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acral lentiginous melanoma

Forums General Melanoma Community acral lentiginous melanoma

  • Post
    noisy77
    Participant

      Hello – 

      Just wondering if anyone has acral lentiginous melanoma ?  How did you approach treatment? 

      My mom has stage 3c acral lentiginous melanoma of the big toe.  She just completed radiation of the groin and curious to how others approached.

      Thank you.

       

      Elizabeth

      Hello – 

      Just wondering if anyone has acral lentiginous melanoma ?  How did you approach treatment? 

      My mom has stage 3c acral lentiginous melanoma of the big toe.  She just completed radiation of the groin and curious to how others approached.

      Thank you.

       

      Elizabeth

    Viewing 8 reply threads
    • Replies
        janward
        Participant

          Hi,

          I was diagnosed with acral lentiginous melanoma October 2010.  It was in my left thumb which was amputated; the melanoma had gone to the lymph nodes under my left armpit and those nodes were removed.  I was pronounced cancer free.  Six months later, lesions started showing up in my left lung and in July 2011 and after a biopsy, was found to have cancer in my lung.  I had Avastin and Temodar for two months and the cancer grew in my left lung and was also found in three other places . February 2012 I started Yervoy Ipilimumab) infusions.  I was able to tolerate all four infusions.  This drug targets the immune system which in turn targets the cancer.  Yervoy has a lot of side effects and I did end up with significant neuropathy in my feet and hands.  I will probably be taking systemic corticoscosteriods to help with the immune-medicated neuropathy.  I, too, was at stage 3 when the acral lentiginous melanoma was diagnosed, and am now stage 4.  Hope this helps.  Good luck

          janward
          Participant

            Hi,

            I was diagnosed with acral lentiginous melanoma October 2010.  It was in my left thumb which was amputated; the melanoma had gone to the lymph nodes under my left armpit and those nodes were removed.  I was pronounced cancer free.  Six months later, lesions started showing up in my left lung and in July 2011 and after a biopsy, was found to have cancer in my lung.  I had Avastin and Temodar for two months and the cancer grew in my left lung and was also found in three other places . February 2012 I started Yervoy Ipilimumab) infusions.  I was able to tolerate all four infusions.  This drug targets the immune system which in turn targets the cancer.  Yervoy has a lot of side effects and I did end up with significant neuropathy in my feet and hands.  I will probably be taking systemic corticoscosteriods to help with the immune-medicated neuropathy.  I, too, was at stage 3 when the acral lentiginous melanoma was diagnosed, and am now stage 4.  Hope this helps.  Good luck

            janward
            Participant

              Hi,

              I was diagnosed with acral lentiginous melanoma October 2010.  It was in my left thumb which was amputated; the melanoma had gone to the lymph nodes under my left armpit and those nodes were removed.  I was pronounced cancer free.  Six months later, lesions started showing up in my left lung and in July 2011 and after a biopsy, was found to have cancer in my lung.  I had Avastin and Temodar for two months and the cancer grew in my left lung and was also found in three other places . February 2012 I started Yervoy Ipilimumab) infusions.  I was able to tolerate all four infusions.  This drug targets the immune system which in turn targets the cancer.  Yervoy has a lot of side effects and I did end up with significant neuropathy in my feet and hands.  I will probably be taking systemic corticoscosteriods to help with the immune-medicated neuropathy.  I, too, was at stage 3 when the acral lentiginous melanoma was diagnosed, and am now stage 4.  Hope this helps.  Good luck

                noisy77
                Participant

                  Thanks for the response.  I hadn't heard of Avastin and Temodar (never heard the doctors mention) so I am looking into.  Melanoma sucks.

                  noisy77
                  Participant

                    Thanks for the response.  I hadn't heard of Avastin and Temodar (never heard the doctors mention) so I am looking into.  Melanoma sucks.

                    noisy77
                    Participant

                      Thanks for the response.  I hadn't heard of Avastin and Temodar (never heard the doctors mention) so I am looking into.  Melanoma sucks.

                      cwu
                      Participant

                        Temodar is chemo that is similar to decarbazine or DTIC.  Temodar is usually used for those with brain tumors since it crosses the brain-blood barrier.  When we considered our options, our oncologist didnt recommend decarbazine because the response rates is very low (about 15-20%) and it is not long lasting (about 6 months on average).

                        cwu
                        Participant

                          Temodar is chemo that is similar to decarbazine or DTIC.  Temodar is usually used for those with brain tumors since it crosses the brain-blood barrier.  When we considered our options, our oncologist didnt recommend decarbazine because the response rates is very low (about 15-20%) and it is not long lasting (about 6 months on average).

                          cwu
                          Participant

                            Temodar is chemo that is similar to decarbazine or DTIC.  Temodar is usually used for those with brain tumors since it crosses the brain-blood barrier.  When we considered our options, our oncologist didnt recommend decarbazine because the response rates is very low (about 15-20%) and it is not long lasting (about 6 months on average).

                            noisy77
                            Participant

                              Thanks for the response.  I hadn't heard of Avastin and Temodar (never heard the doctors mention) so I am looking into.  Melanoma sucks.

                              noisy77
                              Participant

                                Thanks for the response.  I hadn't heard of Avastin and Temodar (never heard the doctors mention) so I am looking into.  Melanoma sucks.

                                noisy77
                                Participant

                                  Thanks for the response.  I hadn't heard of Avastin and Temodar (never heard the doctors mention) so I am looking into.  Melanoma sucks.

                                susanr
                                Participant

                                  Hi Elizabeth,

                                  We have a similar case.  My brother was dx. 2/2009.  Stage 3A. nasty presentation.  left foot, ulcerated.  Was sat on for a few months being treated for foot wound, diabetes work up.  after his SLN bx. had micro mets., then lymph node dissection of the groin, about year later had a pevic mass removes…suspected lymph node. and had radiation to the area.  In Oct. 2001 had clear PET, started Yervoy.  In Feb, 2012 His Pet was a mess.  Nodules in Lungs, abdomen, Spot on FRt. femur, and 2 new masses in pelvic region.  Now Stage IV.  He did 6 weks of temodor…..progressed even more.  sites became bigger. but no brain , liver or other vital organ involvement.  His Onc. then added Abraxane.  He just has his second infusion yesterday.  Will see how it goes.  Had appt. for IL-2  possible in future when stronger.  Hope this helps and any ? feel free to respond. 

                                  Regards

                                  Susan

                                  susanr
                                  Participant

                                    Hi Elizabeth,

                                    We have a similar case.  My brother was dx. 2/2009.  Stage 3A. nasty presentation.  left foot, ulcerated.  Was sat on for a few months being treated for foot wound, diabetes work up.  after his SLN bx. had micro mets., then lymph node dissection of the groin, about year later had a pevic mass removes…suspected lymph node. and had radiation to the area.  In Oct. 2001 had clear PET, started Yervoy.  In Feb, 2012 His Pet was a mess.  Nodules in Lungs, abdomen, Spot on FRt. femur, and 2 new masses in pelvic region.  Now Stage IV.  He did 6 weks of temodor…..progressed even more.  sites became bigger. but no brain , liver or other vital organ involvement.  His Onc. then added Abraxane.  He just has his second infusion yesterday.  Will see how it goes.  Had appt. for IL-2  possible in future when stronger.  Hope this helps and any ? feel free to respond. 

                                    Regards

                                    Susan

                                    susanr
                                    Participant

                                      Hi Elizabeth,

                                      We have a similar case.  My brother was dx. 2/2009.  Stage 3A. nasty presentation.  left foot, ulcerated.  Was sat on for a few months being treated for foot wound, diabetes work up.  after his SLN bx. had micro mets., then lymph node dissection of the groin, about year later had a pevic mass removes…suspected lymph node. and had radiation to the area.  In Oct. 2001 had clear PET, started Yervoy.  In Feb, 2012 His Pet was a mess.  Nodules in Lungs, abdomen, Spot on FRt. femur, and 2 new masses in pelvic region.  Now Stage IV.  He did 6 weks of temodor…..progressed even more.  sites became bigger. but no brain , liver or other vital organ involvement.  His Onc. then added Abraxane.  He just has his second infusion yesterday.  Will see how it goes.  Had appt. for IL-2  possible in future when stronger.  Hope this helps and any ? feel free to respond. 

                                      Regards

                                      Susan

                                      Lucassi
                                      Participant

                                        My husband was diagnosed with this type of melanoma in 2010.  His toe was amputated and SNB was clean.  He received  Interferon for one month.  Earlier this year, a CT scan revealed  a nodule in his rt. lung.  A lung bx. confirmed melanoma.  He is now on Yervoy; has had two treatments with no side effects other than fatigue.  His initial tumor was negative for BRAF and CKIT so I'm hoping that Yervoy will work as his options for other treatments are limited.   Wishing you the best.

                                        Sigrid

                                        Lucassi
                                        Participant

                                          My husband was diagnosed with this type of melanoma in 2010.  His toe was amputated and SNB was clean.  He received  Interferon for one month.  Earlier this year, a CT scan revealed  a nodule in his rt. lung.  A lung bx. confirmed melanoma.  He is now on Yervoy; has had two treatments with no side effects other than fatigue.  His initial tumor was negative for BRAF and CKIT so I'm hoping that Yervoy will work as his options for other treatments are limited.   Wishing you the best.

                                          Sigrid

                                          Lucassi
                                          Participant

                                            My husband was diagnosed with this type of melanoma in 2010.  His toe was amputated and SNB was clean.  He received  Interferon for one month.  Earlier this year, a CT scan revealed  a nodule in his rt. lung.  A lung bx. confirmed melanoma.  He is now on Yervoy; has had two treatments with no side effects other than fatigue.  His initial tumor was negative for BRAF and CKIT so I'm hoping that Yervoy will work as his options for other treatments are limited.   Wishing you the best.

                                            Sigrid

                                              cwu
                                              Participant

                                                Hi Elizabeth,

                                                My father has acral mel too, from a mole on the heel of his right leg.  He had surgery, wide local excision, of his primary tumor on his right heel in 2010. About a year later, he has numerous in transit lesions traveling up his right leg. He is c-kit positive.  When we looked into treatment, we looked at the side effects of the treatment and didnt consider anything too toxic since dad is 83 years old.  He did about 2 months of a trial for a c-kit inhibitor, dasatinib, but that didnt work for him.  He then went on to do Yervoy (ippilmumab) and had all 4 infusions.  He had a severe reaction after his last dose and had to be hospitalized for a week for brain imflammation that caused his salt level to drop.  His lesions have gotten worse but his doctor thinks that Yervoy has helped to slow his tumors since the doctor expected his tumors to be much worse by now. Dad finished yervoy last November. Dad is not seeking anymore systemic treatment since there is nothing available that is not too toxic so we are in a wait and see mode.

                                                If surgery works, that is the best, however, melanoma tends to recur and sometimes recur very quickly. The best options are systemic treatment such as Yervoy or anti-pd1, many people on this board said they work best when the tumor burden is low. 

                                                Chau

                                                Gaius Gracchus
                                                Participant

                                                  My spouse's ALM was not in the lymph nodes, but if it were, we were ready to head to Latvia for treatment with RIGVIR.

                                                  More countries are using it for metastatic cancers and it has its best record of success with metastatic melanoma.

                                                  Gaius Gracchus
                                                  Participant

                                                    My spouse's ALM was not in the lymph nodes, but if it were, we were ready to head to Latvia for treatment with RIGVIR.

                                                    More countries are using it for metastatic cancers and it has its best record of success with metastatic melanoma.

                                                    Gaius Gracchus
                                                    Participant

                                                      My spouse's ALM was not in the lymph nodes, but if it were, we were ready to head to Latvia for treatment with RIGVIR.

                                                      More countries are using it for metastatic cancers and it has its best record of success with metastatic melanoma.

                                                      cwu
                                                      Participant

                                                        Hi Elizabeth,

                                                        My father has acral mel too, from a mole on the heel of his right leg.  He had surgery, wide local excision, of his primary tumor on his right heel in 2010. About a year later, he has numerous in transit lesions traveling up his right leg. He is c-kit positive.  When we looked into treatment, we looked at the side effects of the treatment and didnt consider anything too toxic since dad is 83 years old.  He did about 2 months of a trial for a c-kit inhibitor, dasatinib, but that didnt work for him.  He then went on to do Yervoy (ippilmumab) and had all 4 infusions.  He had a severe reaction after his last dose and had to be hospitalized for a week for brain imflammation that caused his salt level to drop.  His lesions have gotten worse but his doctor thinks that Yervoy has helped to slow his tumors since the doctor expected his tumors to be much worse by now. Dad finished yervoy last November. Dad is not seeking anymore systemic treatment since there is nothing available that is not too toxic so we are in a wait and see mode.

                                                        If surgery works, that is the best, however, melanoma tends to recur and sometimes recur very quickly. The best options are systemic treatment such as Yervoy or anti-pd1, many people on this board said they work best when the tumor burden is low. 

                                                        Chau

                                                        cwu
                                                        Participant

                                                          Hi Elizabeth,

                                                          My father has acral mel too, from a mole on the heel of his right leg.  He had surgery, wide local excision, of his primary tumor on his right heel in 2010. About a year later, he has numerous in transit lesions traveling up his right leg. He is c-kit positive.  When we looked into treatment, we looked at the side effects of the treatment and didnt consider anything too toxic since dad is 83 years old.  He did about 2 months of a trial for a c-kit inhibitor, dasatinib, but that didnt work for him.  He then went on to do Yervoy (ippilmumab) and had all 4 infusions.  He had a severe reaction after his last dose and had to be hospitalized for a week for brain imflammation that caused his salt level to drop.  His lesions have gotten worse but his doctor thinks that Yervoy has helped to slow his tumors since the doctor expected his tumors to be much worse by now. Dad finished yervoy last November. Dad is not seeking anymore systemic treatment since there is nothing available that is not too toxic so we are in a wait and see mode.

                                                          If surgery works, that is the best, however, melanoma tends to recur and sometimes recur very quickly. The best options are systemic treatment such as Yervoy or anti-pd1, many people on this board said they work best when the tumor burden is low. 

                                                          Chau

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