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Stage of desperation now…update on my Mum

Forums General Melanoma Community Stage of desperation now…update on my Mum

  • Post
    Ashykay
    Participant
      Hi all,

      Just thought I would provide an update after my Mum’s oncologist appointment today.

      All in all, it’s not great. The oncologist would like to keep her CT scans to ensure that the growth didn’t actually occur prior to the radiation, and whether or not the radiation has affected the density of the tumour, although this doesn’t appear to have reduced the tumour on the outside. I think realistically we can take from this however that the tumour has grown and radiation wasn’t successful at all. We are praying to be proven wrong.

      Options from here on – although Mum’s biopsy tested negative to c-kit positive gene mutation, the oncologist seems to still be pushing the Gleevac due to the c-kit staining. Dad and I tried to raise some immunology treatments such as Yervoy with him but he was incredibly dismissive of it and recommended Gleevac still. He back pedaled again then by saying that he needs to get access to the drug – he had basically guaranteed us weeks ago that this would be accessible, even if Mum didn’t have the biopsy tested for c-kit positive. Quite po’d at this. He has recommended us to an immunologist to see what his opinion is, but he was very discouraging of this approach due to teh side effects involved with immunology drugs (which I understand).

      Dad and I have concluded that he oncologist takes the safe approach….he was disinterested in any experimental treatments, trials and the like. Dad and I will continue our search…we’re going to try another oncologist – our aim is to find someone who is willing to go out of their way to help us find something (be it experimental or not) and be more aggressive with respec t to treatments. We really don’t have any other options.

      I suppose then we will consider whether a move to the United States could be considered on the basis of the trials they have going over there….hopefully Dr Hodi will get in touch, even if we could teleconference options or approachs which we could try access through Australia.

      Anyway so that’s my update. I’m not sure what to say to Mum at the moment…Dad and I are speechless. I had a good cry when I got back to worka fter the appointment, and trying to move on now as best as I possibly can.

      Ashley

    Viewing 11 reply threads
    • Replies
        FormerCaregiver
        Participant

          Ashley, I am sorry to read this. Unfortunately, some oncologists like to keep
          recommending old treatments that are most familiar to them. I think that you are very
          correct in concluding the oncologist wants to take the safe approach. Therefore, it is
          time to look elsewhere, and this means that some travel might be involved.

          Here is a link to a thread that might be useful:
          http://www.melanoma.org/community/mpip-melanoma-patients-information-page/access-yevoy

          Take care

          Frank from Australia

          FormerCaregiver
          Participant

            Ashley, I am sorry to read this. Unfortunately, some oncologists like to keep
            recommending old treatments that are most familiar to them. I think that you are very
            correct in concluding the oncologist wants to take the safe approach. Therefore, it is
            time to look elsewhere, and this means that some travel might be involved.

            Here is a link to a thread that might be useful:
            http://www.melanoma.org/community/mpip-melanoma-patients-information-page/access-yevoy

            Take care

            Frank from Australia

            triciad
            Participant

              Ashley,

              I am sorry to hear this news.  It sound like another opinion is warranted.  Good luck with your search, and please keep us posted.  You all will be in my prayers.

              Tricia

              triciad
              Participant

                Ashley,

                I am sorry to hear this news.  It sound like another opinion is warranted.  Good luck with your search, and please keep us posted.  You all will be in my prayers.

                Tricia

                fgilbert63
                Participant

                  Ashley, it is very upsetting that oncologists won't seek out the best options.  Drs can are very selfish and $$ motivated, they don't want to lose a patient to another hospital/institution even when they know they can't provide the best treatment for the patient.  Frank

                  fgilbert63
                  Participant

                    Ashley, it is very upsetting that oncologists won't seek out the best options.  Drs can are very selfish and $$ motivated, they don't want to lose a patient to another hospital/institution even when they know they can't provide the best treatment for the patient.  Frank

                    fgilbert63
                    Participant

                      Ashley, it is very upsetting that oncologists won't seek out the best options.  Drs can are very selfish and $$ motivated, they don't want to lose a patient to another hospital/institution even when they know they can't provide the best treatment for the patient.  Frank

                      fgilbert63
                      Participant

                        Ashley, it is very upsetting that oncologists won't seek out the best options.  Drs can are very selfish and $$ motivated, they don't want to lose a patient to another hospital/institution even when they know they can't provide the best treatment for the patient.  Frank

                        fgilbert63
                        Participant

                          Ashley, it is very upsetting that oncologists won't seek out the best options.  Drs can are very selfish and $$ motivated, they don't want to lose a patient to another hospital/institution even when they know they can't provide the best treatment for the patient.  Frank

                          fgilbert63
                          Participant

                            Ashley, it is very upsetting that oncologists won't seek out the best options.  Drs can are very selfish and $$ motivated, they don't want to lose a patient to another hospital/institution even when they know they can't provide the best treatment for the patient.  Frank

                            fgilbert63
                            Participant

                              Ashley, it is very upsetting that oncologists won't seek out the best options.  Drs can are very selfish and $$ motivated, they don't want to lose a patient to another hospital/institution even when they know they can't provide the best treatment for the patient.  Frank

                              fgilbert63
                              Participant

                                Ashley, it is very upsetting that oncologists won't seek out the best options.  Drs can are very selfish and $$ motivated, they don't want to lose a patient to another hospital/institution even when they know they can't provide the best treatment for the patient.  Frank

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