The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Acral Lentiginous Melhanoma

Forums General Melanoma Community Acral Lentiginous Melhanoma

  • Post
    2atlascedars
    Participant
      SNB completed…inguinal incision is about 3 inches long…expected 1 inch.

      WLE completed, but doctor couldn’t close with a split-thickness skin graft, so he used cadaver skin as a temporary closure. I will have to come back in a week or so (after the SNB results) for a full-thickness skin graft from my thigh.

      Looks like I won’t be able to walk for about 3 weeks. Also, due to Thanksgiving week, I may not know my SNB results until the Monday after Thanksgiving.

      SNB completed…inguinal incision is about 3 inches long…expected 1 inch.

      WLE completed, but doctor couldn’t close with a split-thickness skin graft, so he used cadaver skin as a temporary closure. I will have to come back in a week or so (after the SNB results) for a full-thickness skin graft from my thigh.

      Looks like I won’t be able to walk for about 3 weeks. Also, due to Thanksgiving week, I may not know my SNB results until the Monday after Thanksgiving.

      Loading spinner
    Viewing 9 reply threads
    • Replies
        Becky
        Participant

          Sounds a little painful!

          Waiting is so hard..hope you find out good news from the SNB!

          Loading spinner
          Becky
          Participant

            Sounds a little painful!

            Waiting is so hard..hope you find out good news from the SNB!

            Loading spinner
            JerryfromFauq
            Participant

              Waiting is no FUn!

              Have they run any C-kit tests on the

              Acral Lentiginous Melanoma tumor?

              If postive then Gleevec and  Dasatinib are possible successful treatments that you can try.

              Good luck!

              Jerryfromfauq

              Loading spinner
              JerryfromFauq
              Participant

                Waiting is no FUn!

                Have they run any C-kit tests on the

                Acral Lentiginous Melanoma tumor?

                If postive then Gleevec and  Dasatinib are possible successful treatments that you can try.

                Good luck!

                Jerryfromfauq

                Loading spinner
                2atlascedars
                Participant
                  Jerry,

                  They have not run a C-Kit test as of yet. My ONC has told me he hasn’t discussed what we will do if they find melanoma in the lymph nodes yet. Perhaps that would be one of the options they would offer me. Would you recommend I ask about it in the event of a positive SNB finding? Or would you recommend asking for it even with a negative SNB?

                  Thanks for your thoughts and concerns,
                  Mark from California

                  Loading spinner
                  2atlascedars
                  Participant
                    Jerry,

                    They have not run a C-Kit test as of yet. My ONC has told me he hasn’t discussed what we will do if they find melanoma in the lymph nodes yet. Perhaps that would be one of the options they would offer me. Would you recommend I ask about it in the event of a positive SNB finding? Or would you recommend asking for it even with a negative SNB?

                    Thanks for your thoughts and concerns,
                    Mark from California

                    Loading spinner
                      Becky
                      Participant

                        Mark, who is your doctor? I am in the Bay Area too and have Kaiser. When Ben was first dx and Kaiser recommended interferon we asked for a second opionon and they sent us to Stanford. All the (interferon) treatments were done through Kaiser.

                        As far as the Ckit testing, I had to go out and ask for that. I emailed Dr Bastian at UCSF (dont think he is there anymore) and he agreed to do it so I had to request Kaiser send the tumor/slides to him.

                        Kaiser has been great but they are not melanoma experts. If things progress, I will porbably ask to go to UCSF or California Pacific..have read good things about both of them.

                        Loading spinner
                        Becky
                        Participant

                          Mark, who is your doctor? I am in the Bay Area too and have Kaiser. When Ben was first dx and Kaiser recommended interferon we asked for a second opionon and they sent us to Stanford. All the (interferon) treatments were done through Kaiser.

                          As far as the Ckit testing, I had to go out and ask for that. I emailed Dr Bastian at UCSF (dont think he is there anymore) and he agreed to do it so I had to request Kaiser send the tumor/slides to him.

                          Kaiser has been great but they are not melanoma experts. If things progress, I will porbably ask to go to UCSF or California Pacific..have read good things about both of them.

                          Loading spinner
                        JerryfromFauq
                        Participant

                          Mark, I do recommend That if a tumor is identified as either mucousal or Acral Lentiginous Melanoma  that the first of the two c-kit tests be conducted.  The first test can be conducted readily at any laboratory and is low cost.  If the first test is negative that would be the end of the c-kit testing.  My philosophy is that since Mucousal and Acral Lentiginous Melanoma are the most likely to have the c-kit, then one has advance knowledge of what may be the most successful path to follow if there is a re-occurrence.  Advance knowledge is good and reduces last minute terror if a re-occurrence or metastasis does show up. 
                             I tried to find a post I made on this subject last year (post=465470), but Do not see how to find the older posts that were created under the MPIP for the past 15 years. 

                             I need to make an update on the Oct 2009 post because a recent study has been opened using Dasatinib, which is generally for people that cannot take Gleevec or for which Gleevec has become ineffective. (For melanoma – C-kit is a requirement.)

                          My email is [email protected]

                           

                          Gleevec – for C-kit


                          [ Replies ] [ Next Reply ] [ Help ]


                          Posted by JerryfromFauq at 10:41 on Tue, Oct 13, 2009    [Show other posts by JerryfromFauq]

                          Introduction to C-KIT Treatment – Gleevec ( imatinib mesylate) produced by Norvartis. Developed at Oregon Health and Science University

                          OHSU Cancer Instutute researchers find abnormalities in gene…

                          Published: Thursday, May 29, 2008 – 21:08 in Health & Medicine … Gleevec, which was developed at the OHSU Cancer Institute. … GUMC researchers find gene function 'lost' in melanoma and glioblastoma. Mon, 15 Dec 2008, 6:36:13 EST …

                          http://esciencenews.com/articles/2008/05/29/ohsu.cancer.instutute.researchers.find.abnormalities.gene.melanoma

                          FDA Approved in 2001 for: Chronic myeloid leukemia, Philadelphia Chromosome positive chronic myeloid leeujemia ( Chronic and blast phases), Philadelphia Chromosome positive acute lymphoblastic leukemia, mylodysp;astic/myeloproliferative diseases, aggressive systemic mastocytosis, hyperosinophillis syndrime, , chorinc eosinophilis leukemia, metastic dermatofibrosarcoma protuberans ( (a tumor that forms under the top layer of skin) when the tumor cannot be removed surgically, has spread to other parts of the body, or has come back after surgery.), metastic gastroitestinal stromal tumors (GIST; a type of tumor that grows in the walls of the digestive passages and may spread to other parts of the body),

                          Mode of action:

                          BCR-ABL, C-KIT, PDGFR

                          Imatinib is in a class of medications called protein-tyrosine kinase inhibitors. It works by blocking the action of the abnormal protein that signals cancer cells to multiply.

                          Modified version of Gleevec under development: Name: WBZ_4 The modified version reduces cardiac complications and drops the BCR-ABL mode of action.

                          The first thing to do is to get tumor material to a laboratory to have the first test run. This test is a simple immunohistochemical stain that can be conducted at any laboratory for c-kit over-expression. If this test is positive then a much more complicated test is required. This second test is a C-kit DNA mutation amplification test. It may take a month or more to get the results of this test.

                          The best known location (and developer of the DNA mutation test is : (They are used by Johns Hopkins and UVA for the mutation test.)

                          Oregon Health and Science University

                          Department of Pathology

                          Anatomic Pathology Laboratories, Dillehuat Hall Room 5022

                          3181 S.W. Sam Jackson Park Road, Mail code L-471, Portland, Oregon 97239

                          NIH, Gleevec information

                          http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=medmaster&log$=drug_bottom_one∂=a606018

                          ******************************************************************************

                          If one has an unknown primary, the C-Kit stain test may give needed guidance for possible treatment options..

                          If one has had melanoma tumors that may fall in one of the suspect subsets, having the c-kit tests conducted ahead of time can reduce the time and possible false starts to obtaining what may be a successful treatment.

                          Additional information has recently shown that many head and neck melanoma's (HNMM) also express C-Kit.

                          The latest information I have seen indicates that Gleevec may also be effective in treating a subset of B-RAF oncoprotein melanoma's. (This falls into the area of one of the “B-RAF wild types”.)

                          Other studies are showing that Gleevec acting in its ??????????_______??????? mode may also be effective against Glioblastoma's.

                          One should not have to be stage IV to use the Gleevec. It is approved as a cancer drug and can most likely be obtained if your Doctor decides to go along with it's use and will push for it.

                          Melanoma is an off-label usage of Gleevec. Some insurance companies fight paying for off-label usage of FDA approved medicines.

                          IIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIII insurance

                          Insurance & Off label drug usage – Long

                          **************************************************************************

                          Early thoughts were that imatinib mesylate might be a “cure-all” for most cancers. It was found in general Melanoma trials in the early 2000's to have little positive effect on melanoma and so most research for use in treating Melanoma was dropped. In May 2008 a paper showing extremely good results on one c-kit over-expression patient with a particular c-kit DNA mutation was written up by F. Stephen Hodi, Philip Friedlander. The Melanoma Program, Department of Medical Oncology, Dana-Farber Cancer Institute, Harvard Medical School, Boston, MA.

                          http://abclocal.go.com/kabc/story?section=news/health&id=6264591

                          It has been learned that not only the initial c-kit immunohistochemical stain expression test was necessary for success with the Gleevec, but that a DNA mutation amplification procedure for a particular DNA mutation of the c-kit oncoprotein in the tumor was required to greatly improve the Gleevec responder rate.

                          http://www.find-health-articles.com/rec_pub_19035443-pathological-activation-kit-metastatic-tumors-acral-mucosal-melanomas.htm

                          Research article summary (published 13 Feb 2009):

                          Pathological activation of KIT in metastatic tumors of acral and mucosal melanomas.

                          ***************************************************

                          Dr. Wen-Jen Hwu at MDA is also doing work on Imatinib mesylate on Melanoma at MDA . She provided the following information/protocol:

                          As you remember from our conversation that approximately 30% – 40% of mucosal and acral lentiginous melanoma have c-kit over expression/mutation. I routinely ask our pathologist

                          to do an immunohistochemical stain of c-kit (this can be done easily at any local pathology lab) and only takes 2-3 days to get the results. If the c-kit expression is seen in majority of the tumor cells, then I will ask for molecular testing for c-kit mutation.

                          If the immunohistochemical stain of c-kit shows positive in majority of tumor cell, I would start Gleevec in combination with temozolomide as the following:

                          1. Gleevec: 200 mg oral twice daily for 4 weeks if no toxicity

                          (most common is GI toxicity) then increase to 400 mg twice daily.  If can't tolerate the high dose, then decrease to 200 mg twice daily.

                          2. Temozolomide: 75 mg/m2/day oral for 6 weeks followed by 2 weeks off.

                          Each treatment cycle is 8 weeks. You should have a CT scan right before starting this combination therapy as a baseline study, then repeat scan after each 8 weeks of treatment to evaluate the disease response.  If the disease improves or remains stable, continue the 8 weeks treatments.  If there is any new tumor or further progression, then stop the treatment.

                          *****************************************************************************

                          The above protocol was successful in cases of metastases to other organs, including the brain. Preliminary results show that if both tests are positive, there is a 40-50% chance that a positive Gleevec response will be obtained. This is the highest success rate of anything I've found on any type of melanoma.

                          Initially for melanoma, Gleevec was only considered for melanoma's subsets that fell within the following two subsets, Mucosal and Acral lentiginous Melanoma. (ALM).

                          *********************************

                          I passed the immunohistochemical stain test for the C-Kit. The paraffin block was sent to Oregon for the DNA mutation amplification test. The following response was received, “We isolated DNA from the tumor, but it was heavily contaminated by melanin pigment. Unfortunately, melanin co-purifies the DNA and is a well known inhibitor of PCR reactions. We were unable to amplify the DNA despite repeated attempts. It there is a less pigmented tumor available from another site, we would welcome the opportunity to test it."

                          Due to the limited options available, the high probability of the mutation occurring in mucosal melanoma and the usually milder side effects of Gleevec, my oncologist requested approval from the insurance company to go ahead with the usage of Gleevec. They agreed.

                          A listing of observed side effects is at the following URL.

                          http://www.patientsville.com/medication/gleevec10_side_effects.htm#question

                          NIH list of Gleevec side effects:

                          Imatinib may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

                          diarrhea

                          constipation

                          gas

                          nausea

                          vomiting

                          loss of appetite

                          indigestion

                          joint pain

                          muscle cramps

                          depression

                          anxiety

                          night sweats

                          teary eyes

                          Some side effects can be serious. If you experience any of these symptoms call your doctor immediately:

                          puffiness under the eyes

                          swelling of the hands, feet, ankles, or lower legs

                          weight gain

                          shortness of breath

                          fast, irregular, or pounding heartbeat

                          difficulty falling asleep or staying asleep

                          fainting

                          coughing up pink or bloody mucus

                          increased urination, especially at night

                          chest pain

                          fever

                          rash or blisters

                          yellowing of the skin or eyes

                          blood in the stool

                          unusual bruising or bleeding

                          sore throat, fever, chills, and other signs of infection

                          excessive tiredness or weakness

                          headache

                          dizziness

                          Imatinib may cause other side effects. Call your doctor if you have any unusual problems while taking this medication

                          Loading spinner
                          JerryfromFauq
                          Participant

                            Mark, I do recommend That if a tumor is identified as either mucousal or Acral Lentiginous Melanoma  that the first of the two c-kit tests be conducted.  The first test can be conducted readily at any laboratory and is low cost.  If the first test is negative that would be the end of the c-kit testing.  My philosophy is that since Mucousal and Acral Lentiginous Melanoma are the most likely to have the c-kit, then one has advance knowledge of what may be the most successful path to follow if there is a re-occurrence.  Advance knowledge is good and reduces last minute terror if a re-occurrence or metastasis does show up. 
                               I tried to find a post I made on this subject last year (post=465470), but Do not see how to find the older posts that were created under the MPIP for the past 15 years. 

                               I need to make an update on the Oct 2009 post because a recent study has been opened using Dasatinib, which is generally for people that cannot take Gleevec or for which Gleevec has become ineffective. (For melanoma – C-kit is a requirement.)

                            My email is [email protected]

                             

                            Gleevec – for C-kit


                            [ Replies ] [ Next Reply ] [ Help ]


                            Posted by JerryfromFauq at 10:41 on Tue, Oct 13, 2009    [Show other posts by JerryfromFauq]

                            Introduction to C-KIT Treatment – Gleevec ( imatinib mesylate) produced by Norvartis. Developed at Oregon Health and Science University

                            OHSU Cancer Instutute researchers find abnormalities in gene…

                            Published: Thursday, May 29, 2008 – 21:08 in Health & Medicine … Gleevec, which was developed at the OHSU Cancer Institute. … GUMC researchers find gene function 'lost' in melanoma and glioblastoma. Mon, 15 Dec 2008, 6:36:13 EST …

                            http://esciencenews.com/articles/2008/05/29/ohsu.cancer.instutute.researchers.find.abnormalities.gene.melanoma

                            FDA Approved in 2001 for: Chronic myeloid leukemia, Philadelphia Chromosome positive chronic myeloid leeujemia ( Chronic and blast phases), Philadelphia Chromosome positive acute lymphoblastic leukemia, mylodysp;astic/myeloproliferative diseases, aggressive systemic mastocytosis, hyperosinophillis syndrime, , chorinc eosinophilis leukemia, metastic dermatofibrosarcoma protuberans ( (a tumor that forms under the top layer of skin) when the tumor cannot be removed surgically, has spread to other parts of the body, or has come back after surgery.), metastic gastroitestinal stromal tumors (GIST; a type of tumor that grows in the walls of the digestive passages and may spread to other parts of the body),

                            Mode of action:

                            BCR-ABL, C-KIT, PDGFR

                            Imatinib is in a class of medications called protein-tyrosine kinase inhibitors. It works by blocking the action of the abnormal protein that signals cancer cells to multiply.

                            Modified version of Gleevec under development: Name: WBZ_4 The modified version reduces cardiac complications and drops the BCR-ABL mode of action.

                            The first thing to do is to get tumor material to a laboratory to have the first test run. This test is a simple immunohistochemical stain that can be conducted at any laboratory for c-kit over-expression. If this test is positive then a much more complicated test is required. This second test is a C-kit DNA mutation amplification test. It may take a month or more to get the results of this test.

                            The best known location (and developer of the DNA mutation test is : (They are used by Johns Hopkins and UVA for the mutation test.)

                            Oregon Health and Science University

                            Department of Pathology

                            Anatomic Pathology Laboratories, Dillehuat Hall Room 5022

                            3181 S.W. Sam Jackson Park Road, Mail code L-471, Portland, Oregon 97239

                            NIH, Gleevec information

                            http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=medmaster&log$=drug_bottom_one∂=a606018

                            ******************************************************************************

                            If one has an unknown primary, the C-Kit stain test may give needed guidance for possible treatment options..

                            If one has had melanoma tumors that may fall in one of the suspect subsets, having the c-kit tests conducted ahead of time can reduce the time and possible false starts to obtaining what may be a successful treatment.

                            Additional information has recently shown that many head and neck melanoma's (HNMM) also express C-Kit.

                            The latest information I have seen indicates that Gleevec may also be effective in treating a subset of B-RAF oncoprotein melanoma's. (This falls into the area of one of the “B-RAF wild types”.)

                            Other studies are showing that Gleevec acting in its ??????????_______??????? mode may also be effective against Glioblastoma's.

                            One should not have to be stage IV to use the Gleevec. It is approved as a cancer drug and can most likely be obtained if your Doctor decides to go along with it's use and will push for it.

                            Melanoma is an off-label usage of Gleevec. Some insurance companies fight paying for off-label usage of FDA approved medicines.

                            IIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIII insurance

                            Insurance & Off label drug usage – Long

                            **************************************************************************

                            Early thoughts were that imatinib mesylate might be a “cure-all” for most cancers. It was found in general Melanoma trials in the early 2000's to have little positive effect on melanoma and so most research for use in treating Melanoma was dropped. In May 2008 a paper showing extremely good results on one c-kit over-expression patient with a particular c-kit DNA mutation was written up by F. Stephen Hodi, Philip Friedlander. The Melanoma Program, Department of Medical Oncology, Dana-Farber Cancer Institute, Harvard Medical School, Boston, MA.

                            http://abclocal.go.com/kabc/story?section=news/health&id=6264591

                            It has been learned that not only the initial c-kit immunohistochemical stain expression test was necessary for success with the Gleevec, but that a DNA mutation amplification procedure for a particular DNA mutation of the c-kit oncoprotein in the tumor was required to greatly improve the Gleevec responder rate.

                            http://www.find-health-articles.com/rec_pub_19035443-pathological-activation-kit-metastatic-tumors-acral-mucosal-melanomas.htm

                            Research article summary (published 13 Feb 2009):

                            Pathological activation of KIT in metastatic tumors of acral and mucosal melanomas.

                            ***************************************************

                            Dr. Wen-Jen Hwu at MDA is also doing work on Imatinib mesylate on Melanoma at MDA . She provided the following information/protocol:

                            As you remember from our conversation that approximately 30% – 40% of mucosal and acral lentiginous melanoma have c-kit over expression/mutation. I routinely ask our pathologist

                            to do an immunohistochemical stain of c-kit (this can be done easily at any local pathology lab) and only takes 2-3 days to get the results. If the c-kit expression is seen in majority of the tumor cells, then I will ask for molecular testing for c-kit mutation.

                            If the immunohistochemical stain of c-kit shows positive in majority of tumor cell, I would start Gleevec in combination with temozolomide as the following:

                            1. Gleevec: 200 mg oral twice daily for 4 weeks if no toxicity

                            (most common is GI toxicity) then increase to 400 mg twice daily.  If can't tolerate the high dose, then decrease to 200 mg twice daily.

                            2. Temozolomide: 75 mg/m2/day oral for 6 weeks followed by 2 weeks off.

                            Each treatment cycle is 8 weeks. You should have a CT scan right before starting this combination therapy as a baseline study, then repeat scan after each 8 weeks of treatment to evaluate the disease response.  If the disease improves or remains stable, continue the 8 weeks treatments.  If there is any new tumor or further progression, then stop the treatment.

                            *****************************************************************************

                            The above protocol was successful in cases of metastases to other organs, including the brain. Preliminary results show that if both tests are positive, there is a 40-50% chance that a positive Gleevec response will be obtained. This is the highest success rate of anything I've found on any type of melanoma.

                            Initially for melanoma, Gleevec was only considered for melanoma's subsets that fell within the following two subsets, Mucosal and Acral lentiginous Melanoma. (ALM).

                            *********************************

                            I passed the immunohistochemical stain test for the C-Kit. The paraffin block was sent to Oregon for the DNA mutation amplification test. The following response was received, “We isolated DNA from the tumor, but it was heavily contaminated by melanin pigment. Unfortunately, melanin co-purifies the DNA and is a well known inhibitor of PCR reactions. We were unable to amplify the DNA despite repeated attempts. It there is a less pigmented tumor available from another site, we would welcome the opportunity to test it."

                            Due to the limited options available, the high probability of the mutation occurring in mucosal melanoma and the usually milder side effects of Gleevec, my oncologist requested approval from the insurance company to go ahead with the usage of Gleevec. They agreed.

                            A listing of observed side effects is at the following URL.

                            http://www.patientsville.com/medication/gleevec10_side_effects.htm#question

                            NIH list of Gleevec side effects:

                            Imatinib may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

                            diarrhea

                            constipation

                            gas

                            nausea

                            vomiting

                            loss of appetite

                            indigestion

                            joint pain

                            muscle cramps

                            depression

                            anxiety

                            night sweats

                            teary eyes

                            Some side effects can be serious. If you experience any of these symptoms call your doctor immediately:

                            puffiness under the eyes

                            swelling of the hands, feet, ankles, or lower legs

                            weight gain

                            shortness of breath

                            fast, irregular, or pounding heartbeat

                            difficulty falling asleep or staying asleep

                            fainting

                            coughing up pink or bloody mucus

                            increased urination, especially at night

                            chest pain

                            fever

                            rash or blisters

                            yellowing of the skin or eyes

                            blood in the stool

                            unusual bruising or bleeding

                            sore throat, fever, chills, and other signs of infection

                            excessive tiredness or weakness

                            headache

                            dizziness

                            Imatinib may cause other side effects. Call your doctor if you have any unusual problems while taking this medication

                            Loading spinner
                            Brandi
                            Participant

                              I hate to wait for anything I like immediate results. I hope this all turns out well for you and that you are not in too much pain after your procedure.

                              Loading spinner
                              Brandi
                              Participant

                                I hate to wait for anything I like immediate results. I hope this all turns out well for you and that you are not in too much pain after your procedure.

                                Loading spinner
                            Viewing 9 reply threads
                            • You must be logged in to reply to this topic.
                            About the MRF Patient Forum

                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.