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Acral Lentiginous Melanoma
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Acral Lentiginous Melanoma

› Forums › General Melanoma Community › Acral Lentiginous Melanoma

  • Post
    • June 17, 2012 at 10:53 pm
    ALM
    Participant

      Hi Everyone

      From what I have read my melanoma (Acral Lentiginous Melanoma) is fairly rare (more so since I am caucasian).  Is there anyone out there who has the same disease and can offer me any info? I am stage 4. The primary liesion was on the middle toe which was amputated. A year later another liesion appeared on the ankle which was surgically excluded. I would like to know if ALM is any more dangerous or aggressive than other types of melanoma or are all melanoma basically the same?

      Thanks for any help 

      Hi Everyone

      From what I have read my melanoma (Acral Lentiginous Melanoma) is fairly rare (more so since I am caucasian).  Is there anyone out there who has the same disease and can offer me any info? I am stage 4. The primary liesion was on the middle toe which was amputated. A year later another liesion appeared on the ankle which was surgically excluded. I would like to know if ALM is any more dangerous or aggressive than other types of melanoma or are all melanoma basically the same?

      Thanks for any help 

    Viewing 14 reply threads
    • Replies
        • June 18, 2012 at 12:37 am
        noisy77
        Participant

          Hi There –

          My mom (who is caucasian) has Acral Lentiginous Melanoma – she is stage 3c (diagnosed in December).  She had her big toe amputated followed by radiation on the groin.

          I don't know if it is more dangerous  – but it seems like there is a lot less data / treatment information that is specific to ALM.

          Are you doing any further treatment beyond the surgery of the liesion on your ankle?  Curious as my mom got conflicting information between Dana Farber and Sloan.

            • June 18, 2012 at 1:16 am
            Lucassi
            Participant

              My husband also has acral lentiginous melanoma. He is 70 years old and caucasion.  His was under the toe nail on the rt. great toe.  He is now stage IV with metastasis to the lung.  He will receive his 4th infusion of Yervoy this week.  You can read about his other treatments on his profile.  He is braf and ckit negative so his treatment options will be limited if the Yervoy does not work.  I just keep hoping and praying for the best.

              Best wishes to you.

              Sigrid

              • June 18, 2012 at 1:16 am
              Lucassi
              Participant

                My husband also has acral lentiginous melanoma. He is 70 years old and caucasion.  His was under the toe nail on the rt. great toe.  He is now stage IV with metastasis to the lung.  He will receive his 4th infusion of Yervoy this week.  You can read about his other treatments on his profile.  He is braf and ckit negative so his treatment options will be limited if the Yervoy does not work.  I just keep hoping and praying for the best.

                Best wishes to you.

                Sigrid

                • June 18, 2012 at 1:16 am
                Lucassi
                Participant

                  My husband also has acral lentiginous melanoma. He is 70 years old and caucasion.  His was under the toe nail on the rt. great toe.  He is now stage IV with metastasis to the lung.  He will receive his 4th infusion of Yervoy this week.  You can read about his other treatments on his profile.  He is braf and ckit negative so his treatment options will be limited if the Yervoy does not work.  I just keep hoping and praying for the best.

                  Best wishes to you.

                  Sigrid

                • June 18, 2012 at 12:37 am
                noisy77
                Participant

                  Hi There –

                  My mom (who is caucasian) has Acral Lentiginous Melanoma – she is stage 3c (diagnosed in December).  She had her big toe amputated followed by radiation on the groin.

                  I don't know if it is more dangerous  – but it seems like there is a lot less data / treatment information that is specific to ALM.

                  Are you doing any further treatment beyond the surgery of the liesion on your ankle?  Curious as my mom got conflicting information between Dana Farber and Sloan.

                  • June 18, 2012 at 12:37 am
                  noisy77
                  Participant

                    Hi There –

                    My mom (who is caucasian) has Acral Lentiginous Melanoma – she is stage 3c (diagnosed in December).  She had her big toe amputated followed by radiation on the groin.

                    I don't know if it is more dangerous  – but it seems like there is a lot less data / treatment information that is specific to ALM.

                    Are you doing any further treatment beyond the surgery of the liesion on your ankle?  Curious as my mom got conflicting information between Dana Farber and Sloan.

                    • June 18, 2012 at 5:12 am
                    ALM
                    Participant

                      Thank you noisy77 and Lucassi for your replies – it is good for me to know I am not alone.

                       I have only just started exploring my disease so unfortunately I cannot offer too much information just yet.  I have not received any further treatment so far and hope it will never be necessary 🙂

                      I am scheduled for a PET scan tomorrow and then I see my oncologist for results on Friday – I will be sure to ask many questions and then perhaps I can help answer yours. I will keep you posted.

                      My positive thoughts and prayers are with both of you and your loved ones. 

                      • June 18, 2012 at 5:12 am
                      ALM
                      Participant

                        Thank you noisy77 and Lucassi for your replies – it is good for me to know I am not alone.

                         I have only just started exploring my disease so unfortunately I cannot offer too much information just yet.  I have not received any further treatment so far and hope it will never be necessary 🙂

                        I am scheduled for a PET scan tomorrow and then I see my oncologist for results on Friday – I will be sure to ask many questions and then perhaps I can help answer yours. I will keep you posted.

                        My positive thoughts and prayers are with both of you and your loved ones. 

                        • June 18, 2012 at 5:12 am
                        ALM
                        Participant

                          Thank you noisy77 and Lucassi for your replies – it is good for me to know I am not alone.

                           I have only just started exploring my disease so unfortunately I cannot offer too much information just yet.  I have not received any further treatment so far and hope it will never be necessary 🙂

                          I am scheduled for a PET scan tomorrow and then I see my oncologist for results on Friday – I will be sure to ask many questions and then perhaps I can help answer yours. I will keep you posted.

                          My positive thoughts and prayers are with both of you and your loved ones. 

                          • June 18, 2012 at 5:12 am
                          ALM
                          Participant

                            Thank you noisy77 and Lucassi for your replies – it is good for me to know I am not alone.

                             I have only just started exploring my disease so unfortunately I cannot offer too much information just yet.  I have not received any further treatment so far and hope it will never be necessary 🙂

                            I am scheduled for a PET scan tomorrow and then I see my oncologist for results on Friday – I will be sure to ask many questions and then perhaps I can help answer yours. I will keep you posted.

                            My positive thoughts and prayers are with both of you and your loved ones. 

                            • June 18, 2012 at 5:12 am
                            ALM
                            Participant

                              Thank you noisy77 and Lucassi for your replies – it is good for me to know I am not alone.

                               I have only just started exploring my disease so unfortunately I cannot offer too much information just yet.  I have not received any further treatment so far and hope it will never be necessary 🙂

                              I am scheduled for a PET scan tomorrow and then I see my oncologist for results on Friday – I will be sure to ask many questions and then perhaps I can help answer yours. I will keep you posted.

                              My positive thoughts and prayers are with both of you and your loved ones. 

                              • June 18, 2012 at 5:12 am
                              ALM
                              Participant

                                Thank you noisy77 and Lucassi for your replies – it is good for me to know I am not alone.

                                 I have only just started exploring my disease so unfortunately I cannot offer too much information just yet.  I have not received any further treatment so far and hope it will never be necessary 🙂

                                I am scheduled for a PET scan tomorrow and then I see my oncologist for results on Friday – I will be sure to ask many questions and then perhaps I can help answer yours. I will keep you posted.

                                My positive thoughts and prayers are with both of you and your loved ones. 

                                • August 22, 2012 at 2:41 am
                                nancywright
                                Participant

                                  I have had ALM also, having the lesion removed from the side of my foot in 1988 with a skin graft.  It was a Level III at that time and I was given  5-10% chance of surviving past 5 years.  The lesion had uclerated. I also had breast cancer two years earlier, having double mastectomies 6 weeks apart.  I did well for 11 years at which time I had a nodule in my leg removed.  It recurred again in 2003 with tumor in the thigh.  I've had approx 20+ surgeries due to cancer which includes the breast cancer, with it recurring 6 1/2 years later and also uterine cancer as a result of taking tamoxifen for the breast cancer.  I had several positive lymph nodes ( Metastatic Melanoma )  removed from 2003 to 2005 which included some in the groin area and also at the top of my spine. In  2008, I had 3 tumors removed from the thigh of which two were up against the bone and they were not able to get all of the cells.  Because of that, I was given 30 radiation treatments which evidently helped, because it has not recurred in that area as of today.  In 2010, I had another surgery because a metastatic melanoma tumor had wrapped around the aorta of my heart, grown into 2 vertebrae, and into the lower left lung.  Also another tumor that had grown into the lower part of my rib cage.  They removed the 2 vertebrae, lower left lung, and peeled the tumor off of the aorta.  The other tumor was removed and part of the rib cage also.  I now have a lesion showing in the top part of my left lung and I'm scheduled to have a brain CT scan next Tuesday in Nashville.  I do not have the BRAF gene.   I'm 67 years old and looking at me, one would never know that I've been through 3 types of cancer.  The melanoma research doctor at Vanderbilt told me a couple of years ago that I had already lived much longer than any there thought I would.  The only explanation I have is that Our Creator has been exceptionally good to me.  I walk 30 minutes daily, eat healthy and stay busy.  I'm thankful that I have my children reared and that I have seen 4 lovely grandchildren.  Keep your trust in God.  Ps. 50:15 – " Call upon Me in the day of trouble; I will deliver you, and you shall glorify Me."  I give God the glory for my being alive today. 

                                    • August 22, 2012 at 3:29 am
                                    JerryfromFauq
                                    Participant

                                       Nancy did they do the C-kit test on your ALM?

                                      I was given 2 to 6 months to live by a local – general oncologist for my C-kit melanoma nn  2007.  Never been NED, but still going.

                                      • August 22, 2012 at 3:29 am
                                      JerryfromFauq
                                      Participant

                                         Nancy did they do the C-kit test on your ALM?

                                        I was given 2 to 6 months to live by a local – general oncologist for my C-kit melanoma nn  2007.  Never been NED, but still going.

                                        • August 22, 2012 at 3:29 am
                                        JerryfromFauq
                                        Participant

                                           Nancy did they do the C-kit test on your ALM?

                                          I was given 2 to 6 months to live by a local – general oncologist for my C-kit melanoma nn  2007.  Never been NED, but still going.

                                        • August 22, 2012 at 2:41 am
                                        nancywright
                                        Participant

                                          I have had ALM also, having the lesion removed from the side of my foot in 1988 with a skin graft.  It was a Level III at that time and I was given  5-10% chance of surviving past 5 years.  The lesion had uclerated. I also had breast cancer two years earlier, having double mastectomies 6 weeks apart.  I did well for 11 years at which time I had a nodule in my leg removed.  It recurred again in 2003 with tumor in the thigh.  I've had approx 20+ surgeries due to cancer which includes the breast cancer, with it recurring 6 1/2 years later and also uterine cancer as a result of taking tamoxifen for the breast cancer.  I had several positive lymph nodes ( Metastatic Melanoma )  removed from 2003 to 2005 which included some in the groin area and also at the top of my spine. In  2008, I had 3 tumors removed from the thigh of which two were up against the bone and they were not able to get all of the cells.  Because of that, I was given 30 radiation treatments which evidently helped, because it has not recurred in that area as of today.  In 2010, I had another surgery because a metastatic melanoma tumor had wrapped around the aorta of my heart, grown into 2 vertebrae, and into the lower left lung.  Also another tumor that had grown into the lower part of my rib cage.  They removed the 2 vertebrae, lower left lung, and peeled the tumor off of the aorta.  The other tumor was removed and part of the rib cage also.  I now have a lesion showing in the top part of my left lung and I'm scheduled to have a brain CT scan next Tuesday in Nashville.  I do not have the BRAF gene.   I'm 67 years old and looking at me, one would never know that I've been through 3 types of cancer.  The melanoma research doctor at Vanderbilt told me a couple of years ago that I had already lived much longer than any there thought I would.  The only explanation I have is that Our Creator has been exceptionally good to me.  I walk 30 minutes daily, eat healthy and stay busy.  I'm thankful that I have my children reared and that I have seen 4 lovely grandchildren.  Keep your trust in God.  Ps. 50:15 – " Call upon Me in the day of trouble; I will deliver you, and you shall glorify Me."  I give God the glory for my being alive today. 

                                          • August 22, 2012 at 2:41 am
                                          nancywright
                                          Participant

                                            I have had ALM also, having the lesion removed from the side of my foot in 1988 with a skin graft.  It was a Level III at that time and I was given  5-10% chance of surviving past 5 years.  The lesion had uclerated. I also had breast cancer two years earlier, having double mastectomies 6 weeks apart.  I did well for 11 years at which time I had a nodule in my leg removed.  It recurred again in 2003 with tumor in the thigh.  I've had approx 20+ surgeries due to cancer which includes the breast cancer, with it recurring 6 1/2 years later and also uterine cancer as a result of taking tamoxifen for the breast cancer.  I had several positive lymph nodes ( Metastatic Melanoma )  removed from 2003 to 2005 which included some in the groin area and also at the top of my spine. In  2008, I had 3 tumors removed from the thigh of which two were up against the bone and they were not able to get all of the cells.  Because of that, I was given 30 radiation treatments which evidently helped, because it has not recurred in that area as of today.  In 2010, I had another surgery because a metastatic melanoma tumor had wrapped around the aorta of my heart, grown into 2 vertebrae, and into the lower left lung.  Also another tumor that had grown into the lower part of my rib cage.  They removed the 2 vertebrae, lower left lung, and peeled the tumor off of the aorta.  The other tumor was removed and part of the rib cage also.  I now have a lesion showing in the top part of my left lung and I'm scheduled to have a brain CT scan next Tuesday in Nashville.  I do not have the BRAF gene.   I'm 67 years old and looking at me, one would never know that I've been through 3 types of cancer.  The melanoma research doctor at Vanderbilt told me a couple of years ago that I had already lived much longer than any there thought I would.  The only explanation I have is that Our Creator has been exceptionally good to me.  I walk 30 minutes daily, eat healthy and stay busy.  I'm thankful that I have my children reared and that I have seen 4 lovely grandchildren.  Keep your trust in God.  Ps. 50:15 – " Call upon Me in the day of trouble; I will deliver you, and you shall glorify Me."  I give God the glory for my being alive today. 

                                            • August 22, 2012 at 3:38 am
                                            JerryfromFauq
                                            Participant

                                              What DNA mutation tests have been run on your tumor material?   Should have been checked for c-kit.

                                               

                                              The following articles list information pertinent to intransit melanoma.

                                              http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/2010529

                                              http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/2010524

                                               

                                              If you cannot access this, let me know and I will email you a copy.

                                              • August 22, 2012 at 3:38 am
                                              JerryfromFauq
                                              Participant

                                                What DNA mutation tests have been run on your tumor material?   Should have been checked for c-kit.

                                                 

                                                The following articles list information pertinent to intransit melanoma.

                                                http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/2010529

                                                http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/2010524

                                                 

                                                If you cannot access this, let me know and I will email you a copy.

                                                • August 22, 2012 at 3:38 am
                                                JerryfromFauq
                                                Participant

                                                  What DNA mutation tests have been run on your tumor material?   Should have been checked for c-kit.

                                                   

                                                  The following articles list information pertinent to intransit melanoma.

                                                  http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/2010529

                                                  http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/2010524

                                                   

                                                  If you cannot access this, let me know and I will email you a copy.

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