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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
    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
        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

            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

              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

                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

                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

                  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

                    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

                        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

                          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

                            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

                            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

                              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

                                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!

                                  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!

                                    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!

                                        alicia
                                        Participant
                                          Thanks so much!!!!
                                          alicia
                                          Participant
                                            Thanks so much!!!!
                                            alicia
                                            Participant
                                              Thanks so much!!!!
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