Previously Ear to lungs now lungs to stomach
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Previously Ear to lungs now lungs to stomach

› Forums › General Melanoma Community › Previously Ear to lungs now lungs to stomach

  • Post
    • September 24, 2015 at 1:57 pm
    WallyE
    Participant

    Hello all

    I am from Johannesburg South Africa

    I have not visited this site for quite some time as I went NED during 2011 having had Melenoma in the lung (primary a mole on my ear which was supposed to have been in situ.

    In March this year I was diagnosed with prostate cancer and yesterday I underwent Brachytherapy (implantation of radiation pellets) after having had a TURP in June.

    Since the beginning of the year I have been plagued with a cough. None of the doctors I saw could tell me what the problem was. I eventually asked my GP last week to refer me to a specialist for a colonoscopy and / or gastroscopy to see if we could get to the root of the problem. He thought this was a good idea, referenced me and I had the procedure done last Wednesday. I was told it was a very large stomach ulcer and that my colon was clear. Good news! But because of my previous history with melanoma, the surgeon deemed it appropriate to send a biopsy sample for analysis.

    Good thing he did. I got the result yesterday while in hospital after the Brachytherapy while waiting to be discharged.

    I was told that the ulcer turned out to be a rather large melanoma tumor. What a shock to the system!

    Anyway, we will be meeting next Wednesday to discuss the way forward, incorporating a full body pet scan to see if it has possibly spread to any other parts of my body.

    I am told that if it has spread further, I may have to apply for a clinical trial. If I do not qualify, obviously because of the prohibitive cost of the treatment, we will have to see if my medical aid will pay.

    The other alternative is a stomach resection.

    What I need to know is what is the prognosis and whether anybody out there has has a similar diagnosis and how was it treated. I am really floored as this was the last thing I expected.

     

Viewing 8 reply threads
  • Replies
      • September 26, 2015 at 9:52 am
      WallyE
      Participant

      Is there really no one out there who can or is prepared to give me guidance?

      Thank you in anticipation.

      Wally

      • September 26, 2015 at 9:52 am
      WallyE
      Participant

      Is there really no one out there who can or is prepared to give me guidance?

      Thank you in anticipation.

      Wally

      • September 26, 2015 at 9:52 am
      WallyE
      Participant

      Is there really no one out there who can or is prepared to give me guidance?

      Thank you in anticipation.

      Wally

      • September 26, 2015 at 10:25 am
      Jubes
      Participant

      All I can say Wally is that I really feel for you and you must get a melanoma specialist. Here in Australia they seem to go for reducing the melanoma with systemic treatment like keytruda or nivolumab. That way the body has not been weakened by the surgery and the tumour has hopefully been reduced before surgery. It has  been approved here for first line treatment so cost is not an issue thank heavens as it is very expensive. Mine is in the lung so I have no experience with stomach Mets and maybe your prostate is another issue that the doctors need to consider. But please make sure you find a melanoma specialist

      sorry I don't know more but I hope you stay strong and get the right advice

      anne-Louise 

      • September 26, 2015 at 10:25 am
      Jubes
      Participant

      All I can say Wally is that I really feel for you and you must get a melanoma specialist. Here in Australia they seem to go for reducing the melanoma with systemic treatment like keytruda or nivolumab. That way the body has not been weakened by the surgery and the tumour has hopefully been reduced before surgery. It has  been approved here for first line treatment so cost is not an issue thank heavens as it is very expensive. Mine is in the lung so I have no experience with stomach Mets and maybe your prostate is another issue that the doctors need to consider. But please make sure you find a melanoma specialist

      sorry I don't know more but I hope you stay strong and get the right advice

      anne-Louise 

      • September 26, 2015 at 10:25 am
      Jubes
      Participant

      All I can say Wally is that I really feel for you and you must get a melanoma specialist. Here in Australia they seem to go for reducing the melanoma with systemic treatment like keytruda or nivolumab. That way the body has not been weakened by the surgery and the tumour has hopefully been reduced before surgery. It has  been approved here for first line treatment so cost is not an issue thank heavens as it is very expensive. Mine is in the lung so I have no experience with stomach Mets and maybe your prostate is another issue that the doctors need to consider. But please make sure you find a melanoma specialist

      sorry I don't know more but I hope you stay strong and get the right advice

      anne-Louise 

        • September 26, 2015 at 10:28 am
        Jubes
        Participant

        Ps as for prognosis. My tumour was 8 cm and has reduced to 3 cm on keytruda and has been stable all this year 

        • September 26, 2015 at 10:28 am
        Jubes
        Participant

        Ps as for prognosis. My tumour was 8 cm and has reduced to 3 cm on keytruda and has been stable all this year 

        • September 26, 2015 at 10:28 am
        Jubes
        Participant

        Ps as for prognosis. My tumour was 8 cm and has reduced to 3 cm on keytruda and has been stable all this year 

        • September 26, 2015 at 10:53 am
        WallyE
        Participant

        Thank you so much formyour input Jubes.

        It gives me a start so I can see what I must aim for as I have no idea at this stage what the discussion content on Wednesday will be. I am not overly concerned about Prostate as I think we have tht under control. My real concern is that I already have mets to the lung and now to the stomach. I have tried to Google the subject but there is virtually no information on stomach mets – only lung and that I have already been through.

        Kind regards and thanks for the information supplied.

        Wally

        • September 26, 2015 at 10:53 am
        WallyE
        Participant

        Thank you so much formyour input Jubes.

        It gives me a start so I can see what I must aim for as I have no idea at this stage what the discussion content on Wednesday will be. I am not overly concerned about Prostate as I think we have tht under control. My real concern is that I already have mets to the lung and now to the stomach. I have tried to Google the subject but there is virtually no information on stomach mets – only lung and that I have already been through.

        Kind regards and thanks for the information supplied.

        Wally

        • September 26, 2015 at 10:53 am
        WallyE
        Participant

        Thank you so much formyour input Jubes.

        It gives me a start so I can see what I must aim for as I have no idea at this stage what the discussion content on Wednesday will be. I am not overly concerned about Prostate as I think we have tht under control. My real concern is that I already have mets to the lung and now to the stomach. I have tried to Google the subject but there is virtually no information on stomach mets – only lung and that I have already been through.

        Kind regards and thanks for the information supplied.

        Wally

      • September 26, 2015 at 12:41 pm
      BrianP
      Participant

      WallyE,

      Sorry for the diagnosis.  It's hard to say what your prognosis is not knowing what the treatment options are in S. Africa.  If you can get a Anti-PD1 agent like Opdivo or Keytruda I would definitely go for that.  Historically the first step has always been to resect and then treat but as the previous poster alluded to because the treatments are becoming more effective they may decide to treat systemically and then resect.  I would recommend you post over on Melanoma International Foundations forum.  As the title suggest it as an international lean to it and the moderator, Catherine Poole, will go to great lengths to help people find trials and treatment in other countries outside the US.

      Best of luck to you. 

      Brian

       

      • September 26, 2015 at 12:41 pm
      BrianP
      Participant

      WallyE,

      Sorry for the diagnosis.  It's hard to say what your prognosis is not knowing what the treatment options are in S. Africa.  If you can get a Anti-PD1 agent like Opdivo or Keytruda I would definitely go for that.  Historically the first step has always been to resect and then treat but as the previous poster alluded to because the treatments are becoming more effective they may decide to treat systemically and then resect.  I would recommend you post over on Melanoma International Foundations forum.  As the title suggest it as an international lean to it and the moderator, Catherine Poole, will go to great lengths to help people find trials and treatment in other countries outside the US.

      Best of luck to you. 

      Brian

       

      • September 26, 2015 at 12:41 pm
      BrianP
      Participant

      WallyE,

      Sorry for the diagnosis.  It's hard to say what your prognosis is not knowing what the treatment options are in S. Africa.  If you can get a Anti-PD1 agent like Opdivo or Keytruda I would definitely go for that.  Historically the first step has always been to resect and then treat but as the previous poster alluded to because the treatments are becoming more effective they may decide to treat systemically and then resect.  I would recommend you post over on Melanoma International Foundations forum.  As the title suggest it as an international lean to it and the moderator, Catherine Poole, will go to great lengths to help people find trials and treatment in other countries outside the US.

      Best of luck to you. 

      Brian

       

Viewing 8 reply threads

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