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Maligment malenoma in lung

Forums General Melanoma Community Maligment malenoma in lung

  • Post
    gemmy32
    Participant

      Hello there wondering if anyone can help me, my mother in law has been diagnosed with a stage 4 maligment malenoma in her lung, she is awaiting doctors to confirm her treatment plan, does anyone know of any drugs that can be taken that work really with with the malenoma. What would be the best treatment for her? She is only 52 has four children an 8 grandchildren, she doesn't want to die it's devastating. 

    Viewing 20 reply threads
    • Replies
        AnitaLoree
        Participant

          Dear Gemmy: Sounds like she is blessed with a very loving and supportive family.  Yes there are drugs/radiation that can help and excellent melanoma treatment centers.  Please post more info:  where does she live? Any tests on her melanoma for unique expressions? Any other findings will be helpful.  Lots of very knowledgeable folks here can give you refs.  Lots of hugs to your whole family

          AnitaLoree
          Participant

            Dear Gemmy: Sounds like she is blessed with a very loving and supportive family.  Yes there are drugs/radiation that can help and excellent melanoma treatment centers.  Please post more info:  where does she live? Any tests on her melanoma for unique expressions? Any other findings will be helpful.  Lots of very knowledgeable folks here can give you refs.  Lots of hugs to your whole family

            AnitaLoree
            Participant

              Dear Gemmy: Sounds like she is blessed with a very loving and supportive family.  Yes there are drugs/radiation that can help and excellent melanoma treatment centers.  Please post more info:  where does she live? Any tests on her melanoma for unique expressions? Any other findings will be helpful.  Lots of very knowledgeable folks here can give you refs.  Lots of hugs to your whole family

              buffcody
              Participant

                In 2012 melanoma was found on my lung, primary tumor unknown.  I was operated on within two months to remove the 5 cm. tumor along with the lower lobe of my right lung.  Two other metastases appeared in my brain in October and these were radiated and I started on a course of ipilimumab.  Since then, only one definite tumor has shown up.  This was a subcutaneous tumor on my buttocks, which was easily removed.  A couple of new suspicious spots have shown up on scans this year, but nothing definitiive.  We're keeping a watch on them to remove and/or start another systemic therapy if needed.  I've had my share of side effects probably from the ipi, but I'm feeling quite well these days and might not have succeeded so well with the ipi if I had not had the side effects.  I wish your mother the best.  Not time to give up, for sure!

                buffcody
                Participant

                  In 2012 melanoma was found on my lung, primary tumor unknown.  I was operated on within two months to remove the 5 cm. tumor along with the lower lobe of my right lung.  Two other metastases appeared in my brain in October and these were radiated and I started on a course of ipilimumab.  Since then, only one definite tumor has shown up.  This was a subcutaneous tumor on my buttocks, which was easily removed.  A couple of new suspicious spots have shown up on scans this year, but nothing definitiive.  We're keeping a watch on them to remove and/or start another systemic therapy if needed.  I've had my share of side effects probably from the ipi, but I'm feeling quite well these days and might not have succeeded so well with the ipi if I had not had the side effects.  I wish your mother the best.  Not time to give up, for sure!

                  buffcody
                  Participant

                    In 2012 melanoma was found on my lung, primary tumor unknown.  I was operated on within two months to remove the 5 cm. tumor along with the lower lobe of my right lung.  Two other metastases appeared in my brain in October and these were radiated and I started on a course of ipilimumab.  Since then, only one definite tumor has shown up.  This was a subcutaneous tumor on my buttocks, which was easily removed.  A couple of new suspicious spots have shown up on scans this year, but nothing definitiive.  We're keeping a watch on them to remove and/or start another systemic therapy if needed.  I've had my share of side effects probably from the ipi, but I'm feeling quite well these days and might not have succeeded so well with the ipi if I had not had the side effects.  I wish your mother the best.  Not time to give up, for sure!

                    arthurjedi007
                    Participant

                      The best treatment for a person is the one that works for that person. It took the 4th type of medicine before I got anything to shrink. The other medicines were great for many people just not me. With only the one tumor I would think the first line of treatment the docs would be talking about is ipi. Maybe and that is just maybe between the 3rd and 4th doses of ipi maybe do a precise focused radiation on that tumor just to make hopefully certain it gets gone. By doing that timing it can sometimes get the combined benefit of immunotherapy and radiation. If that still doesn't get it then I would think pd1. Anyway that is my opinion. Even if she is BRAF positive I would think she would want to save those (ie: taf/mek combo or zel) for later if she needs to rapidly shrink a dangerously positioned tumor. But again that's just my opinion. Clinical trials are of course an option as well. So that is what I would expect her doctors to be saying but they are the doctors and may know better than me and they have lots more information about her so they could be seeing other things going on.

                      Artie

                      arthurjedi007
                      Participant

                        The best treatment for a person is the one that works for that person. It took the 4th type of medicine before I got anything to shrink. The other medicines were great for many people just not me. With only the one tumor I would think the first line of treatment the docs would be talking about is ipi. Maybe and that is just maybe between the 3rd and 4th doses of ipi maybe do a precise focused radiation on that tumor just to make hopefully certain it gets gone. By doing that timing it can sometimes get the combined benefit of immunotherapy and radiation. If that still doesn't get it then I would think pd1. Anyway that is my opinion. Even if she is BRAF positive I would think she would want to save those (ie: taf/mek combo or zel) for later if she needs to rapidly shrink a dangerously positioned tumor. But again that's just my opinion. Clinical trials are of course an option as well. So that is what I would expect her doctors to be saying but they are the doctors and may know better than me and they have lots more information about her so they could be seeing other things going on.

                        Artie

                        arthurjedi007
                        Participant

                          The best treatment for a person is the one that works for that person. It took the 4th type of medicine before I got anything to shrink. The other medicines were great for many people just not me. With only the one tumor I would think the first line of treatment the docs would be talking about is ipi. Maybe and that is just maybe between the 3rd and 4th doses of ipi maybe do a precise focused radiation on that tumor just to make hopefully certain it gets gone. By doing that timing it can sometimes get the combined benefit of immunotherapy and radiation. If that still doesn't get it then I would think pd1. Anyway that is my opinion. Even if she is BRAF positive I would think she would want to save those (ie: taf/mek combo or zel) for later if she needs to rapidly shrink a dangerously positioned tumor. But again that's just my opinion. Clinical trials are of course an option as well. So that is what I would expect her doctors to be saying but they are the doctors and may know better than me and they have lots more information about her so they could be seeing other things going on.

                          Artie

                          ed williams
                          Participant

                            Hi there gemmy32, just wanted to add to the other comments. I became stage 4 last summer (2013) with Lung and Brain mets. The tumor in the lung was in a location that was to dangerous to operate, so we waiting for the Bristol Myer Squibb trial of Ipi and Nivolumab to open. I was lucky enough to have stable brain mets by Jan and started the trial. By then I had another small met in the lymph node near the one in the lung, both responded to the drugs and are they continue to remain stable. I am in a double blind study, so I can't say for sure which drugs I am getting. Immunotherapy treatments seem to be working for many, they may not cure the melanoma but they are keeping the beast under control. Best wishes Ed

                              gemmy32
                              Participant
                                Hello everyone thanks so much for your comments. She had skin cancer ten ago a mole on her arm this was removed an told everything was ok. 5 week ago they found a tumour on her right lower lobe 3.5 cm with avid raises lymph node, this has been diagnosed as a melanoma. She is waiting to see the specalist in Preston we are from the Uk. She would like to know as much as she can before the doctors tell her the treatment plan. She has been told she may not be suitable for surgery even though its only in one lung from a specialist nurse. She really wanted surgery just to get rid of it, she is devastated an no one wants to lose her.
                                gemmy32
                                Participant
                                  Once again thanks so much everyone for taking the time to reply it means so much to us all at this difficult time.
                                  gemmy32
                                  Participant
                                    Once again thanks so much everyone for taking the time to reply it means so much to us all at this difficult time.
                                    gemmy32
                                    Participant
                                      Once again thanks so much everyone for taking the time to reply it means so much to us all at this difficult time.
                                      Jubes
                                      Participant

                                        Hi gemmy32 your mothers melanoma sounds a lot like mine. I had a very superficial hutchinsons freckle removed from my arm 10 years ago and this year had a bad cough for a few months and turns out its stage 4 with a 5 cm mass in my lung and also some melanoma in the nodes in my chest cavity. The diagnosis is very scary and so shocking.  I think surgery would be a last resort for me as they seem to think the whole lung and some chest cavity would have to go. That is a big op and needs several months to recover before they can put you on the ipi or pembrolizumab, which are the latest great drugs. I don't think it's as easy to cut out melanoma as some other cancers. She is lucky to have you and I hope you have as wonderful drs there as we have here in Australia. I am 57. I wish you all the best !

                                        Jubes
                                        Participant

                                          Hi gemmy32 your mothers melanoma sounds a lot like mine. I had a very superficial hutchinsons freckle removed from my arm 10 years ago and this year had a bad cough for a few months and turns out its stage 4 with a 5 cm mass in my lung and also some melanoma in the nodes in my chest cavity. The diagnosis is very scary and so shocking.  I think surgery would be a last resort for me as they seem to think the whole lung and some chest cavity would have to go. That is a big op and needs several months to recover before they can put you on the ipi or pembrolizumab, which are the latest great drugs. I don't think it's as easy to cut out melanoma as some other cancers. She is lucky to have you and I hope you have as wonderful drs there as we have here in Australia. I am 57. I wish you all the best !

                                          Jubes
                                          Participant

                                            Hi gemmy32 your mothers melanoma sounds a lot like mine. I had a very superficial hutchinsons freckle removed from my arm 10 years ago and this year had a bad cough for a few months and turns out its stage 4 with a 5 cm mass in my lung and also some melanoma in the nodes in my chest cavity. The diagnosis is very scary and so shocking.  I think surgery would be a last resort for me as they seem to think the whole lung and some chest cavity would have to go. That is a big op and needs several months to recover before they can put you on the ipi or pembrolizumab, which are the latest great drugs. I don't think it's as easy to cut out melanoma as some other cancers. She is lucky to have you and I hope you have as wonderful drs there as we have here in Australia. I am 57. I wish you all the best !

                                            kylez
                                            Participant

                                              Every case is different, this is how mine started out. Metastatic melanoma was first found in my lungs (and nowhere else). There were 8 slow-growing lesions spread across both lungs. They did surgery to confirm that it was melanoma. However, with multiple lesions spread across both lungs, their recommendation was to find a systemic therapy. They felt that if there were 8 detectable lesions like I had then ones I had, they thought there was probably more undetectable disease as well, so they didn't think surgery would get everything. And none of them were bigger than 1cm so there wasn't a pressing need to get a big one out either. This was 2010 before any of the newer drugs were approved. They treated me with IL-2. After 4 1-week cycles, melanoma in my lungs was undetectable. It did come back elsewhere, but to date the 8 original lesions in my lungs have not come back.

                                              kylez
                                              Participant

                                                Every case is different, this is how mine started out. Metastatic melanoma was first found in my lungs (and nowhere else). There were 8 slow-growing lesions spread across both lungs. They did surgery to confirm that it was melanoma. However, with multiple lesions spread across both lungs, their recommendation was to find a systemic therapy. They felt that if there were 8 detectable lesions like I had then ones I had, they thought there was probably more undetectable disease as well, so they didn't think surgery would get everything. And none of them were bigger than 1cm so there wasn't a pressing need to get a big one out either. This was 2010 before any of the newer drugs were approved. They treated me with IL-2. After 4 1-week cycles, melanoma in my lungs was undetectable. It did come back elsewhere, but to date the 8 original lesions in my lungs have not come back.

                                                kylez
                                                Participant

                                                  Every case is different, this is how mine started out. Metastatic melanoma was first found in my lungs (and nowhere else). There were 8 slow-growing lesions spread across both lungs. They did surgery to confirm that it was melanoma. However, with multiple lesions spread across both lungs, their recommendation was to find a systemic therapy. They felt that if there were 8 detectable lesions like I had then ones I had, they thought there was probably more undetectable disease as well, so they didn't think surgery would get everything. And none of them were bigger than 1cm so there wasn't a pressing need to get a big one out either. This was 2010 before any of the newer drugs were approved. They treated me with IL-2. After 4 1-week cycles, melanoma in my lungs was undetectable. It did come back elsewhere, but to date the 8 original lesions in my lungs have not come back.

                                                  gemmy32
                                                  Participant
                                                    Hello everyone thanks so much for your comments. She had skin cancer ten ago a mole on her arm this was removed an told everything was ok. 5 week ago they found a tumour on her right lower lobe 3.5 cm with avid raises lymph node, this has been diagnosed as a melanoma. She is waiting to see the specalist in Preston we are from the Uk. She would like to know as much as she can before the doctors tell her the treatment plan. She has been told she may not be suitable for surgery even though its only in one lung from a specialist nurse. She really wanted surgery just to get rid of it, she is devastated an no one wants to lose her.
                                                    gemmy32
                                                    Participant
                                                      Hello everyone thanks so much for your comments. She had skin cancer ten ago a mole on her arm this was removed an told everything was ok. 5 week ago they found a tumour on her right lower lobe 3.5 cm with avid raises lymph node, this has been diagnosed as a melanoma. She is waiting to see the specalist in Preston we are from the Uk. She would like to know as much as she can before the doctors tell her the treatment plan. She has been told she may not be suitable for surgery even though its only in one lung from a specialist nurse. She really wanted surgery just to get rid of it, she is devastated an no one wants to lose her.
                                                    ed williams
                                                    Participant

                                                      Hi there gemmy32, just wanted to add to the other comments. I became stage 4 last summer (2013) with Lung and Brain mets. The tumor in the lung was in a location that was to dangerous to operate, so we waiting for the Bristol Myer Squibb trial of Ipi and Nivolumab to open. I was lucky enough to have stable brain mets by Jan and started the trial. By then I had another small met in the lymph node near the one in the lung, both responded to the drugs and are they continue to remain stable. I am in a double blind study, so I can't say for sure which drugs I am getting. Immunotherapy treatments seem to be working for many, they may not cure the melanoma but they are keeping the beast under control. Best wishes Ed

                                                      ed williams
                                                      Participant

                                                        Hi there gemmy32, just wanted to add to the other comments. I became stage 4 last summer (2013) with Lung and Brain mets. The tumor in the lung was in a location that was to dangerous to operate, so we waiting for the Bristol Myer Squibb trial of Ipi and Nivolumab to open. I was lucky enough to have stable brain mets by Jan and started the trial. By then I had another small met in the lymph node near the one in the lung, both responded to the drugs and are they continue to remain stable. I am in a double blind study, so I can't say for sure which drugs I am getting. Immunotherapy treatments seem to be working for many, they may not cure the melanoma but they are keeping the beast under control. Best wishes Ed

                                                        JC
                                                        Participant

                                                          Very sorry.  It's very scary to hear more stories of diagnoses 10 years ago, thought I was fine, then stage IV

                                                          JC
                                                          Participant

                                                            Very sorry.  It's very scary to hear more stories of diagnoses 10 years ago, thought I was fine, then stage IV

                                                            JC
                                                            Participant

                                                              Very sorry.  It's very scary to hear more stories of diagnoses 10 years ago, thought I was fine, then stage IV

                                                              DZnDef
                                                              Participant

                                                                I am 48 and Stage IV with metastatic malignant melanoma in my lung(s) unknown primary.  The first tumor was in my right upper lobe all by itself.  I had the lobe surgically removed in October 2012.  It was very difficult surgery to recover from.  It was misdiagnosed and pronounced "cured" at the time so I did no other treatments.  January 2014 they found more tumors this time in my left lung (and diagnosed it correctly via needle biopsy).  I mention all this because surgery by itself is not a cure for melanoma in the lung or my first surgery would have done it.  Once melanoma has reached the lung it is systemic and requires a systemic approach to possibly eradicate it.  If she is BRAF positive, her tumor will be responsive to the BRAF inhibitors.  So far, however, those positive responses have not proven durable (the tumors shrink/disappear for about a year and then come back).  Though there are some drug combos being experimented with that might prove more durable.  However, BRAF inhibitors are still quite useful even if they are not durable.  For example, she could pursue other systemic treatments (Yervoy, Anti-PD1) which are promising for durable responses if they work for her.  But if they don't work and the tumor continues to grow, she could be put on the BRAF inhibitor at that time to shrink the tumor enough for surgery or try a combo which might be durable.  There are lots of clinical trials too.  You will find people on this site that were diagnosed Stage IV many many years ago and are still living their lives.  Some are NED (No Evidence of Disease) and have been for years.

                                                                If she decides to pursue systemic treatment, they tend to prefer to have at least one tumor left intact that they can watch to determine if the treatment is working or not.

                                                                I would also encourage her to see a Naturopath or other Holistic practitioner in addition to a melanoma specialist in order to address her overall health.  We need to be at our healthiest to fight this disease and a Naturopath can assess and provide guidance to achieve overall optimal health.

                                                                Best of luck to your mother-in-law.  She is lucky to have you in her life.

                                                                Maggie

                                                                DZnDef
                                                                Participant

                                                                  I am 48 and Stage IV with metastatic malignant melanoma in my lung(s) unknown primary.  The first tumor was in my right upper lobe all by itself.  I had the lobe surgically removed in October 2012.  It was very difficult surgery to recover from.  It was misdiagnosed and pronounced "cured" at the time so I did no other treatments.  January 2014 they found more tumors this time in my left lung (and diagnosed it correctly via needle biopsy).  I mention all this because surgery by itself is not a cure for melanoma in the lung or my first surgery would have done it.  Once melanoma has reached the lung it is systemic and requires a systemic approach to possibly eradicate it.  If she is BRAF positive, her tumor will be responsive to the BRAF inhibitors.  So far, however, those positive responses have not proven durable (the tumors shrink/disappear for about a year and then come back).  Though there are some drug combos being experimented with that might prove more durable.  However, BRAF inhibitors are still quite useful even if they are not durable.  For example, she could pursue other systemic treatments (Yervoy, Anti-PD1) which are promising for durable responses if they work for her.  But if they don't work and the tumor continues to grow, she could be put on the BRAF inhibitor at that time to shrink the tumor enough for surgery or try a combo which might be durable.  There are lots of clinical trials too.  You will find people on this site that were diagnosed Stage IV many many years ago and are still living their lives.  Some are NED (No Evidence of Disease) and have been for years.

                                                                  If she decides to pursue systemic treatment, they tend to prefer to have at least one tumor left intact that they can watch to determine if the treatment is working or not.

                                                                  I would also encourage her to see a Naturopath or other Holistic practitioner in addition to a melanoma specialist in order to address her overall health.  We need to be at our healthiest to fight this disease and a Naturopath can assess and provide guidance to achieve overall optimal health.

                                                                  Best of luck to your mother-in-law.  She is lucky to have you in her life.

                                                                  Maggie

                                                                  DZnDef
                                                                  Participant

                                                                    I am 48 and Stage IV with metastatic malignant melanoma in my lung(s) unknown primary.  The first tumor was in my right upper lobe all by itself.  I had the lobe surgically removed in October 2012.  It was very difficult surgery to recover from.  It was misdiagnosed and pronounced "cured" at the time so I did no other treatments.  January 2014 they found more tumors this time in my left lung (and diagnosed it correctly via needle biopsy).  I mention all this because surgery by itself is not a cure for melanoma in the lung or my first surgery would have done it.  Once melanoma has reached the lung it is systemic and requires a systemic approach to possibly eradicate it.  If she is BRAF positive, her tumor will be responsive to the BRAF inhibitors.  So far, however, those positive responses have not proven durable (the tumors shrink/disappear for about a year and then come back).  Though there are some drug combos being experimented with that might prove more durable.  However, BRAF inhibitors are still quite useful even if they are not durable.  For example, she could pursue other systemic treatments (Yervoy, Anti-PD1) which are promising for durable responses if they work for her.  But if they don't work and the tumor continues to grow, she could be put on the BRAF inhibitor at that time to shrink the tumor enough for surgery or try a combo which might be durable.  There are lots of clinical trials too.  You will find people on this site that were diagnosed Stage IV many many years ago and are still living their lives.  Some are NED (No Evidence of Disease) and have been for years.

                                                                    If she decides to pursue systemic treatment, they tend to prefer to have at least one tumor left intact that they can watch to determine if the treatment is working or not.

                                                                    I would also encourage her to see a Naturopath or other Holistic practitioner in addition to a melanoma specialist in order to address her overall health.  We need to be at our healthiest to fight this disease and a Naturopath can assess and provide guidance to achieve overall optimal health.

                                                                    Best of luck to your mother-in-law.  She is lucky to have you in her life.

                                                                    Maggie

                                                                      buffcody
                                                                      Participant

                                                                        I am sure there are some fine and competent naturopaths out there.  There are also quacks.  Very important if you are going to another doctor than the oncologist is having them working in concert.  Taking vitamins or other natural aids are not necessarily innocuous.  That's why when asked what medications we are taking every time we visit the oncologist's office we are required to list over the counter drugs, vitamins, and the like as well as prescription drugs.  These obviously do affect the body and can even, unfortunately not only help our health but create problems for it and our treatment.  People will tell you a lot about your beliefs about why they themselves have done so well post-diagnosis.  I've done very well myself.  I've made some changes in the way I live.  But I sure wouldn't claim that what I have done has been responsible for my current relative health.  There's a lot we just don't know. 

                                                                        buffcody
                                                                        Participant

                                                                          I am sure there are some fine and competent naturopaths out there.  There are also quacks.  Very important if you are going to another doctor than the oncologist is having them working in concert.  Taking vitamins or other natural aids are not necessarily innocuous.  That's why when asked what medications we are taking every time we visit the oncologist's office we are required to list over the counter drugs, vitamins, and the like as well as prescription drugs.  These obviously do affect the body and can even, unfortunately not only help our health but create problems for it and our treatment.  People will tell you a lot about your beliefs about why they themselves have done so well post-diagnosis.  I've done very well myself.  I've made some changes in the way I live.  But I sure wouldn't claim that what I have done has been responsible for my current relative health.  There's a lot we just don't know. 

                                                                          kylez
                                                                          Participant

                                                                            To the extent any of these alternative treatments are actually medically active, positively or negatively, where does that leave the MRF posting policy "Share your personal experiences without giving medical advice?"

                                                                            kylez
                                                                            Participant

                                                                              To the extent any of these alternative treatments are actually medically active, positively or negatively, where does that leave the MRF posting policy "Share your personal experiences without giving medical advice?"

                                                                              kylez
                                                                              Participant

                                                                                To the extent any of these alternative treatments are actually medically active, positively or negatively, where does that leave the MRF posting policy "Share your personal experiences without giving medical advice?"

                                                                                DZnDef
                                                                                Participant

                                                                                  Kyle, if suggesting people also see a Naturopath violates the "Share your personal experiences without giving medical advice" policy, then so would saying "see a Melanoma specialist".

                                                                                  DZnDef
                                                                                  Participant

                                                                                    Kyle, if suggesting people also see a Naturopath violates the "Share your personal experiences without giving medical advice" policy, then so would saying "see a Melanoma specialist".

                                                                                    DZnDef
                                                                                    Participant

                                                                                      Kyle, if suggesting people also see a Naturopath violates the "Share your personal experiences without giving medical advice" policy, then so would saying "see a Melanoma specialist".

                                                                                      kylez
                                                                                      Participant

                                                                                        I think I wrote that in an inappropriate context and on the wrong message. 

                                                                                        kylez
                                                                                        Participant

                                                                                          I think I wrote that in an inappropriate context and on the wrong message. 

                                                                                          kylez
                                                                                          Participant

                                                                                            I think I wrote that in an inappropriate context and on the wrong message. 

                                                                                            kylez
                                                                                            Participant

                                                                                              In other words there may be some future message, but I picked wrong to reply on this one. 

                                                                                              kylez
                                                                                              Participant

                                                                                                In other words there may be some future message, but I picked wrong to reply on this one. 

                                                                                                kylez
                                                                                                Participant

                                                                                                  In other words there may be some future message, but I picked wrong to reply on this one. 

                                                                                                  DZnDef
                                                                                                  Participant

                                                                                                    A qualified Naturopath has "NMD" after their name which stands for Naturopathic Medical Doctor.  They have conventional medical training similar to other MDs and can write perscriptions.  Their quack ratio is probably similar to that of other MDs as well.  I am seeing the Naturopath that was recommended by my Oncologist.  They work together.  How is this in any way controversial?  If you exercise more and feel more healthy, why would you not claim that the increase in exercise contributed to your current relative health?  Why make any changes if they don't make you healthier?  Maybe we should all just eat twinkies all day and expect to live to 120?

                                                                                                    DZnDef
                                                                                                    Participant

                                                                                                      A qualified Naturopath has "NMD" after their name which stands for Naturopathic Medical Doctor.  They have conventional medical training similar to other MDs and can write perscriptions.  Their quack ratio is probably similar to that of other MDs as well.  I am seeing the Naturopath that was recommended by my Oncologist.  They work together.  How is this in any way controversial?  If you exercise more and feel more healthy, why would you not claim that the increase in exercise contributed to your current relative health?  Why make any changes if they don't make you healthier?  Maybe we should all just eat twinkies all day and expect to live to 120?

                                                                                                      DZnDef
                                                                                                      Participant

                                                                                                        A qualified Naturopath has "NMD" after their name which stands for Naturopathic Medical Doctor.  They have conventional medical training similar to other MDs and can write perscriptions.  Their quack ratio is probably similar to that of other MDs as well.  I am seeing the Naturopath that was recommended by my Oncologist.  They work together.  How is this in any way controversial?  If you exercise more and feel more healthy, why would you not claim that the increase in exercise contributed to your current relative health?  Why make any changes if they don't make you healthier?  Maybe we should all just eat twinkies all day and expect to live to 120?

                                                                                                        buffcody
                                                                                                        Participant

                                                                                                          I am sure there are some fine and competent naturopaths out there.  There are also quacks.  Very important if you are going to another doctor than the oncologist is having them working in concert.  Taking vitamins or other natural aids are not necessarily innocuous.  That's why when asked what medications we are taking every time we visit the oncologist's office we are required to list over the counter drugs, vitamins, and the like as well as prescription drugs.  These obviously do affect the body and can even, unfortunately not only help our health but create problems for it and our treatment.  People will tell you a lot about your beliefs about why they themselves have done so well post-diagnosis.  I've done very well myself.  I've made some changes in the way I live.  But I sure wouldn't claim that what I have done has been responsible for my current relative health.  There's a lot we just don't know. 

                                                                                                        LuckyMan51
                                                                                                        Participant

                                                                                                          Hi,

                                                                                                          I had a stage four malignant melanoma discovered in my lung during a routine body scan during a bout with untreated strep throat that has moved from the throat into the blood stream. The tumor was in the lower lobe of my left lung. The surgeon did a wedge resection procedure whereby he made a cut on my left side and slipped a tool in between the ribs. The tool very neatly clipped off the lower left lobe and then it cauterized and stapled the lung and the lobe containing the tumor was pulled out like a little bag containing the tumor and they stitched me up. Although I have had some other tumors develop (single brain mets) that needed to be treated I have has no other tumors develop in the lungs. The recovery wasn't terribly difficult away from being very sore and feeling like I was in a car accident. Your mother in law is pretty young so would probably weather that surgery pretty well. That passed in a week or so and my breathing capacity feels fine.  Hopefully your Oncologist is a melanoma specialist and he or she working with your surgeon will be advising you all as to location and ability to access. I chose to go that surgical route as my (MSK) Oncologist said sometimes a surgical solution early in the tumor development is the best solution. There is another school of thought (in my case I got second opinion from Yale) that said don't remove it and go the immunotherapy PD-1 route so you can monitor the tumor for shrinkage. The issue was if I cut it out I couldn't get the immunotherapy treatment approval as I technically wouldn't have melanoma at that point. I went the surgical solution option but looking back from a more educated position I can see both being viable with the leave it and treat it interesting as Pd-1 is now more accessible. Good luck. 

                                                                                                          LuckyMan51
                                                                                                          Participant

                                                                                                            Hi,

                                                                                                            I had a stage four malignant melanoma discovered in my lung during a routine body scan during a bout with untreated strep throat that has moved from the throat into the blood stream. The tumor was in the lower lobe of my left lung. The surgeon did a wedge resection procedure whereby he made a cut on my left side and slipped a tool in between the ribs. The tool very neatly clipped off the lower left lobe and then it cauterized and stapled the lung and the lobe containing the tumor was pulled out like a little bag containing the tumor and they stitched me up. Although I have had some other tumors develop (single brain mets) that needed to be treated I have has no other tumors develop in the lungs. The recovery wasn't terribly difficult away from being very sore and feeling like I was in a car accident. Your mother in law is pretty young so would probably weather that surgery pretty well. That passed in a week or so and my breathing capacity feels fine.  Hopefully your Oncologist is a melanoma specialist and he or she working with your surgeon will be advising you all as to location and ability to access. I chose to go that surgical route as my (MSK) Oncologist said sometimes a surgical solution early in the tumor development is the best solution. There is another school of thought (in my case I got second opinion from Yale) that said don't remove it and go the immunotherapy PD-1 route so you can monitor the tumor for shrinkage. The issue was if I cut it out I couldn't get the immunotherapy treatment approval as I technically wouldn't have melanoma at that point. I went the surgical solution option but looking back from a more educated position I can see both being viable with the leave it and treat it interesting as Pd-1 is now more accessible. Good luck. 

                                                                                                              gemmy32
                                                                                                              Participant

                                                                                                                Hi thanks again everyone for replying. She is having a meeting on Wednesday were they will discuss her treatment plan she is being dealt with in preston does anyone know of any alternate therapys she could be taking as well we want to make sure she is doing all she possibly can. I was thinking surgery would cure it but it won't will it, it's going to keep coming back.its so scary, 

                                                                                                                gemmy32
                                                                                                                Participant

                                                                                                                  Hi thanks again everyone for replying. She is having a meeting on Wednesday were they will discuss her treatment plan she is being dealt with in preston does anyone know of any alternate therapys she could be taking as well we want to make sure she is doing all she possibly can. I was thinking surgery would cure it but it won't will it, it's going to keep coming back.its so scary, 

                                                                                                                  gemmy32
                                                                                                                  Participant

                                                                                                                    Hi thanks again everyone for replying. She is having a meeting on Wednesday were they will discuss her treatment plan she is being dealt with in preston does anyone know of any alternate therapys she could be taking as well we want to make sure she is doing all she possibly can. I was thinking surgery would cure it but it won't will it, it's going to keep coming back.its so scary, 

                                                                                                                    buffcody
                                                                                                                    Participant

                                                                                                                      It is still possible that surgery could cure it.  It has done so for some people.  The idea of waiting to see if there would be more metastasis before starting on systemic treatment was recommended to me by both the University of Michigan and Sloan Kettering before my next metastases showed up that suggested the appropriateness of systemic therapy.  There are potential negative side effects involved with every systemic therapy.  I am not saying that makes removing the lung tumor(s) and waiting the best decision. But it is still a reasonable decision if no further metastases are present in the body.  I am sure your doctor(s) will present the watch and wait as a possible option for your mother.

                                                                                                                      buffcody
                                                                                                                      Participant

                                                                                                                        It is still possible that surgery could cure it.  It has done so for some people.  The idea of waiting to see if there would be more metastasis before starting on systemic treatment was recommended to me by both the University of Michigan and Sloan Kettering before my next metastases showed up that suggested the appropriateness of systemic therapy.  There are potential negative side effects involved with every systemic therapy.  I am not saying that makes removing the lung tumor(s) and waiting the best decision. But it is still a reasonable decision if no further metastases are present in the body.  I am sure your doctor(s) will present the watch and wait as a possible option for your mother.

                                                                                                                        RJoeyB
                                                                                                                        Participant

                                                                                                                          Agreed, listen to all options and ask about them if not presented.  Systemic therapy may be the most likely to be offered, but if it's a single metastasis, surgery or radiation could be options, keeping systemic therapies available for future use.  I've had systemic therapies in the past, but also chose more traditional approaches for a handful of single metastases along the way — the most recent was a lung met that I had successfully radiated in February.  I've had some more recent complications from a prior brain met back in winter 2013, but everything else since the radiation to the lung has been good, next scans in the next few weeks.

                                                                                                                          Joe

                                                                                                                           

                                                                                                                          RJoeyB
                                                                                                                          Participant

                                                                                                                            Agreed, listen to all options and ask about them if not presented.  Systemic therapy may be the most likely to be offered, but if it's a single metastasis, surgery or radiation could be options, keeping systemic therapies available for future use.  I've had systemic therapies in the past, but also chose more traditional approaches for a handful of single metastases along the way — the most recent was a lung met that I had successfully radiated in February.  I've had some more recent complications from a prior brain met back in winter 2013, but everything else since the radiation to the lung has been good, next scans in the next few weeks.

                                                                                                                            Joe

                                                                                                                             

                                                                                                                            RJoeyB
                                                                                                                            Participant

                                                                                                                              Agreed, listen to all options and ask about them if not presented.  Systemic therapy may be the most likely to be offered, but if it's a single metastasis, surgery or radiation could be options, keeping systemic therapies available for future use.  I've had systemic therapies in the past, but also chose more traditional approaches for a handful of single metastases along the way — the most recent was a lung met that I had successfully radiated in February.  I've had some more recent complications from a prior brain met back in winter 2013, but everything else since the radiation to the lung has been good, next scans in the next few weeks.

                                                                                                                              Joe

                                                                                                                               

                                                                                                                              buffcody
                                                                                                                              Participant

                                                                                                                                It is still possible that surgery could cure it.  It has done so for some people.  The idea of waiting to see if there would be more metastasis before starting on systemic treatment was recommended to me by both the University of Michigan and Sloan Kettering before my next metastases showed up that suggested the appropriateness of systemic therapy.  There are potential negative side effects involved with every systemic therapy.  I am not saying that makes removing the lung tumor(s) and waiting the best decision. But it is still a reasonable decision if no further metastases are present in the body.  I am sure your doctor(s) will present the watch and wait as a possible option for your mother.

                                                                                                                                Habs27
                                                                                                                                Participant
                                                                                                                                  Hey there
                                                                                                                                  My mother just had a 3cm tumour found in her left upper lobe in December. They proposed a wedge resection, but in waiting a month for surgery it doubled in size and her pain through the roof. They biopsied and found it was Melanoma. She first had it in the skin 6-7 years ago. They thought they had a good margin so no further treatment.

                                                                                                                                  Now surgery is cancelled and we are trying to get her pain controlled (currently on 6mg of hydromorphone every three hours) and are awaiting referral to the cancer agency here in BC
                                                                                                                                  Has anyone had good experience with cbd for pain control at least to help taper the opiates?
                                                                                                                                  Any idea what the current treatment for an inoperable lung MET?

                                                                                                                                LuckyMan51
                                                                                                                                Participant

                                                                                                                                  Hi,

                                                                                                                                  I had a stage four malignant melanoma discovered in my lung during a routine body scan during a bout with untreated strep throat that has moved from the throat into the blood stream. The tumor was in the lower lobe of my left lung. The surgeon did a wedge resection procedure whereby he made a cut on my left side and slipped a tool in between the ribs. The tool very neatly clipped off the lower left lobe and then it cauterized and stapled the lung and the lobe containing the tumor was pulled out like a little bag containing the tumor and they stitched me up. Although I have had some other tumors develop (single brain mets) that needed to be treated I have has no other tumors develop in the lungs. The recovery wasn't terribly difficult away from being very sore and feeling like I was in a car accident. Your mother in law is pretty young so would probably weather that surgery pretty well. That passed in a week or so and my breathing capacity feels fine.  Hopefully your Oncologist is a melanoma specialist and he or she working with your surgeon will be advising you all as to location and ability to access. I chose to go that surgical route as my (MSK) Oncologist said sometimes a surgical solution early in the tumor development is the best solution. There is another school of thought (in my case I got second opinion from Yale) that said don't remove it and go the immunotherapy PD-1 route so you can monitor the tumor for shrinkage. The issue was if I cut it out I couldn't get the immunotherapy treatment approval as I technically wouldn't have melanoma at that point. I went the surgical solution option but looking back from a more educated position I can see both being viable with the leave it and treat it interesting as Pd-1 is now more accessible. Good luck. 

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