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Unknown primary, bone and liver mets

Forums Ocular Melanoma Community Unknown primary, bone and liver mets

  • Post
    Tamils
    Participant

      My father was diagnosed with stage iv melanoma last November after a lump in his skull turned out to be melanoma.  They could not find a primary on his skin.  He had had a spot behind his retina for 20 years or more, which had undergone a very tiny change, but an eye specialist ruled out ocular melanoma.  After his surgery to remove the skull met, his scans were clear.  Fast forward to his latest scans from last week, and he has two spots on the right lobe of his liver, as well as apparent lesions on various bones.

      My father was diagnosed with stage iv melanoma last November after a lump in his skull turned out to be melanoma.  They could not find a primary on his skin.  He had had a spot behind his retina for 20 years or more, which had undergone a very tiny change, but an eye specialist ruled out ocular melanoma.  After his surgery to remove the skull met, his scans were clear.  Fast forward to his latest scans from last week, and he has two spots on the right lobe of his liver, as well as apparent lesions on various bones.  Today his oncologist, in combination with a different eye specialist who hasn't seen him for nine months, says that it's ocular melanoma, based solely on the fact that it has metastasized to the liver.  I'm not convinced it's OM.  Has anyone else had a fairly rapid met to the liver with an unknown primary, that wasn't considered OM?  I will cross-post this to the Cure OM board as well.

      The doctor also said that the mets were progressing too rapidly for ipi or IL-2 to work.  He is B-RAF negative.  She recommends Temodar but says it isn't much use.  We are collecting his records as quickly as possible to get a specialist's opinion.  He is otherwise in pretty good health and is in no pain; sure ipi can take awhile to work, but don't some people respond within a month or two?  I am also looking at clinicaltrials.gov.  Any comments on treatment would also be appreciated.  Thank you so much.

    Viewing 17 reply threads
    • Replies
        Fen
        Participant

          Where are you being treated?  Do you feel like you need a second opinion or a new onc?  If you are not at a melanoma center of excellence then you need to get there.    Good luck and please keep us posted.

          Fen

          Fen
          Participant

            Where are you being treated?  Do you feel like you need a second opinion or a new onc?  If you are not at a melanoma center of excellence then you need to get there.    Good luck and please keep us posted.

            Fen

            Fen
            Participant

              Where are you being treated?  Do you feel like you need a second opinion or a new onc?  If you are not at a melanoma center of excellence then you need to get there.    Good luck and please keep us posted.

              Fen

                Tamils
                Participant

                  Kaiser in the SF Bay Area, by a non-melanoma specialist.  My dad was NED after the surgery in November, so we thought we had a little time to find a specialist, and it also seemed like there wasn't much in the way of adjuvant therapy.  We got a referral to Dr Gailani, the mel specialist at Kaiser-Riverside, but then he suddenly went on leave.  Kaiser simply doesn't have any melanoma specialists now, from what I can tell.  We thought we would wait for his next scan, but it turned out so badly that now we are scrambling to get to UCSF and Dr. Daud, though we will be paying out of pocket.  Thanks for the good wishes.

                  kylez
                  Participant

                    I also was at Kaiser until a couple of years ago, and I also did self-pay to get several second opinions from Dr. Daud and Dr. Algazi, another melanoma specialist there. They've both been great. I eventually switched insurers so I could actually see the local melanoma specialists that are literally 4 miles from me, as my primary oncologist.

                    I did IL-2 with Dr. Gailani which, for my situation, Dr. Daud concurred at the time. I hope Dr. G gets the R&R and whatever else he needs, he is a very hard working doctor.

                    In 2010 it cost me about $400/visit to see UCSF oncologists as "self-pay", and I consider it was money very well spent. The sooner you can get in the better. Let them know the situation, hopefully the front desk will know to get you in to see the docs fast, they certainly should. 

                    – Kyle

                    kylez
                    Participant

                      I also was at Kaiser until a couple of years ago, and I also did self-pay to get several second opinions from Dr. Daud and Dr. Algazi, another melanoma specialist there. They've both been great. I eventually switched insurers so I could actually see the local melanoma specialists that are literally 4 miles from me, as my primary oncologist.

                      I did IL-2 with Dr. Gailani which, for my situation, Dr. Daud concurred at the time. I hope Dr. G gets the R&R and whatever else he needs, he is a very hard working doctor.

                      In 2010 it cost me about $400/visit to see UCSF oncologists as "self-pay", and I consider it was money very well spent. The sooner you can get in the better. Let them know the situation, hopefully the front desk will know to get you in to see the docs fast, they certainly should. 

                      – Kyle

                      kylez
                      Participant

                        I also was at Kaiser until a couple of years ago, and I also did self-pay to get several second opinions from Dr. Daud and Dr. Algazi, another melanoma specialist there. They've both been great. I eventually switched insurers so I could actually see the local melanoma specialists that are literally 4 miles from me, as my primary oncologist.

                        I did IL-2 with Dr. Gailani which, for my situation, Dr. Daud concurred at the time. I hope Dr. G gets the R&R and whatever else he needs, he is a very hard working doctor.

                        In 2010 it cost me about $400/visit to see UCSF oncologists as "self-pay", and I consider it was money very well spent. The sooner you can get in the better. Let them know the situation, hopefully the front desk will know to get you in to see the docs fast, they certainly should. 

                        – Kyle

                        Tamils
                        Participant

                          Kaiser in the SF Bay Area, by a non-melanoma specialist.  My dad was NED after the surgery in November, so we thought we had a little time to find a specialist, and it also seemed like there wasn't much in the way of adjuvant therapy.  We got a referral to Dr Gailani, the mel specialist at Kaiser-Riverside, but then he suddenly went on leave.  Kaiser simply doesn't have any melanoma specialists now, from what I can tell.  We thought we would wait for his next scan, but it turned out so badly that now we are scrambling to get to UCSF and Dr. Daud, though we will be paying out of pocket.  Thanks for the good wishes.

                          Tamils
                          Participant

                            Kaiser in the SF Bay Area, by a non-melanoma specialist.  My dad was NED after the surgery in November, so we thought we had a little time to find a specialist, and it also seemed like there wasn't much in the way of adjuvant therapy.  We got a referral to Dr Gailani, the mel specialist at Kaiser-Riverside, but then he suddenly went on leave.  Kaiser simply doesn't have any melanoma specialists now, from what I can tell.  We thought we would wait for his next scan, but it turned out so badly that now we are scrambling to get to UCSF and Dr. Daud, though we will be paying out of pocket.  Thanks for the good wishes.

                            POW
                            Participant

                              For what it's worth…

                              After becoming resistant to Zelboraf, my brother consulted with Dr. Geoffrey Gibney at Moffitt. Dr. Gibney recommended Yervoy. I asked if there was time for it to work and Dr. Gibney said that nobody knows how quickly it works– standard protocols say to wait 12 weeks before the first scan so who knows what happens before 12 weeks? He also said that it does work faster than 12 weeks in some patients and that just getting 2 or 3 doses of Yervoy might do the trick. 

                              And, yes, if your father is not going to a melanoma Center of Excellence, you should at least get a second opinion there before deciding on the next treatment. 

                              POW
                              Participant

                                For what it's worth…

                                After becoming resistant to Zelboraf, my brother consulted with Dr. Geoffrey Gibney at Moffitt. Dr. Gibney recommended Yervoy. I asked if there was time for it to work and Dr. Gibney said that nobody knows how quickly it works– standard protocols say to wait 12 weeks before the first scan so who knows what happens before 12 weeks? He also said that it does work faster than 12 weeks in some patients and that just getting 2 or 3 doses of Yervoy might do the trick. 

                                And, yes, if your father is not going to a melanoma Center of Excellence, you should at least get a second opinion there before deciding on the next treatment. 

                                POW
                                Participant

                                  For what it's worth…

                                  After becoming resistant to Zelboraf, my brother consulted with Dr. Geoffrey Gibney at Moffitt. Dr. Gibney recommended Yervoy. I asked if there was time for it to work and Dr. Gibney said that nobody knows how quickly it works– standard protocols say to wait 12 weeks before the first scan so who knows what happens before 12 weeks? He also said that it does work faster than 12 weeks in some patients and that just getting 2 or 3 doses of Yervoy might do the trick. 

                                  And, yes, if your father is not going to a melanoma Center of Excellence, you should at least get a second opinion there before deciding on the next treatment. 

                                Colleen66
                                Participant

                                  Is you Dad on social security?  If not he could get qualified quickly.  That will give some money coming in until benefits start.

                                  Good luck on the treatment you decide on.  You guys are now bound to my heart as are so many on the board.

                                  Colleen 

                                  Colleen66
                                  Participant

                                    Is you Dad on social security?  If not he could get qualified quickly.  That will give some money coming in until benefits start.

                                    Good luck on the treatment you decide on.  You guys are now bound to my heart as are so many on the board.

                                    Colleen 

                                    Colleen66
                                    Participant

                                      Is you Dad on social security?  If not he could get qualified quickly.  That will give some money coming in until benefits start.

                                      Good luck on the treatment you decide on.  You guys are now bound to my heart as are so many on the board.

                                      Colleen 

                                      King
                                      Participant

                                        Hi,

                                        I was diagnosed with Stage III melanoma in 2004 with an unknown primary.  I had a small lump in my left groin which turned out to be melanoma in a lymph node.  After surgery to remove the lymph nodes in my groin, I did 12 months of Interferon.  Ten weeks later,  I had a 3.3 cm lesion in my liver.  So, it was actually 16 months since the diagnosis of Stage III melanoma with an unknown primary but for 12 of those months I was on Interferon which might have delayed the recurrence.  Never was ocular melanoma mentioned.

                                        I think you will consider the money well spent to see Dr. Adil Daud.  He was at Moffitt Cancer Center in Tampa in 2005 when the melanoma spread to my liver.  He was the individual responsible for referring me to a very aggressive and skilled surgeon who removed 70% of my liver (the entire right lobe).

                                        Here it is…2013 and I am still alive and quite well (yes, I have had recurrences since).

                                        Keep us posted but you are heading in the right direction.

                                        Stay Strong
                                        King 

                                        Stage IV  7/05 Liver mets

                                        King
                                        Participant

                                          Hi,

                                          I was diagnosed with Stage III melanoma in 2004 with an unknown primary.  I had a small lump in my left groin which turned out to be melanoma in a lymph node.  After surgery to remove the lymph nodes in my groin, I did 12 months of Interferon.  Ten weeks later,  I had a 3.3 cm lesion in my liver.  So, it was actually 16 months since the diagnosis of Stage III melanoma with an unknown primary but for 12 of those months I was on Interferon which might have delayed the recurrence.  Never was ocular melanoma mentioned.

                                          I think you will consider the money well spent to see Dr. Adil Daud.  He was at Moffitt Cancer Center in Tampa in 2005 when the melanoma spread to my liver.  He was the individual responsible for referring me to a very aggressive and skilled surgeon who removed 70% of my liver (the entire right lobe).

                                          Here it is…2013 and I am still alive and quite well (yes, I have had recurrences since).

                                          Keep us posted but you are heading in the right direction.

                                          Stay Strong
                                          King 

                                          Stage IV  7/05 Liver mets

                                          King
                                          Participant

                                            Hi,

                                            I was diagnosed with Stage III melanoma in 2004 with an unknown primary.  I had a small lump in my left groin which turned out to be melanoma in a lymph node.  After surgery to remove the lymph nodes in my groin, I did 12 months of Interferon.  Ten weeks later,  I had a 3.3 cm lesion in my liver.  So, it was actually 16 months since the diagnosis of Stage III melanoma with an unknown primary but for 12 of those months I was on Interferon which might have delayed the recurrence.  Never was ocular melanoma mentioned.

                                            I think you will consider the money well spent to see Dr. Adil Daud.  He was at Moffitt Cancer Center in Tampa in 2005 when the melanoma spread to my liver.  He was the individual responsible for referring me to a very aggressive and skilled surgeon who removed 70% of my liver (the entire right lobe).

                                            Here it is…2013 and I am still alive and quite well (yes, I have had recurrences since).

                                            Keep us posted but you are heading in the right direction.

                                            Stay Strong
                                            King 

                                            Stage IV  7/05 Liver mets

                                            audgator
                                            Participant

                                              My story is similar to the above. My stage III showed up in a neck lymph node with no primary discovered. I did the year of interferon & 6 months later we found small mets in the liver & lungs. They got a little bigger after the full round of ipi, but that's just me. Nothing works for everyone. I am on something that is working; my lungs are clear & the liver is improving.     Best wishes!     Dan

                                              audgator
                                              Participant

                                                My story is similar to the above. My stage III showed up in a neck lymph node with no primary discovered. I did the year of interferon & 6 months later we found small mets in the liver & lungs. They got a little bigger after the full round of ipi, but that's just me. Nothing works for everyone. I am on something that is working; my lungs are clear & the liver is improving.     Best wishes!     Dan

                                                audgator
                                                Participant

                                                  My story is similar to the above. My stage III showed up in a neck lymph node with no primary discovered. I did the year of interferon & 6 months later we found small mets in the liver & lungs. They got a little bigger after the full round of ipi, but that's just me. Nothing works for everyone. I am on something that is working; my lungs are clear & the liver is improving.     Best wishes!     Dan

                                                  Linny
                                                  Participant

                                                    I'm Stage III with an unknown primary and as with some of the other posters, occular melanoma was never brought up.

                                                    Unknown primaries are strange. I was told that at one point I must have had a mole/freckle with melanoma, which my immune system took care of. But in the process, some cells escaped and caused a problem in a lymph node.

                                                    Because it affects a small percentage of patients, you need to seek out a melanoma specialist ASAP because he/she will have seen this phenomenon before and best know how to deal with it.

                                                    Linny
                                                    Participant

                                                      I'm Stage III with an unknown primary and as with some of the other posters, occular melanoma was never brought up.

                                                      Unknown primaries are strange. I was told that at one point I must have had a mole/freckle with melanoma, which my immune system took care of. But in the process, some cells escaped and caused a problem in a lymph node.

                                                      Because it affects a small percentage of patients, you need to seek out a melanoma specialist ASAP because he/she will have seen this phenomenon before and best know how to deal with it.

                                                      Linny
                                                      Participant

                                                        I'm Stage III with an unknown primary and as with some of the other posters, occular melanoma was never brought up.

                                                        Unknown primaries are strange. I was told that at one point I must have had a mole/freckle with melanoma, which my immune system took care of. But in the process, some cells escaped and caused a problem in a lymph node.

                                                        Because it affects a small percentage of patients, you need to seek out a melanoma specialist ASAP because he/she will have seen this phenomenon before and best know how to deal with it.

                                                        Tamils
                                                        Participant

                                                          Thank you all for your input and support.  I am going to overnight his medical records to UCSF today; they want to review them before making an appointment.  We are also going to see the Kaiser opthalmologist on Thursday who thinks it is OM.  It was a UCSF specialist who examined his eyes and ruled out OM last fall, so we don't know what to think right now.

                                                          Tamils
                                                          Participant

                                                            Thank you all for your input and support.  I am going to overnight his medical records to UCSF today; they want to review them before making an appointment.  We are also going to see the Kaiser opthalmologist on Thursday who thinks it is OM.  It was a UCSF specialist who examined his eyes and ruled out OM last fall, so we don't know what to think right now.

                                                            Tamils
                                                            Participant

                                                              Thank you all for your input and support.  I am going to overnight his medical records to UCSF today; they want to review them before making an appointment.  We are also going to see the Kaiser opthalmologist on Thursday who thinks it is OM.  It was a UCSF specialist who examined his eyes and ruled out OM last fall, so we don't know what to think right now.

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