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Yervoy is our hero!!!!!

Forums General Melanoma Community Yervoy is our hero!!!!!

  • Post
    Ashykay
    Participant

      Hi everyone,

      Hi everyone,

      Just thought I'd provide an update on my Mum. As some of you may know, the oncologist last Thursday basically waved Mum out the door and said good luck, no more treatments for you (apart from Gleevac – for which Mum has not tested positive to the c-kit mutation, only c-kit staining, i.e. highly unlikely to work!). During this appointment, Dad and I took in all of the research we had found and started throwing them at him to see what he said about each trial/treatment we had mentioned. As part of this, we brought up Yervoy. He was incredbily negative about it and said it had shocking side effects and didn't target rare primary spinal melanomas like my Mum's. On our persuasion, he agreed to refer Mum to an immunologist "jsut to be sure", but again talked abotu side effects and that this is basically a useless option.

      Was he wrong (I am furious, just on a side note….)…..Mum went to the immunologist yesterday, who had some options for Mum. He knew exactly what he was talking about, was spot on with facts, and it had appeared he'd done some research which was very surprising considering that no other doctors had done this before. He hasn't ruled out trying to get it all out via surgery, however he suggested Mum start on a trial they are doing at this hospital in Brisbane, Australia (which is the same hospital as where the oncologist is – NOT happy. Do these people talk to each other? Clear not. Sounds pathetic if you ask me). The trial involves Mum firstly going onto chemotherapy – not as treatment, but rather as eligibility to access Yervoy. The doctors will then put Mum on Yervoy, and at the same time, they will go in and take a large (being 2cm of the 5 x 4cm tumour) section of the tumour on her spine and formulate a vaccine based on the exact genetic makeup of her tumour. My understanding is that the Yervoy has the effect of removing the protective "shield" on the tumour which prevents it being killed by the body's immune system, and while the shield is off, the vaccine has the effect of going in and killing the tumour.

      There are obviously risks with this approach – side effects of treatment itself as well as the surgery which is always going to eb risky due to the position on the sacrum. The immunologist told Mum that her chances of significant side effects would be 1 in 100, and I believe she is prepared to take this risk.

      I'm not sure whether anyone has been through this treatment/trial before? I know quite a lot of you have been on/are on Yervoy? Would appreciate feedback 🙂

      Feeling very relieved that someone is listening to us now and willing to trial something. I am trying not to get my hopes up despite being so happy and excited about this, as it seems we always get disappointed everytime we get our hopes up. Dad adn I will continue our quest to follow up doctors in Sydney, especially with respect to schwannomas – which they don't believe it is but we want to be sure.

      Will keep you updated! Ashley

       

    Viewing 5 reply threads
    • Replies
        JuleFL
        Participant
          Thanks for the update. Glad to see that your mom now has options and a doctor who is proactive. Best wishes.

          Jule

          JuleFL
          Participant
            Thanks for the update. Glad to see that your mom now has options and a doctor who is proactive. Best wishes.

            Jule

            benp
            Participant

              Hi Ashley, 

              Great your getting some good treatment. Do you know the name or any of the other details of this trial? I had a look on clinicaltrials.gov, though couldn't find anything that it might be.

              Thanks, 

              Ben.

              benp
              Participant

                Hi Ashley, 

                Great your getting some good treatment. Do you know the name or any of the other details of this trial? I had a look on clinicaltrials.gov, though couldn't find anything that it might be.

                Thanks, 

                Ben.

                  Ashykay
                  Participant

                    Hi Ben,

                    Don't know at all much about the trial (didn't even know it existed until Monday!), but it is being run in Brisbane and involves a combination treatment with Yervoy.

                    I will try get some further information via my parents for you once they see the immunologist again.

                    I'm pretty sure clinicaltrials.gov is a US based website – I don't know whether there is an equivalent here in Australia.

                    Sorry I couldn't be of more help!

                    Ashley

                    Ashykay
                    Participant

                      Hi Ben,

                      Don't know at all much about the trial (didn't even know it existed until Monday!), but it is being run in Brisbane and involves a combination treatment with Yervoy.

                      I will try get some further information via my parents for you once they see the immunologist again.

                      I'm pretty sure clinicaltrials.gov is a US based website – I don't know whether there is an equivalent here in Australia.

                      Sorry I couldn't be of more help!

                      Ashley

                    FormerCaregiver
                    Participant

                      Thanks for the update, Ashley. It must be a big relief for your mum to be now referred
                      to a doctor who is caring and competent!

                      It is interesting that you are now dealing with an immunologist. Melanoma is responsive
                      to immunological treatments, and therefore it is great that your mum has someone who can
                      really help her. Vaccine therapy shows promise as it is designed to help the immune
                      system to fight the malignant cells. Hopefully she will respond well to it.

                      Of course, it is also important that your mum will now have access to Yervoy.

                      From what I have read, a schwannoma can be confused for melanoma because they are both
                      S-100 positive. See: http://en.wikipedia.org/wiki/Schwannoma and
                      http://en.wikipedia.org/wiki/S-100_protein

                      However, I think that it is wise to assume that the tumour is melanoma as the
                      immunologist has done.

                      Best wishes

                      Frank from Australia

                      FormerCaregiver
                      Participant

                        Thanks for the update, Ashley. It must be a big relief for your mum to be now referred
                        to a doctor who is caring and competent!

                        It is interesting that you are now dealing with an immunologist. Melanoma is responsive
                        to immunological treatments, and therefore it is great that your mum has someone who can
                        really help her. Vaccine therapy shows promise as it is designed to help the immune
                        system to fight the malignant cells. Hopefully she will respond well to it.

                        Of course, it is also important that your mum will now have access to Yervoy.

                        From what I have read, a schwannoma can be confused for melanoma because they are both
                        S-100 positive. See: http://en.wikipedia.org/wiki/Schwannoma and
                        http://en.wikipedia.org/wiki/S-100_protein

                        However, I think that it is wise to assume that the tumour is melanoma as the
                        immunologist has done.

                        Best wishes

                        Frank from Australia

                          Ashykay
                          Participant

                            Hi Frank,

                            It is a huge relief. Now we're just praying that the orthapedic surgeon says yes to the large biopsy – to me that's our biggest barrier to this at the moment. We should know that by next Tuesday.

                            Mum's original biopsy did test postive to the S-100 protein. The pathology report did however (not sure why…) think that it was a malignant melanoma as opposed to a nerve sheath tumour (which I think schwannoma falls within this group). I'm even hoping that the pathology is wrong…and I won't give up till we're 100% sure it ISN'T a schwannoma.

                            Thanks for yoru post!

                            Ashley

                            Ashykay
                            Participant

                              Hi Frank,

                              It is a huge relief. Now we're just praying that the orthapedic surgeon says yes to the large biopsy – to me that's our biggest barrier to this at the moment. We should know that by next Tuesday.

                              Mum's original biopsy did test postive to the S-100 protein. The pathology report did however (not sure why…) think that it was a malignant melanoma as opposed to a nerve sheath tumour (which I think schwannoma falls within this group). I'm even hoping that the pathology is wrong…and I won't give up till we're 100% sure it ISN'T a schwannoma.

                              Thanks for yoru post!

                              Ashley

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