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I Need Your Help! Acral Lentiginous Melanoma

Forums General Melanoma Community I Need Your Help! Acral Lentiginous Melanoma

  • Post
    fucancer44
    Participant

      My name is Emily and I am asking for help regarding my beloved brother in law, Justin. He was diagnosed in January with Acral Lentiginous Melanoma which began on his pinky toe, but had progressed to his groin lymph nodes. He had his toe amputated & the lymph nodes removed and then began Interferon infusions (5 times a week for a month) in May and then subsequently underwent subcutanous interferon injections 3 times weekly. PET scans, MRI, etc… were all clear of any current disease process as of May and everything was going as well as it could when he had another PET scan in August that revealed "2 suspicious spots" on his femur and lower vertebrae. MRI and radiographs confirmed our worst fear and he indeed has 3/4 of an inch lesions on his femur and L2 vertebrae. The oncologist then stopped the interferon injections and we are now 3 weeks out from having nothing done to him. We have been met with a HUGE roadbock because everyone says there are no clinical trials we can get him into because his melanoma is "just in the bone" as if that isn't bad or something. The oncologist wants to put him on Yervoy, but has said that overall when used alone it doesn't always have the best results. I've done tons of research and I know that there are many drugs in clinical trials that are used in CONJUNCTION with Yervoy and have had great results. And just yesterday they FDA approved a new drug, "Keytruda" that typically follows Yervoy treatment and has had great results. Basically we need help. We need a melanoma specialist. Someone who will take this rare type of melanoma seriously and get him the help he so desperately deserves. He is 39 years old and has 4 children (ages 10, 7, 20 months, and 8 months) that he needs to see grow up.  We live in Oklahoma but we will travel ANYWHERE. When he was initially diagnosed we got a second opinion at MD Anderson, but so far we haven't been able to see if going back there a second time would be worth it as they are not saying they can do much at this point. PLEASE help. Any referrals or recommendations would be greatly appreciated. 

      Thank you in advance. 

      God bless every single one of you who rally in this fight against this horrific disease.

    Viewing 11 reply threads
    • Replies
        BrianP
        Participant

          Emily,

          I'm definitely no expert on Acral Lentiginous Melanoma but I believe it's treated similar to cutaneous melanoma.  In my opinion your doctor's statment that "Yervoy doesn't always have the best results" is kinda a glass half empty statement.  Sure we all would like to see the response rates a little better for Yervoy but there are a lot of people that have gotten great responses (and most importantly long lasting responses) from Yervoy.  To me a possible treatment for your brother in law would be to use radiation on the bone mets in conjunction with Yervoy.  There are studies that show this can cause an escopal (sp?) effect.  Essentially the radiation helps trigger an immune response which has a systemic effect even at distant lesions.

          I think Ipi would be a pretty solid option for your brother-in-law also because if he did progress that would enable him to move to the anti-Pd (assuming he's braf negative).

          Having said that Emily, I probably would be looking at combo trials as well.  It not only takes research and hard work to find a trial but also a little luck.  Have you been looking at clinicaltrials.gov?  The filters on the site aren't the best so it's hard to find pertinent trials sometimes.  Most major facilities also list their trials on their website (Dana Farber, Sarah Canon, Moffitt).  I think one obstacle you may have on the trial front is that most trials require at least two tumors.  One they used for biopsies and one they use a reference for how the patient is responding for the treatment.  Not sure how that would work with Justin's bone mets.  May still be possible.

          Good luck

           

          BrianP
          Participant

            Emily,

            I'm definitely no expert on Acral Lentiginous Melanoma but I believe it's treated similar to cutaneous melanoma.  In my opinion your doctor's statment that "Yervoy doesn't always have the best results" is kinda a glass half empty statement.  Sure we all would like to see the response rates a little better for Yervoy but there are a lot of people that have gotten great responses (and most importantly long lasting responses) from Yervoy.  To me a possible treatment for your brother in law would be to use radiation on the bone mets in conjunction with Yervoy.  There are studies that show this can cause an escopal (sp?) effect.  Essentially the radiation helps trigger an immune response which has a systemic effect even at distant lesions.

            I think Ipi would be a pretty solid option for your brother-in-law also because if he did progress that would enable him to move to the anti-Pd (assuming he's braf negative).

            Having said that Emily, I probably would be looking at combo trials as well.  It not only takes research and hard work to find a trial but also a little luck.  Have you been looking at clinicaltrials.gov?  The filters on the site aren't the best so it's hard to find pertinent trials sometimes.  Most major facilities also list their trials on their website (Dana Farber, Sarah Canon, Moffitt).  I think one obstacle you may have on the trial front is that most trials require at least two tumors.  One they used for biopsies and one they use a reference for how the patient is responding for the treatment.  Not sure how that would work with Justin's bone mets.  May still be possible.

            Good luck

             

              Marianne quinn
              Participant

                I really am disturbed by your story. . There are options available. Please get another opinion. Why not radiation in combo with yervoy? This seems to fairly standard treatment. What was the reason justin did not start interferon until May when he was diagnosed in January? There seems to be a lot of delay going on. 

                Marianne quinn
                Participant

                  I really am disturbed by your story. . There are options available. Please get another opinion. Why not radiation in combo with yervoy? This seems to fairly standard treatment. What was the reason justin did not start interferon until May when he was diagnosed in January? There seems to be a lot of delay going on. 

                  Marianne quinn
                  Participant

                    I really am disturbed by your story. . There are options available. Please get another opinion. Why not radiation in combo with yervoy? This seems to fairly standard treatment. What was the reason justin did not start interferon until May when he was diagnosed in January? There seems to be a lot of delay going on. 

                    fucancer44
                    Participant

                      So I forgot to mention that after his first surgery in late January, Justin had wound complications from his lymph node removal and had to have surgery again to debride and take out the infection. Then he was required to wear a wound vac for months and they wouldn't start treatment until he was completely healed because the treatment makes him even more immunosuppressed and they didn't want to increase his chances to develop yet another infection. Hence, the delayed treatment after diagnosis. Very crappy situation. 

                      Our oncologist sent his scans to a radiologist who specializes in oncology images and he determined that at this time radiation was not needed. No one had given us a good reason as to why he shouldn't have radiation other than the fact that his tumors are relatively small (but shouldn't we shrink them now as opposed to when they get bigger??). And they have told us overall that radiation is not super successful in melanoma patients. Again, the reason why we need someone else reliable to go to for a second opinion. We need a Melanoma guru, so to speak, and we are having trouble finding one. 

                      No matter what he will go on the Yervoy. But they haven't started that yet because they are still trying to find him a clinical trial he actually qualifies for (if that exists) because if they start giving the Yervoy now, that could take him out of the running even more for a possible clinical trial. It's a horrible horrible catch 22. 

                      That's why I came here. We need a recommendation of someone to go to so we can get better answers and a treatment plan. 

                      Thank you both for your replies! We are open to any more suggestions.

                      fucancer44
                      Participant

                        So I forgot to mention that after his first surgery in late January, Justin had wound complications from his lymph node removal and had to have surgery again to debride and take out the infection. Then he was required to wear a wound vac for months and they wouldn't start treatment until he was completely healed because the treatment makes him even more immunosuppressed and they didn't want to increase his chances to develop yet another infection. Hence, the delayed treatment after diagnosis. Very crappy situation. 

                        Our oncologist sent his scans to a radiologist who specializes in oncology images and he determined that at this time radiation was not needed. No one had given us a good reason as to why he shouldn't have radiation other than the fact that his tumors are relatively small (but shouldn't we shrink them now as opposed to when they get bigger??). And they have told us overall that radiation is not super successful in melanoma patients. Again, the reason why we need someone else reliable to go to for a second opinion. We need a Melanoma guru, so to speak, and we are having trouble finding one. 

                        No matter what he will go on the Yervoy. But they haven't started that yet because they are still trying to find him a clinical trial he actually qualifies for (if that exists) because if they start giving the Yervoy now, that could take him out of the running even more for a possible clinical trial. It's a horrible horrible catch 22. 

                        That's why I came here. We need a recommendation of someone to go to so we can get better answers and a treatment plan. 

                        Thank you both for your replies! We are open to any more suggestions.

                        fucancer44
                        Participant

                          So I forgot to mention that after his first surgery in late January, Justin had wound complications from his lymph node removal and had to have surgery again to debride and take out the infection. Then he was required to wear a wound vac for months and they wouldn't start treatment until he was completely healed because the treatment makes him even more immunosuppressed and they didn't want to increase his chances to develop yet another infection. Hence, the delayed treatment after diagnosis. Very crappy situation. 

                          Our oncologist sent his scans to a radiologist who specializes in oncology images and he determined that at this time radiation was not needed. No one had given us a good reason as to why he shouldn't have radiation other than the fact that his tumors are relatively small (but shouldn't we shrink them now as opposed to when they get bigger??). And they have told us overall that radiation is not super successful in melanoma patients. Again, the reason why we need someone else reliable to go to for a second opinion. We need a Melanoma guru, so to speak, and we are having trouble finding one. 

                          No matter what he will go on the Yervoy. But they haven't started that yet because they are still trying to find him a clinical trial he actually qualifies for (if that exists) because if they start giving the Yervoy now, that could take him out of the running even more for a possible clinical trial. It's a horrible horrible catch 22. 

                          That's why I came here. We need a recommendation of someone to go to so we can get better answers and a treatment plan. 

                          Thank you both for your replies! We are open to any more suggestions.

                        BrianP
                        Participant

                          Emily,

                          I'm definitely no expert on Acral Lentiginous Melanoma but I believe it's treated similar to cutaneous melanoma.  In my opinion your doctor's statment that "Yervoy doesn't always have the best results" is kinda a glass half empty statement.  Sure we all would like to see the response rates a little better for Yervoy but there are a lot of people that have gotten great responses (and most importantly long lasting responses) from Yervoy.  To me a possible treatment for your brother in law would be to use radiation on the bone mets in conjunction with Yervoy.  There are studies that show this can cause an escopal (sp?) effect.  Essentially the radiation helps trigger an immune response which has a systemic effect even at distant lesions.

                          I think Ipi would be a pretty solid option for your brother-in-law also because if he did progress that would enable him to move to the anti-Pd (assuming he's braf negative).

                          Having said that Emily, I probably would be looking at combo trials as well.  It not only takes research and hard work to find a trial but also a little luck.  Have you been looking at clinicaltrials.gov?  The filters on the site aren't the best so it's hard to find pertinent trials sometimes.  Most major facilities also list their trials on their website (Dana Farber, Sarah Canon, Moffitt).  I think one obstacle you may have on the trial front is that most trials require at least two tumors.  One they used for biopsies and one they use a reference for how the patient is responding for the treatment.  Not sure how that would work with Justin's bone mets.  May still be possible.

                          Good luck

                           

                          BrianP
                          Participant

                            Emily,

                            There are some good Points of Contact on this thread.

                            http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/emails-doctors-metastatic

                             

                            If I could only choose only one I would choose Jeff Weber at Moffitt. Extremely knowledgeable, very straight forward, responsive to emails, and access to some of the best trials at Moffitt.

                            There's a saying I learned in the military when you are planning in a dynamic environment that goes a "Good plan now is better than a perfect plan too late"  I think you all should get the Ipi and radiation plan in place and ready to execute, continue to search for a good trial or better option but have a timeframe in mind that if you don't have another option by a certain date you start the ipi/radiation plan.

                            Brian

                             

                            BrianP
                            Participant

                              Emily,

                              There are some good Points of Contact on this thread.

                              http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/emails-doctors-metastatic

                               

                              If I could only choose only one I would choose Jeff Weber at Moffitt. Extremely knowledgeable, very straight forward, responsive to emails, and access to some of the best trials at Moffitt.

                              There's a saying I learned in the military when you are planning in a dynamic environment that goes a "Good plan now is better than a perfect plan too late"  I think you all should get the Ipi and radiation plan in place and ready to execute, continue to search for a good trial or better option but have a timeframe in mind that if you don't have another option by a certain date you start the ipi/radiation plan.

                              Brian

                               

                              BrianP
                              Participant

                                Emily,

                                There are some good Points of Contact on this thread.

                                http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/emails-doctors-metastatic

                                 

                                If I could only choose only one I would choose Jeff Weber at Moffitt. Extremely knowledgeable, very straight forward, responsive to emails, and access to some of the best trials at Moffitt.

                                There's a saying I learned in the military when you are planning in a dynamic environment that goes a "Good plan now is better than a perfect plan too late"  I think you all should get the Ipi and radiation plan in place and ready to execute, continue to search for a good trial or better option but have a timeframe in mind that if you don't have another option by a certain date you start the ipi/radiation plan.

                                Brian

                                 

                                BrianP
                                Participant

                                  Emily,

                                  There are some good Points of Contact on this thread.

                                  http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/emails-doctors-metastatic

                                   

                                  If I could only choose only one I would choose Jeff Weber at Moffitt. Extremely knowledgeable, very straight forward, responsive to emails, and access to some of the best trials at Moffitt.

                                  There's a saying I learned in the military when you are planning in a dynamic environment that goes a "Good plan now is better than a perfect plan too late"  I think you all should get the Ipi and radiation plan in place and ready to execute, continue to search for a good trial or better option but have a timeframe in mind that if you don't have another option by a certain date you start the ipi/radiation plan.

                                  Brian

                                   

                                    fucancer44
                                    Participant

                                      Thank you so much! I agree wholeheartedly. I will let you know how it goes! 

                                      fucancer44
                                      Participant

                                        Thank you so much! I agree wholeheartedly. I will let you know how it goes! 

                                        fucancer44
                                        Participant

                                          Thank you so much! I agree wholeheartedly. I will let you know how it goes! 

                                        BrianP
                                        Participant

                                          Emily,

                                          There are some good Points of Contact on this thread.

                                          http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/emails-doctors-metastatic

                                           

                                          If I could only choose only one I would choose Jeff Weber at Moffitt. Extremely knowledgeable, very straight forward, responsive to emails, and access to some of the best trials at Moffitt.

                                          There's a saying I learned in the military when you are planning in a dynamic environment that goes a "Good plan now is better than a perfect plan too late"  I think you all should get the Ipi and radiation plan in place and ready to execute, continue to search for a good trial or better option but have a timeframe in mind that if you don't have another option by a certain date you start the ipi/radiation plan.

                                          Brian

                                           

                                          BrianP
                                          Participant

                                            Emily,

                                            There are some good Points of Contact on this thread.

                                            http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/emails-doctors-metastatic

                                             

                                            If I could only choose only one I would choose Jeff Weber at Moffitt. Extremely knowledgeable, very straight forward, responsive to emails, and access to some of the best trials at Moffitt.

                                            There's a saying I learned in the military when you are planning in a dynamic environment that goes a "Good plan now is better than a perfect plan too late"  I think you all should get the Ipi and radiation plan in place and ready to execute, continue to search for a good trial or better option but have a timeframe in mind that if you don't have another option by a certain date you start the ipi/radiation plan.

                                            Brian

                                             

                                            JerryfromFauq
                                            Participant

                                              Either IL-2, Ipi (yervoy) or anti-PD-1 stand a chance of helping and possibly stoping the melanoma in ones bones.  i have known of cases where IL-2, given by extremely experienced Oncologists have cured people with melanoma includiong ones with bone mets. (I would not be alive today if not for IL-2.(

                                              JerryfromFauq
                                              Participant

                                                Either IL-2, Ipi (yervoy) or anti-PD-1 stand a chance of helping and possibly stoping the melanoma in ones bones.  i have known of cases where IL-2, given by extremely experienced Oncologists have cured people with melanoma includiong ones with bone mets. (I would not be alive today if not for IL-2.(

                                                JerryfromFauq
                                                Participant

                                                  Either IL-2, Ipi (yervoy) or anti-PD-1 stand a chance of helping and possibly stoping the melanoma in ones bones.  i have known of cases where IL-2, given by extremely experienced Oncologists have cured people with melanoma includiong ones with bone mets. (I would not be alive today if not for IL-2.(

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