to know that there is a hope.
                                    Some days are pretty dark. I try not to think about it and I know I do everything I can. I make myself assignments for my mind and my body to complete. I usually think about this disease this way. I do everything I can to stay alive and I should not be miserable or filled with anxieties and feats whatever time I have left on this earth. I better enjoy every day and hope for the best.
                                    It is scary some days though.

                                    Sounds like you were participating in a trial back then. I don’t think they do Nivo this long anymore. Sounds like in about 2 months your pain was better?! Like after 2 infusions?

                                    It’s been months and a half since I started treatment and there is no way I can work now.

                                    I had a conversation with my mother yesterday and told her about your experience. I said remember though according to research women have slightly less success rate with immunotherapy then men. She asked me why do I think so.
                                    I m not sure. My guess?! Evolutionary women are tougher and out survive men in survival situations. I said maybe our immune system still resists the effect of immunotherapy and doesn’t want recognize it as a change it needs to make and respond?!
                                    I guess it’s the question to researches!?
                                    I hope to see you around Edwin. Thank you everybody who responded!

                                      Edwin
                                      Participant
                                        I was not in a clinical trial. The FDA approved ipi/nivo immunotherapy as treatment for stage 4 melanoma a few months before I began this treatment.

                                        In 2016 immunotherapy drug makers recommended continuing immunotherapy for stage 4 melanoma until disease progression or unacceptable side effects. My oncologist following the advice of Dr Weber stopped my immunotherapy when I had been NED for 2 years.

                                        My bone pain became a little less painful two months after I began ipi/nivo treatment.

                                        Between August 2015 and August 2016 I expected to die within a year.

                                      Daisy2018
                                      Participant
                                        I see. God bless DR. Weber. He consults in my case too. This days insurance company probably won’t be paying for infusions this long.

                                        How soon you became NED after initiating of treatment? Did it take a while to clear up all the lesions? Was it a gradual process?

                                        The jaw lymph node cancer was it melanoma or secondary malignancy?
                                        Thanks Edwin, it’s nice you are still around here talking to people on this board, give them hope. I don’t ask my doctor how long I have left but looking how things are developing things are growing pretty fast and need to be contained!!!

                                          Edwin
                                          Participant
                                            I was NED 3 years after my 1st treatment and 2 1/2 years after beginning ipi/nivo immunotherapy. My 1st PET scan after completing 4 ipi/nivo infusions showed great improvement. Subsequent PET scans showed bone mets becoming less and less active. The melanoma met under my jaw became more active until treated by radiation.
                                          Daisy2018
                                          Participant
                                            Thanks Edwin!
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