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From NED to Stage IV in 6 months???

Forums General Melanoma Community From NED to Stage IV in 6 months???

  • Post
    ABELL
    Participant

      Hello,

      My best friend, co-worker, second mother, all of the above has been diagnosed with Stage IV. First diagsosis was about 8 years ago, removed melanoma on neck, no radiation needed.

      Recurrence happened in 11/13. Same spot on neck, this time it had spread to some lymph nodes. They removed the tumor, some muscle, partial thyroidectomy & some lymph nodes.

      After surgery and radiation, PET scan showed NED.

      6 month PET scan was scheduled for 7/26- day after my wedding. She went to scan appointment and was scheduled to hear the results by the next tuesday.

      Monday night after work, she said she didn't feel well. Nauseous. She had a seizure about 9:30pm and was rushed to emergency.

      They did a CT scan (she hit her head, needed stiched and had slight concussion).

      The melanoma had metastasized to her brain, 2 tumors in her frontal lobe, her spine, liver and lung.

      IN 6 MONTHS!?!?!

      They are doing radiation to her spine, Cyberknife to her brain & I believe biochemotherepy for her liver & lung. She is on steriods & anti-anxiety meds. They told her she has a year.

      Anyone familiar with this? I have been obsessed with the internet finding horrible stories & statistics. NO CURE, POOR QUALITY OF LIFE, LIFE EXPECTANCYS OF 2-4 MONTHS!!!!!

      Life is upside down, how do you get past the gloom and doom & look for a light at the end of the tunnel for her?

      Any stories, suggestions & help would be appreciated. Thank you!

      ~A

       

       

    Viewing 8 reply threads
    • Replies
        Janner
        Participant

          Where is she being treated?  She needs a melanoma specialist.  Biochemotherapy isn't one of the newer treatment options used for melanoma.  There are newer drugs approved in the last few years that have better response rates than biochemo.  The first step is making sure she is seeing a melanoma specialist.  If not, get her to one.  If that isn't practical, then definitely at least a phone consult either separately or thru her current oncologist.  There are other options besides biochemo.  Clinical trials are also an option if her brain mets get treated.  Many trials disqualify with untreated/unstable brain mets.  See a specialist!

          Just a FYI, a PET scan doesn't pick up small amounts of disease.  So even if her PET scan was clean 6 months ago, that doesn't mean there wasn't any disease then.  PET scans can only show tumors when they get to a certain size.  Same with other types of scans.  So back then, there were no tumors of significant size to show up on the PET.

          Ignore prognosis, everyone is different.  Treatments are new for melanoma and more are on the way.  There is no "historical" data anymore because new treatment options have been out less than 5 years.

          Janner
          Participant

            Where is she being treated?  She needs a melanoma specialist.  Biochemotherapy isn't one of the newer treatment options used for melanoma.  There are newer drugs approved in the last few years that have better response rates than biochemo.  The first step is making sure she is seeing a melanoma specialist.  If not, get her to one.  If that isn't practical, then definitely at least a phone consult either separately or thru her current oncologist.  There are other options besides biochemo.  Clinical trials are also an option if her brain mets get treated.  Many trials disqualify with untreated/unstable brain mets.  See a specialist!

            Just a FYI, a PET scan doesn't pick up small amounts of disease.  So even if her PET scan was clean 6 months ago, that doesn't mean there wasn't any disease then.  PET scans can only show tumors when they get to a certain size.  Same with other types of scans.  So back then, there were no tumors of significant size to show up on the PET.

            Ignore prognosis, everyone is different.  Treatments are new for melanoma and more are on the way.  There is no "historical" data anymore because new treatment options have been out less than 5 years.

              ABELL
              Participant

                Thanks for your response!

                She is being treated at Kaiser in SSF, CA. It's just really hard to try and make suggestions of these types to her. She is pretty much in a fog from all the drugs, treatments, etc.

                ~A

                kylez
                Participant

                  I'd strongly suggest she get a second opinion up the 101 from Drs.  Daud or Algazi at UCSF. It's what I did in 2010 when I was at Kaiser Oakland. Dr. Algazi steered me away from biochemo. 

                  Also, I'm now seen at UCSF (ins. change)

                  ABELL
                  Participant

                    Hello,

                    Thank you for the referral! I went onto UCSF's site and found that you can actually EMAIL THE DOCTORS! So awesome! I am trying to give this information to my friend as gently and compassionately as possible. I appreciate your feedback!!!

                    ABELL
                    Participant

                      Hello,

                      Thank you for the referral! I went onto UCSF's site and found that you can actually EMAIL THE DOCTORS! So awesome! I am trying to give this information to my friend as gently and compassionately as possible. I appreciate your feedback!!!

                      ABELL
                      Participant

                        Hello,

                        Thank you for the referral! I went onto UCSF's site and found that you can actually EMAIL THE DOCTORS! So awesome! I am trying to give this information to my friend as gently and compassionately as possible. I appreciate your feedback!!!

                        kylez
                        Participant

                          I'd strongly suggest she get a second opinion up the 101 from Drs.  Daud or Algazi at UCSF. It's what I did in 2010 when I was at Kaiser Oakland. Dr. Algazi steered me away from biochemo. 

                          Also, I'm now seen at UCSF (ins. change)

                          kylez
                          Participant

                            I'd strongly suggest she get a second opinion up the 101 from Drs.  Daud or Algazi at UCSF. It's what I did in 2010 when I was at Kaiser Oakland. Dr. Algazi steered me away from biochemo. 

                            Also, I'm now seen at UCSF (ins. change)

                            Janner
                            Participant

                              Kaiser doesn't have melanoma specialists in CA or if they do, there is only one.  However, I think he might have been in the SF area.   (Do a search on this site for Kaiser and I bet you'll find references – it's been discussed before.  Many go out of network if they can get their onc to refer them).  Make her ask about Zelboraf or a BRAF inhibitor treatment.  Has she been tested for BRAF?  Also ask about Yervoy.  Biochemo is OLD, rough, and doesn't have great numbers.  Some still use that when newer options don't work, but it wouldn't be my first choice of treatments.  If I were to try and older therapy, it would be IL-2 because it at least has people who have a durable response. 

                              Someone else needs to go to her appointments with her and bring up other ideas for treatment!  Or going to a melanoma specialist!  Kaiser and melanoma are not a good match in California, because Kaiser doesn't have specialists that support the new drugs and clinical trials available.  I'd at least ask to get a second opinion at UCSF!

                              Janner
                              Participant

                                Kaiser doesn't have melanoma specialists in CA or if they do, there is only one.  However, I think he might have been in the SF area.   (Do a search on this site for Kaiser and I bet you'll find references – it's been discussed before.  Many go out of network if they can get their onc to refer them).  Make her ask about Zelboraf or a BRAF inhibitor treatment.  Has she been tested for BRAF?  Also ask about Yervoy.  Biochemo is OLD, rough, and doesn't have great numbers.  Some still use that when newer options don't work, but it wouldn't be my first choice of treatments.  If I were to try and older therapy, it would be IL-2 because it at least has people who have a durable response. 

                                Someone else needs to go to her appointments with her and bring up other ideas for treatment!  Or going to a melanoma specialist!  Kaiser and melanoma are not a good match in California, because Kaiser doesn't have specialists that support the new drugs and clinical trials available.  I'd at least ask to get a second opinion at UCSF!

                                ABELL
                                Participant

                                  Hello Janner,

                                  Again, thanks for the response! I'm trying to lightly broach the subject of these ideas you have all given me. I'm hoping once the initial shock wears off, she will be aggressive in her treatment options…

                                   

                                   

                                  ABELL
                                  Participant

                                    Hello Janner,

                                    Again, thanks for the response! I'm trying to lightly broach the subject of these ideas you have all given me. I'm hoping once the initial shock wears off, she will be aggressive in her treatment options…

                                     

                                     

                                    ABELL
                                    Participant

                                      Hello Janner,

                                      Again, thanks for the response! I'm trying to lightly broach the subject of these ideas you have all given me. I'm hoping once the initial shock wears off, she will be aggressive in her treatment options…

                                       

                                       

                                      Janner
                                      Participant

                                        Kaiser doesn't have melanoma specialists in CA or if they do, there is only one.  However, I think he might have been in the SF area.   (Do a search on this site for Kaiser and I bet you'll find references – it's been discussed before.  Many go out of network if they can get their onc to refer them).  Make her ask about Zelboraf or a BRAF inhibitor treatment.  Has she been tested for BRAF?  Also ask about Yervoy.  Biochemo is OLD, rough, and doesn't have great numbers.  Some still use that when newer options don't work, but it wouldn't be my first choice of treatments.  If I were to try and older therapy, it would be IL-2 because it at least has people who have a durable response. 

                                        Someone else needs to go to her appointments with her and bring up other ideas for treatment!  Or going to a melanoma specialist!  Kaiser and melanoma are not a good match in California, because Kaiser doesn't have specialists that support the new drugs and clinical trials available.  I'd at least ask to get a second opinion at UCSF!

                                        ABELL
                                        Participant

                                          Thanks for your response!

                                          She is being treated at Kaiser in SSF, CA. It's just really hard to try and make suggestions of these types to her. She is pretty much in a fog from all the drugs, treatments, etc.

                                          ~A

                                          ABELL
                                          Participant

                                            Thanks for your response!

                                            She is being treated at Kaiser in SSF, CA. It's just really hard to try and make suggestions of these types to her. She is pretty much in a fog from all the drugs, treatments, etc.

                                            ~A

                                          Janner
                                          Participant

                                            Where is she being treated?  She needs a melanoma specialist.  Biochemotherapy isn't one of the newer treatment options used for melanoma.  There are newer drugs approved in the last few years that have better response rates than biochemo.  The first step is making sure she is seeing a melanoma specialist.  If not, get her to one.  If that isn't practical, then definitely at least a phone consult either separately or thru her current oncologist.  There are other options besides biochemo.  Clinical trials are also an option if her brain mets get treated.  Many trials disqualify with untreated/unstable brain mets.  See a specialist!

                                            Just a FYI, a PET scan doesn't pick up small amounts of disease.  So even if her PET scan was clean 6 months ago, that doesn't mean there wasn't any disease then.  PET scans can only show tumors when they get to a certain size.  Same with other types of scans.  So back then, there were no tumors of significant size to show up on the PET.

                                            Ignore prognosis, everyone is different.  Treatments are new for melanoma and more are on the way.  There is no "historical" data anymore because new treatment options have been out less than 5 years.

                                            arthurjedi007
                                            Participant

                                              Yes. Definitely needs a melanoma specialist. Also ignore all that old data on the internet. It is way out of date. This and it's international version is the best place for melanoma. When I first got this I searched like crazy. This is the best source.

                                              I've been fighting this stuff at stage 4 since june 21 2013. There are lots and lots of people on here that have had it for years and years and doing pretty good.

                                              The FDA approved medicines are Yervoy which is the first of the immunotherapies. Merck and BMS PD1 immunotherapies are still in clinical trials but getting close to the FDA. Many other clinical trials combine these with other things. Also many other clinical trials.

                                              If your friend tests BRAF positive there is the FDA approved tafinlar/mekenist combo. Also the little older FDA approved zelboraf but I would do the combo instead. BRAF is a specific gene mutation but usually it seems better to save these unless you need a rapid result. Which it sounds like your friend might. There are some other gene type things in clinical trials.

                                              Depending on where you are there are lots of good melanoma specialists. In the SE I would go to Moffit. In the NE I would go to MSK. In the West I would go to the LA or Beverly Hills clinic.

                                              So yes there is hope and lots of it.

                                              http://www.clinicaltrials.gov lists all the trials.

                                              Here's one of the members blog that has lots more info:

                                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

                                               

                                              Artie

                                               

                                              arthurjedi007
                                              Participant

                                                Yes. Definitely needs a melanoma specialist. Also ignore all that old data on the internet. It is way out of date. This and it's international version is the best place for melanoma. When I first got this I searched like crazy. This is the best source.

                                                I've been fighting this stuff at stage 4 since june 21 2013. There are lots and lots of people on here that have had it for years and years and doing pretty good.

                                                The FDA approved medicines are Yervoy which is the first of the immunotherapies. Merck and BMS PD1 immunotherapies are still in clinical trials but getting close to the FDA. Many other clinical trials combine these with other things. Also many other clinical trials.

                                                If your friend tests BRAF positive there is the FDA approved tafinlar/mekenist combo. Also the little older FDA approved zelboraf but I would do the combo instead. BRAF is a specific gene mutation but usually it seems better to save these unless you need a rapid result. Which it sounds like your friend might. There are some other gene type things in clinical trials.

                                                Depending on where you are there are lots of good melanoma specialists. In the SE I would go to Moffit. In the NE I would go to MSK. In the West I would go to the LA or Beverly Hills clinic.

                                                So yes there is hope and lots of it.

                                                http://www.clinicaltrials.gov lists all the trials.

                                                Here's one of the members blog that has lots more info:

                                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

                                                 

                                                Artie

                                                 

                                                  ABELL
                                                  Participant

                                                    Thank you all so much, I have forwarded her this link so she can read what you all have wrote. She is understandably very confused and scared. I think the biggest step right now will be to investigate other potential avenues for her. Do you suggest just calling up UCSF? Does Kaiser pay for this? Do they transfer records? What exactly is the starting conversation to try and get her seen?

                                                    Thanks again for all your help.

                                                     

                                                    ~A

                                                    ABELL
                                                    Participant

                                                      Thank you all so much, I have forwarded her this link so she can read what you all have wrote. She is understandably very confused and scared. I think the biggest step right now will be to investigate other potential avenues for her. Do you suggest just calling up UCSF? Does Kaiser pay for this? Do they transfer records? What exactly is the starting conversation to try and get her seen?

                                                      Thanks again for all your help.

                                                       

                                                      ~A

                                                      Becky
                                                      Participant

                                                        We also have Kaiser in the Bay Area. They paid for a second opinion for my son ( but it was done at Stanford, I would recommend ucsf) but he got treatment (interferon) at Kaiser.

                                                        My other son who has epilepsy had a work up for possible surgery with ucsf which Kaiser paid for.

                                                        i have a friend with breast cancer who also has Kaiser and got them to pay for her to go to ucsf and be involved at a clinical trial there. She also had surgery done at UCSF but I think that took a little fighting with Kaiser. With Kaiser a lot depends on the doctor as far as what will be approved. 

                                                        Good luck to your friend 

                                                        Becky
                                                        Participant

                                                          We also have Kaiser in the Bay Area. They paid for a second opinion for my son ( but it was done at Stanford, I would recommend ucsf) but he got treatment (interferon) at Kaiser.

                                                          My other son who has epilepsy had a work up for possible surgery with ucsf which Kaiser paid for.

                                                          i have a friend with breast cancer who also has Kaiser and got them to pay for her to go to ucsf and be involved at a clinical trial there. She also had surgery done at UCSF but I think that took a little fighting with Kaiser. With Kaiser a lot depends on the doctor as far as what will be approved. 

                                                          Good luck to your friend 

                                                          Becky
                                                          Participant

                                                            We also have Kaiser in the Bay Area. They paid for a second opinion for my son ( but it was done at Stanford, I would recommend ucsf) but he got treatment (interferon) at Kaiser.

                                                            My other son who has epilepsy had a work up for possible surgery with ucsf which Kaiser paid for.

                                                            i have a friend with breast cancer who also has Kaiser and got them to pay for her to go to ucsf and be involved at a clinical trial there. She also had surgery done at UCSF but I think that took a little fighting with Kaiser. With Kaiser a lot depends on the doctor as far as what will be approved. 

                                                            Good luck to your friend 

                                                            ABELL
                                                            Participant

                                                              Thank you all so much, I have forwarded her this link so she can read what you all have wrote. She is understandably very confused and scared. I think the biggest step right now will be to investigate other potential avenues for her. Do you suggest just calling up UCSF? Does Kaiser pay for this? Do they transfer records? What exactly is the starting conversation to try and get her seen?

                                                              Thanks again for all your help.

                                                               

                                                              ~A

                                                              delora
                                                              Participant

                                                                Great post Artie and great advice.

                                                                My story is similar although not as severe.  Please find a melanoma specialist, even if you have to drive.  I had melanoma 14 years ago with a reoccurrence last fall.  After a clear PET scan in January, I now have Stage IV as well.

                                                                I see a team at Duke and am currently in a clinical trial.  This is one reason that a specialist is so important.  We also have Plan B and Plan C in place if the trial does not work.

                                                                The internet provides some good information, but Artie is right when he says that there is a lot of outdated information out there.  Positive things are happening with treatments for melanoma.

                                                                I also just found out that I was positive for the BRAF mutation.  My previous Dr never even mentioned it.; another reason for a second opinion.

                                                                You sound like a great friend.

                                                                Delora

                                                                Marianne quinn
                                                                Participant

                                                                  My husband has kaiser also.. He was diagnosed at stage3C and was in the interferon vs ipi clinical trial at kaiser Roseville. He managed the side effects of the 10 mg ipi arm, but a small mets in his liver was found by the CAT scan taken after the induction phase in March 2014. He had ablation done by a hepatic surgeon and a intervention  radiologist at kaiser Oakland. Both doctors were great. He is now NED. Anxious about scan next month. Kaiser removed him from the trial.

                                                                  We also asked to see a melanoma specialist but were told only if we paid for it. I think it is ridiculous that kaiser does not have a melanoma specialist.'kaiser in Sacramento was just awarded a 7 million dollar grant for cancer research. Does anyone have any ideas how we can advocate for kaiser's melanoma patients? Although we are generally pleased with kaiser, I think the oncologists need an expert to consult with. There is too much happening and our melanoma patients and families are getting short changed.  Ideas anyone? We need to mobilize!

                                                                  Marianne quinn
                                                                  Participant

                                                                    My husband has kaiser also.. He was diagnosed at stage3C and was in the interferon vs ipi clinical trial at kaiser Roseville. He managed the side effects of the 10 mg ipi arm, but a small mets in his liver was found by the CAT scan taken after the induction phase in March 2014. He had ablation done by a hepatic surgeon and a intervention  radiologist at kaiser Oakland. Both doctors were great. He is now NED. Anxious about scan next month. Kaiser removed him from the trial.

                                                                    We also asked to see a melanoma specialist but were told only if we paid for it. I think it is ridiculous that kaiser does not have a melanoma specialist.'kaiser in Sacramento was just awarded a 7 million dollar grant for cancer research. Does anyone have any ideas how we can advocate for kaiser's melanoma patients? Although we are generally pleased with kaiser, I think the oncologists need an expert to consult with. There is too much happening and our melanoma patients and families are getting short changed.  Ideas anyone? We need to mobilize!

                                                                    Marianne quinn
                                                                    Participant

                                                                      My husband has kaiser also.. He was diagnosed at stage3C and was in the interferon vs ipi clinical trial at kaiser Roseville. He managed the side effects of the 10 mg ipi arm, but a small mets in his liver was found by the CAT scan taken after the induction phase in March 2014. He had ablation done by a hepatic surgeon and a intervention  radiologist at kaiser Oakland. Both doctors were great. He is now NED. Anxious about scan next month. Kaiser removed him from the trial.

                                                                      We also asked to see a melanoma specialist but were told only if we paid for it. I think it is ridiculous that kaiser does not have a melanoma specialist.'kaiser in Sacramento was just awarded a 7 million dollar grant for cancer research. Does anyone have any ideas how we can advocate for kaiser's melanoma patients? Although we are generally pleased with kaiser, I think the oncologists need an expert to consult with. There is too much happening and our melanoma patients and families are getting short changed.  Ideas anyone? We need to mobilize!

                                                                      ABELL
                                                                      Participant

                                                                        Hi Marianne,

                                                                        Thank you for sharing your story! Any little bits of information help… And you are totally right! I was shocked when I learned there was no specialist at Kaiser for my friend to see, especially since my Mom and Mother-in-Law have both work at Kaiser for 10+ years & are very pro-kaiser. I have always thought Kaiser had such a great range of doctors (from my once a year check up experience!). I would like to be of any help in advocating a change in Kaiser's policy's about referring patients to see a specialist in another location and/or having a specialist on site!!!!

                                                                        ABELL
                                                                        Participant

                                                                          Hi Marianne,

                                                                          Thank you for sharing your story! Any little bits of information help… And you are totally right! I was shocked when I learned there was no specialist at Kaiser for my friend to see, especially since my Mom and Mother-in-Law have both work at Kaiser for 10+ years & are very pro-kaiser. I have always thought Kaiser had such a great range of doctors (from my once a year check up experience!). I would like to be of any help in advocating a change in Kaiser's policy's about referring patients to see a specialist in another location and/or having a specialist on site!!!!

                                                                          ABELL
                                                                          Participant

                                                                            Hi Marianne,

                                                                            Thank you for sharing your story! Any little bits of information help… And you are totally right! I was shocked when I learned there was no specialist at Kaiser for my friend to see, especially since my Mom and Mother-in-Law have both work at Kaiser for 10+ years & are very pro-kaiser. I have always thought Kaiser had such a great range of doctors (from my once a year check up experience!). I would like to be of any help in advocating a change in Kaiser's policy's about referring patients to see a specialist in another location and/or having a specialist on site!!!!

                                                                            Becky
                                                                            Participant

                                                                              I think part of the problem with Kaiser ( and I am also pro kaiser and have had good experiences.) is that specialists are more likely to be at research hospitals, which Kaiser is not. Especially with melanoma where so much relies on research and clinical trials. I would be happy though if Kaiser would refer out to a specialist for treatment if they have none. 

                                                                              Becky
                                                                              Participant

                                                                                I think part of the problem with Kaiser ( and I am also pro kaiser and have had good experiences.) is that specialists are more likely to be at research hospitals, which Kaiser is not. Especially with melanoma where so much relies on research and clinical trials. I would be happy though if Kaiser would refer out to a specialist for treatment if they have none. 

                                                                                Becky
                                                                                Participant

                                                                                  I think part of the problem with Kaiser ( and I am also pro kaiser and have had good experiences.) is that specialists are more likely to be at research hospitals, which Kaiser is not. Especially with melanoma where so much relies on research and clinical trials. I would be happy though if Kaiser would refer out to a specialist for treatment if they have none. 

                                                                                  ABELL
                                                                                  Participant

                                                                                    Hello Delora,

                                                                                    Thank you as well for sharing your story, I really appreciate the support I have recieved from this site! Artie's post really helped me as well, he had a lot of great information. I really hope all these posts really encourage my friend to start fighting, start asking questions and start demanding some answers. Knowledge really is power when it comes to any disease… you can't fight or win without drive and determination & a great team of coaches. Thank you all so much, you keep hope alive in so many people.

                                                                                    ABELL
                                                                                    Participant

                                                                                      Hello Delora,

                                                                                      Thank you as well for sharing your story, I really appreciate the support I have recieved from this site! Artie's post really helped me as well, he had a lot of great information. I really hope all these posts really encourage my friend to start fighting, start asking questions and start demanding some answers. Knowledge really is power when it comes to any disease… you can't fight or win without drive and determination & a great team of coaches. Thank you all so much, you keep hope alive in so many people.

                                                                                      ABELL
                                                                                      Participant

                                                                                        Hello Delora,

                                                                                        Thank you as well for sharing your story, I really appreciate the support I have recieved from this site! Artie's post really helped me as well, he had a lot of great information. I really hope all these posts really encourage my friend to start fighting, start asking questions and start demanding some answers. Knowledge really is power when it comes to any disease… you can't fight or win without drive and determination & a great team of coaches. Thank you all so much, you keep hope alive in so many people.

                                                                                        delora
                                                                                        Participant

                                                                                          Great post Artie and great advice.

                                                                                          My story is similar although not as severe.  Please find a melanoma specialist, even if you have to drive.  I had melanoma 14 years ago with a reoccurrence last fall.  After a clear PET scan in January, I now have Stage IV as well.

                                                                                          I see a team at Duke and am currently in a clinical trial.  This is one reason that a specialist is so important.  We also have Plan B and Plan C in place if the trial does not work.

                                                                                          The internet provides some good information, but Artie is right when he says that there is a lot of outdated information out there.  Positive things are happening with treatments for melanoma.

                                                                                          I also just found out that I was positive for the BRAF mutation.  My previous Dr never even mentioned it.; another reason for a second opinion.

                                                                                          You sound like a great friend.

                                                                                          Delora

                                                                                          delora
                                                                                          Participant

                                                                                            Great post Artie and great advice.

                                                                                            My story is similar although not as severe.  Please find a melanoma specialist, even if you have to drive.  I had melanoma 14 years ago with a reoccurrence last fall.  After a clear PET scan in January, I now have Stage IV as well.

                                                                                            I see a team at Duke and am currently in a clinical trial.  This is one reason that a specialist is so important.  We also have Plan B and Plan C in place if the trial does not work.

                                                                                            The internet provides some good information, but Artie is right when he says that there is a lot of outdated information out there.  Positive things are happening with treatments for melanoma.

                                                                                            I also just found out that I was positive for the BRAF mutation.  My previous Dr never even mentioned it.; another reason for a second opinion.

                                                                                            You sound like a great friend.

                                                                                            Delora

                                                                                          arthurjedi007
                                                                                          Participant

                                                                                            Yes. Definitely needs a melanoma specialist. Also ignore all that old data on the internet. It is way out of date. This and it's international version is the best place for melanoma. When I first got this I searched like crazy. This is the best source.

                                                                                            I've been fighting this stuff at stage 4 since june 21 2013. There are lots and lots of people on here that have had it for years and years and doing pretty good.

                                                                                            The FDA approved medicines are Yervoy which is the first of the immunotherapies. Merck and BMS PD1 immunotherapies are still in clinical trials but getting close to the FDA. Many other clinical trials combine these with other things. Also many other clinical trials.

                                                                                            If your friend tests BRAF positive there is the FDA approved tafinlar/mekenist combo. Also the little older FDA approved zelboraf but I would do the combo instead. BRAF is a specific gene mutation but usually it seems better to save these unless you need a rapid result. Which it sounds like your friend might. There are some other gene type things in clinical trials.

                                                                                            Depending on where you are there are lots of good melanoma specialists. In the SE I would go to Moffit. In the NE I would go to MSK. In the West I would go to the LA or Beverly Hills clinic.

                                                                                            So yes there is hope and lots of it.

                                                                                            http://www.clinicaltrials.gov lists all the trials.

                                                                                            Here's one of the members blog that has lots more info:

                                                                                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

                                                                                             

                                                                                            Artie

                                                                                             

                                                                                            JerryfromFauq
                                                                                            Participant

                                                                                              Others above have given you great advice, so I'll just address the NO CURE, POOR QUALITY OF LIFE, LIFE EXPECTANCYS OF 2-4 MONTHS!!!!!

                                                                                              YEP, I read all those same things when Afater 3 1/2  years of misdiagnosis by my OLD GP, I was told I was Clear of melanoma as of early Oct 2006 by a local general surgeon.  I was Stage Iv with innumerable tumors in Feb 2007.  A general Oncologist then gave me 30-180 days for my wife becoming a widow.  NOPE, I'm not cured, not even NED (No Evidence of Disease – on scans) I got to some great specialists at the Univ of Va that listened to me and worked with me and have had numerous more grandkids and greatgrndkids since then.  Don't give up.  Others above have given you great advice, so I'll just address the NO CURE, POOR QUALITY OF LIFE, LIFE EXPECTANCYS OF 2-4 MONTHS!!!!!    

                                                                                              NOT NED, BUT NOT DEAD!

                                                                                               

                                                                                              JerryfromFauq
                                                                                              Participant

                                                                                                Others above have given you great advice, so I'll just address the NO CURE, POOR QUALITY OF LIFE, LIFE EXPECTANCYS OF 2-4 MONTHS!!!!!

                                                                                                YEP, I read all those same things when Afater 3 1/2  years of misdiagnosis by my OLD GP, I was told I was Clear of melanoma as of early Oct 2006 by a local general surgeon.  I was Stage Iv with innumerable tumors in Feb 2007.  A general Oncologist then gave me 30-180 days for my wife becoming a widow.  NOPE, I'm not cured, not even NED (No Evidence of Disease – on scans) I got to some great specialists at the Univ of Va that listened to me and worked with me and have had numerous more grandkids and greatgrndkids since then.  Don't give up.  Others above have given you great advice, so I'll just address the NO CURE, POOR QUALITY OF LIFE, LIFE EXPECTANCYS OF 2-4 MONTHS!!!!!    

                                                                                                NOT NED, BUT NOT DEAD!

                                                                                                 

                                                                                                JerryfromFauq
                                                                                                Participant

                                                                                                  Others above have given you great advice, so I'll just address the NO CURE, POOR QUALITY OF LIFE, LIFE EXPECTANCYS OF 2-4 MONTHS!!!!!

                                                                                                  YEP, I read all those same things when Afater 3 1/2  years of misdiagnosis by my OLD GP, I was told I was Clear of melanoma as of early Oct 2006 by a local general surgeon.  I was Stage Iv with innumerable tumors in Feb 2007.  A general Oncologist then gave me 30-180 days for my wife becoming a widow.  NOPE, I'm not cured, not even NED (No Evidence of Disease – on scans) I got to some great specialists at the Univ of Va that listened to me and worked with me and have had numerous more grandkids and greatgrndkids since then.  Don't give up.  Others above have given you great advice, so I'll just address the NO CURE, POOR QUALITY OF LIFE, LIFE EXPECTANCYS OF 2-4 MONTHS!!!!!    

                                                                                                  NOT NED, BUT NOT DEAD!

                                                                                                   

                                                                                                    lou2
                                                                                                    Participant

                                                                                                      Probably many here know this already, but in some states the state insurance commissioner can intervene in disputes between insurers and patients.  Seems like lack of melanoma specialist in a big netwok like Kaiser would be the kind of thing the commissioner might be interested in.

                                                                                                      lou2
                                                                                                      Participant

                                                                                                        Probably many here know this already, but in some states the state insurance commissioner can intervene in disputes between insurers and patients.  Seems like lack of melanoma specialist in a big netwok like Kaiser would be the kind of thing the commissioner might be interested in.

                                                                                                        lou2
                                                                                                        Participant

                                                                                                          Probably many here know this already, but in some states the state insurance commissioner can intervene in disputes between insurers and patients.  Seems like lack of melanoma specialist in a big netwok like Kaiser would be the kind of thing the commissioner might be interested in.

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