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Latest effect from Yervoy Treatments

Forums Ocular Melanoma Community Latest effect from Yervoy Treatments

  • Post
    TomKeepRockin
    Participant

      Hi –

      Hi –

      I am about to start with my first treatment of Yervoy ("Ipi")next week at Kimmel Cancer Hospital (Philadelphia) under the guidance of Dr. Sato. I have had one immunoablation (early Sept) to the liver and will have a second one next week as well. Diagnosis is several small lesions (0-5cm) discovered. Last May initial Cancer (Uveal) Melanoma to the eye and had no choice but enucleation – and chromosomal/genetic tests suggested high % of metastization. So, it's been caught relatively early with constant MRI's, bloodwork and other tests. So – just wanted to know other people are reacting to the Yervoy tratments,, any commonalities. As you all can see, by viewing the yervoy website is nothing short of a death sentence… Thank You! Tom 

    Viewing 5 reply threads
    • Replies
        shadowace
        Participant

          i am going to start my 7th dose in april this year , i too am looking for answers, i am NED to date, stage 3B melanoma,

          the symptoms are what are listed the most being fatigue, some diarrhea, itching,only got sick on my recent infusion the next day, as the seem to accumulate as i continue with treatments.

          i am on here to see what there is after treatments are done.  good luck with your treatments and life ttyl

          shadowace
          Participant

            i am going to start my 7th dose in april this year , i too am looking for answers, i am NED to date, stage 3B melanoma,

            the symptoms are what are listed the most being fatigue, some diarrhea, itching,only got sick on my recent infusion the next day, as the seem to accumulate as i continue with treatments.

            i am on here to see what there is after treatments are done.  good luck with your treatments and life ttyl

            shadowace
            Participant

              i am going to start my 7th dose in april this year , i too am looking for answers, i am NED to date, stage 3B melanoma,

              the symptoms are what are listed the most being fatigue, some diarrhea, itching,only got sick on my recent infusion the next day, as the seem to accumulate as i continue with treatments.

              i am on here to see what there is after treatments are done.  good luck with your treatments and life ttyl

                eyecancerny
                Participant

                  Hi Shadowace,

                  Was your primary diagnosis cutaneous melanoma or ocular melanoma?

                  Best,

                  Anne Marie

                  shadowace
                  Participant

                    malign neoplasm melanoma skin, unspecified origin

                    they took a lump out from under my left arm, that confirmed melanoma with a positive BRAF mutation

                    i hope this helps you, with whatever, as i am looking for answers myself, seem like  we are living in the middle of doubt

                    at the moment, lol

                    shadowace
                    Participant

                      malign neoplasm melanoma skin, unspecified origin

                      they took a lump out from under my left arm, that confirmed melanoma with a positive BRAF mutation

                      i hope this helps you, with whatever, as i am looking for answers myself, seem like  we are living in the middle of doubt

                      at the moment, lol

                      shadowace
                      Participant

                        malign neoplasm melanoma skin, unspecified origin

                        they took a lump out from under my left arm, that confirmed melanoma with a positive BRAF mutation

                        i hope this helps you, with whatever, as i am looking for answers myself, seem like  we are living in the middle of doubt

                        at the moment, lol

                        eyecancerny
                        Participant

                          Hi Shadowace,

                          Was your primary diagnosis cutaneous melanoma or ocular melanoma?

                          Best,

                          Anne Marie

                          eyecancerny
                          Participant

                            Hi Shadowace,

                            Was your primary diagnosis cutaneous melanoma or ocular melanoma?

                            Best,

                            Anne Marie

                          eyecancerny
                          Participant

                            Hi Tom,

                            Sorry to hear about the mets.  You're in good hands with Dr. Sato.  Please keep us posted on your health and what you're experiencing.  Some people have very little side effects.  Hopefully you will be one of them

                            Best,

                            Anne Marie

                              ThatHomeschoolDad
                              Participant

                                My Ipi reactions haven't been bad at all.  For a while I had none and wished for something, just for some evidence.  I got a full torso rash, but it wasn't awful, and I took predisone for a few weeks.  That dose is down to half strength as of Monday, going to quarter next week, unless my skin flares up again.  Ipi also destroyed my thyroid, so that's a daily dose of synthroid for life, but I've seen no side effects from that.   Sato is gonna add testosterone injections next, because my level has pretty much bottomed out, but is that from the Ipi or from being 47?  Hmmm…  

                                –Tom

                                ThatHomeschoolDad
                                Participant

                                  My Ipi reactions haven't been bad at all.  For a while I had none and wished for something, just for some evidence.  I got a full torso rash, but it wasn't awful, and I took predisone for a few weeks.  That dose is down to half strength as of Monday, going to quarter next week, unless my skin flares up again.  Ipi also destroyed my thyroid, so that's a daily dose of synthroid for life, but I've seen no side effects from that.   Sato is gonna add testosterone injections next, because my level has pretty much bottomed out, but is that from the Ipi or from being 47?  Hmmm…  

                                  –Tom

                                  lak
                                  Participant

                                    Its from hypo pituitaryism fits with the underactive thyroid . The pituitary gland in brain is responsible for stimulating the various hormone releasing organs to work. If the Pituitary does not work then they wont work. The main problem you may have is you might not make natural steroids and so be unable to get off steroids when the time came. it may have happened to me we are not a 100% sure.

                                    lak
                                    Participant

                                      Its from hypo pituitaryism fits with the underactive thyroid . The pituitary gland in brain is responsible for stimulating the various hormone releasing organs to work. If the Pituitary does not work then they wont work. The main problem you may have is you might not make natural steroids and so be unable to get off steroids when the time came. it may have happened to me we are not a 100% sure.

                                      lak
                                      Participant

                                        Its from hypo pituitaryism fits with the underactive thyroid . The pituitary gland in brain is responsible for stimulating the various hormone releasing organs to work. If the Pituitary does not work then they wont work. The main problem you may have is you might not make natural steroids and so be unable to get off steroids when the time came. it may have happened to me we are not a 100% sure.

                                        ThatHomeschoolDad
                                        Participant

                                          My Ipi reactions haven't been bad at all.  For a while I had none and wished for something, just for some evidence.  I got a full torso rash, but it wasn't awful, and I took predisone for a few weeks.  That dose is down to half strength as of Monday, going to quarter next week, unless my skin flares up again.  Ipi also destroyed my thyroid, so that's a daily dose of synthroid for life, but I've seen no side effects from that.   Sato is gonna add testosterone injections next, because my level has pretty much bottomed out, but is that from the Ipi or from being 47?  Hmmm…  

                                          –Tom

                                        eyecancerny
                                        Participant

                                          Hi Tom,

                                          Sorry to hear about the mets.  You're in good hands with Dr. Sato.  Please keep us posted on your health and what you're experiencing.  Some people have very little side effects.  Hopefully you will be one of them

                                          Best,

                                          Anne Marie

                                          eyecancerny
                                          Participant

                                            Hi Tom,

                                            Sorry to hear about the mets.  You're in good hands with Dr. Sato.  Please keep us posted on your health and what you're experiencing.  Some people have very little side effects.  Hopefully you will be one of them

                                            Best,

                                            Anne Marie

                                        Viewing 5 reply threads
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