my friend was just diagnosed with stage IV melanoma to Liver and spleen
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my friend was just diagnosed with stage IV melanoma to Liver and spleen

› Forums › General Melanoma Community › my friend was just diagnosed with stage IV melanoma to Liver and spleen

  • Post
    • November 22, 2011 at 1:58 am
    alicia
    Participant

    Hello friends,

    Hello friends,

    A very close friend of mine was diagnosed 2 yrs ago with stage 3a melanoma.  just 6 months ago it spread to his right lung with a single metastasis.  He had the rt upper lobe removed and did no treatment after.  He just had CT chest abd/pelvis 7 weeks ago with NED.  Just a week ago he began having back pain and dark colored urine.  Did MRI of abdomen and found out today he has widespread metastatic disease to the liver and spleen.  What treatment options are there for this type of disease and are any of you having good results with your treatments for liver/spleen mets.  thanks so much!!!!  you all have been such a great support to me through my battle as well.  much love to you all!!!!

     

    Alicia stage 3 w/ mult primary tumors and lymph node involvement ( 1 yr of interferon currently NED)

Viewing 8 reply threads
  • Replies
      • November 22, 2011 at 2:48 am
      deardad
      Participant

      Hi sorry to hear about your friend firstly.

      My father has liver. spleen, lungs as well as others, and is currently on vermurafenib a braf inhibitor. He is having a good response after 3 months, but unfortunately it's not durable. Your friend needs to have a tumor genetically tested for the braf mutation.

      In saying all this, vemurafenib might not been the first line of treatment recommended but worth getting tested ahead of time to see if she has this mutation. There are many more experienced ones on this board that I'm sure will post soon. Have a good oncologist is probably the first best step.

      Take care

      Nahmi from Melbourne

        • November 22, 2011 at 3:34 am
        Lisa13
        Participant
        I’m so sorry to hear about your friends diagnosis.

        I think the most important thing he should do right now is check to see if he’s BRAF positive. If he is, this medicine can work very quickly at shrinking his tumours. Although it’s known to not last too long, once the tumours have shrunk and are stable, he could then get right into ipi. Ipi (yervoy) needs time to work – about 3 months, so if he has small tumours, this would be a good time to use it. If they’re bigger, then it’s probably best to start BRAF if he’s positive. It all comes down to how widespread his disease is and how many and how big tumours may be. This information is important in choosing treatments.

        Aside from these main drugs that are both showing promise, there is also chemo, anti pd-1 or interluken 2. Antipd-1 is new and is showing very good results in clinical studies.

        I truly wish him the best. Even though this is a scary time, don’t have him give up for a minute.

        Lisa

        • November 22, 2011 at 3:34 am
        Lisa13
        Participant
        I’m so sorry to hear about your friends diagnosis.

        I think the most important thing he should do right now is check to see if he’s BRAF positive. If he is, this medicine can work very quickly at shrinking his tumours. Although it’s known to not last too long, once the tumours have shrunk and are stable, he could then get right into ipi. Ipi (yervoy) needs time to work – about 3 months, so if he has small tumours, this would be a good time to use it. If they’re bigger, then it’s probably best to start BRAF if he’s positive. It all comes down to how widespread his disease is and how many and how big tumours may be. This information is important in choosing treatments.

        Aside from these main drugs that are both showing promise, there is also chemo, anti pd-1 or interluken 2. Antipd-1 is new and is showing very good results in clinical studies.

        I truly wish him the best. Even though this is a scary time, don’t have him give up for a minute.

        Lisa

        • November 22, 2011 at 3:34 am
        Lisa13
        Participant
        I’m so sorry to hear about your friends diagnosis.

        I think the most important thing he should do right now is check to see if he’s BRAF positive. If he is, this medicine can work very quickly at shrinking his tumours. Although it’s known to not last too long, once the tumours have shrunk and are stable, he could then get right into ipi. Ipi (yervoy) needs time to work – about 3 months, so if he has small tumours, this would be a good time to use it. If they’re bigger, then it’s probably best to start BRAF if he’s positive. It all comes down to how widespread his disease is and how many and how big tumours may be. This information is important in choosing treatments.

        Aside from these main drugs that are both showing promise, there is also chemo, anti pd-1 or interluken 2. Antipd-1 is new and is showing very good results in clinical studies.

        I truly wish him the best. Even though this is a scary time, don’t have him give up for a minute.

        Lisa

      • November 22, 2011 at 2:48 am
      deardad
      Participant

      Hi sorry to hear about your friend firstly.

      My father has liver. spleen, lungs as well as others, and is currently on vermurafenib a braf inhibitor. He is having a good response after 3 months, but unfortunately it's not durable. Your friend needs to have a tumor genetically tested for the braf mutation.

      In saying all this, vemurafenib might not been the first line of treatment recommended but worth getting tested ahead of time to see if she has this mutation. There are many more experienced ones on this board that I'm sure will post soon. Have a good oncologist is probably the first best step.

      Take care

      Nahmi from Melbourne

      • November 22, 2011 at 2:48 am
      deardad
      Participant

      Hi sorry to hear about your friend firstly.

      My father has liver. spleen, lungs as well as others, and is currently on vermurafenib a braf inhibitor. He is having a good response after 3 months, but unfortunately it's not durable. Your friend needs to have a tumor genetically tested for the braf mutation.

      In saying all this, vemurafenib might not been the first line of treatment recommended but worth getting tested ahead of time to see if she has this mutation. There are many more experienced ones on this board that I'm sure will post soon. Have a good oncologist is probably the first best step.

      Take care

      Nahmi from Melbourne

      • November 22, 2011 at 4:23 am
      FormerCaregiver
      Participant

      Alicia, I wonder if your friend is seeing a melanoma specialist? I am concerned to read
      that he has widespread metastatic disease to the liver and spleen. If you have a copy of
      the scan report, can you tell us what it says?

      I feel that surgery, if possible is the best initial way to treat melanoma. It would
      therefore be good to consult a surgical oncologist about this. I don't know of any
      really successful treatments for liver mets, although clinical trials are always worth
      looking at.

      Unfortunately, there has been some negative news about the BRAF inhibitor vemurafenib
      (Zelboraf) recently. See the abstract: "Vemurafenib (PLX4032) promotes epigenetic
      changes in melanoma cells leading to development of more invasive metastatic disease"
      at: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full

      Some other treatment options could include: IL-2, an anti PD-1 (MDX-1106) clinical trial
      or TIL treatment (adoptive cell therapy).

      Hope this helps.

      Frank from Australia

        • November 22, 2011 at 4:54 am
        alicia
        Participant

        thank you all so much for responding so quickly.  He is BRAF positive and went to Vandy when he had the lung met that was resected but hasn't been back.  His oncologist he has locally is not a melanoma specialst.  they tested his lung met at Vandy and said it was BRAF positive.  He just found out about the liver mets and spleen mets today but said that on prior scans the radiologist just said his liver looked fatty now its metastatic disease.  Thanks so much for replying.  Much love to  you all!!!!!

         

         

        Alicia

        • November 22, 2011 at 4:54 am
        alicia
        Participant

        thank you all so much for responding so quickly.  He is BRAF positive and went to Vandy when he had the lung met that was resected but hasn't been back.  His oncologist he has locally is not a melanoma specialst.  they tested his lung met at Vandy and said it was BRAF positive.  He just found out about the liver mets and spleen mets today but said that on prior scans the radiologist just said his liver looked fatty now its metastatic disease.  Thanks so much for replying.  Much love to  you all!!!!!

         

         

        Alicia

        • November 22, 2011 at 4:54 am
        alicia
        Participant

        thank you all so much for responding so quickly.  He is BRAF positive and went to Vandy when he had the lung met that was resected but hasn't been back.  His oncologist he has locally is not a melanoma specialst.  they tested his lung met at Vandy and said it was BRAF positive.  He just found out about the liver mets and spleen mets today but said that on prior scans the radiologist just said his liver looked fatty now its metastatic disease.  Thanks so much for replying.  Much love to  you all!!!!!

         

         

        Alicia

      • November 22, 2011 at 4:23 am
      FormerCaregiver
      Participant

      Alicia, I wonder if your friend is seeing a melanoma specialist? I am concerned to read
      that he has widespread metastatic disease to the liver and spleen. If you have a copy of
      the scan report, can you tell us what it says?

      I feel that surgery, if possible is the best initial way to treat melanoma. It would
      therefore be good to consult a surgical oncologist about this. I don't know of any
      really successful treatments for liver mets, although clinical trials are always worth
      looking at.

      Unfortunately, there has been some negative news about the BRAF inhibitor vemurafenib
      (Zelboraf) recently. See the abstract: "Vemurafenib (PLX4032) promotes epigenetic
      changes in melanoma cells leading to development of more invasive metastatic disease"
      at: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full

      Some other treatment options could include: IL-2, an anti PD-1 (MDX-1106) clinical trial
      or TIL treatment (adoptive cell therapy).

      Hope this helps.

      Frank from Australia

      • November 22, 2011 at 4:23 am
      FormerCaregiver
      Participant

      Alicia, I wonder if your friend is seeing a melanoma specialist? I am concerned to read
      that he has widespread metastatic disease to the liver and spleen. If you have a copy of
      the scan report, can you tell us what it says?

      I feel that surgery, if possible is the best initial way to treat melanoma. It would
      therefore be good to consult a surgical oncologist about this. I don't know of any
      really successful treatments for liver mets, although clinical trials are always worth
      looking at.

      Unfortunately, there has been some negative news about the BRAF inhibitor vemurafenib
      (Zelboraf) recently. See the abstract: "Vemurafenib (PLX4032) promotes epigenetic
      changes in melanoma cells leading to development of more invasive metastatic disease"
      at: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full

      Some other treatment options could include: IL-2, an anti PD-1 (MDX-1106) clinical trial
      or TIL treatment (adoptive cell therapy).

      Hope this helps.

      Frank from Australia

      • November 23, 2011 at 12:15 pm
      Hereiam
      Participant

      Hello Alicia, 

      I am very sorry about your friend, and I hope that soon everything will get better.

      The only thing I can add to the previous comments is that maybe your friend should explore such treatment method as Virotherapy, because it might do good on your friend`s immune system, and it is said to be particularly effective in shrinking the tumors if combined with other treatment methods. 

      Well, but that is just my suggestion.

      Take care and I wish a soon recovery to your friend!

      • November 23, 2011 at 12:15 pm
      Hereiam
      Participant

      Hello Alicia, 

      I am very sorry about your friend, and I hope that soon everything will get better.

      The only thing I can add to the previous comments is that maybe your friend should explore such treatment method as Virotherapy, because it might do good on your friend`s immune system, and it is said to be particularly effective in shrinking the tumors if combined with other treatment methods. 

      Well, but that is just my suggestion.

      Take care and I wish a soon recovery to your friend!

      • November 23, 2011 at 12:15 pm
      Hereiam
      Participant

      Hello Alicia, 

      I am very sorry about your friend, and I hope that soon everything will get better.

      The only thing I can add to the previous comments is that maybe your friend should explore such treatment method as Virotherapy, because it might do good on your friend`s immune system, and it is said to be particularly effective in shrinking the tumors if combined with other treatment methods. 

      Well, but that is just my suggestion.

      Take care and I wish a soon recovery to your friend!

        • December 2, 2011 at 12:51 am
        alicia
        Participant
        Thanks so much!!!!
        • December 2, 2011 at 12:51 am
        alicia
        Participant
        Thanks so much!!!!
        • December 2, 2011 at 12:51 am
        alicia
        Participant
        Thanks so much!!!!
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