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Vaginal Mucosal Melanoma

Forums Mucosal Melanoma Community Vaginal Mucosal Melanoma

  • Post
    fenny
    Participant

           HI all! I'm a Chinese from Fujian Province, the southern part of China. My sister was diagnosed with Stage I mucosal melanoma back in Dec 2009 and found to have advanced to Stage IV with PM (pulmonary metastasis)  this August. So far, she has gone through two surgeries and 13 cycles of chemo therapy. She has been on the following medication (said to be outdated by Catherine) from August  till now. 1. TMZ0.3g d1-5  2. Sorafenib 400mg BID (for PM)   3.

           HI all! I'm a Chinese from Fujian Province, the southern part of China. My sister was diagnosed with Stage I mucosal melanoma back in Dec 2009 and found to have advanced to Stage IV with PM (pulmonary metastasis)  this August. So far, she has gone through two surgeries and 13 cycles of chemo therapy. She has been on the following medication (said to be outdated by Catherine) from August  till now. 1. TMZ0.3g d1-5  2. Sorafenib 400mg BID (for PM)   3. Bevacizumab, Avastin   300mg q2w;q4w   Early last month, she went to Beijng for the third time for her treatment and her doctor said one lymph node in her left lung seems to go away and another one in her right lung seems to shrink. But I just wonder if the lymph nodes can go away so easily and start to doubt the PET/CT result. Did they make a mistake when doing the scan or when reading the scan result? The medical standard here in China is comparatively low and there are very few melanoma specialist except one named Guo Jun in Beijing Tumor Hospital. As melanoma patients all over China flood into Beijing to turn to Guo Jun for help, he is very proud and puts on airs when treating the patients. My sister went to Beijing 3 times and not until the third time did she see Dr. Guo in person at his office.  He translated a book titled "The Prevention, Detection and Treatment of Melanoma", written by Catherine, M. Poole, a 22-year survivor of cutaneous melanoma and founder of MIR (Melanoma International Founation). I called Catherine 3 weeks ago and she was very patient with my questions on the phone. She recommended me first ipilimumab (approved by FDA this March) and then anti-pd1 (a new clinical trial medicine). No idea whether you guys have heard about anti-pd1 and anyone is now on anti-pd1. Please let me know if you are and at what places in USA can patients have access to this new clinical trial. Catherine said that Dr. Guo Jun's Rx fails to keep up with the latest development in melanoma treatment, which freaks us out and takes away our confidence in the most authoritative doctor in China. sadThat's why I come here to seek more info from you all.

           As I mentioned above,  I doubt the result of my sister's PET/CT, i wonder if you know any doctor who's willing to read my sister's PET/CT scan she had in August. Sorafenib, a targeted drug for her PM, is kicking the crap out of her and killing her. I wonder if it is necessary for her to take this terrible untolerated drug if she doesn't have PM at all.  So please help find us a doctor to read her PET/CT scan. Thanks a lot in advance. BTW, a stage IV melanoma patient left me a message saying that he is now on pazaponib, a clinical trial at  Chao Comprehensive Cancer Center in Irvine California. It has stopped his progression for 14 months since he was discovered to be in Stage IV. Does anyone of you know about this new drug and is now on this drug too? Please let me know. This patient also mentions that he's taking high doses of resveratrol and green tea extract. Do you take some supplements to help stop or slow the progression. Please keep me informed. Thanks.    Our family is now in great confusion, not knowing whom to turn for help and how to continue my sister's treatment. Please offer whatever advice and help to  prolong my sister-in-law's survival. I really wish a miracle would work on her.  Many Thanks to You All!

       

       

       

       

          

          

        

       

    Viewing 11 reply threads
    • Replies
        James from Sydney
        Participant

          Sorry to hear about your sister's progression to stage 4. People who have Mucosal Melanoma should be tested for the C-Kit Mutation, if it tests positive then Gleevec may help her and it is low toxic compared to chemo drugs. You will need to get a tumor sample tested. Gleevec should be available in China as it is used for some other types of Cancer. 

           

          best wishes

          James

          James from Sydney
          Participant

            Sorry to hear about your sister's progression to stage 4. People who have Mucosal Melanoma should be tested for the C-Kit Mutation, if it tests positive then Gleevec may help her and it is low toxic compared to chemo drugs. You will need to get a tumor sample tested. Gleevec should be available in China as it is used for some other types of Cancer. 

             

            best wishes

            James

              fenny
              Participant

                Thanks for your message, James. Pathological section   shows that C-Kit Mutation is negative, so I think my sister cannot take Gleevec. BTW, as far as I know, Gleevec is used mainly for  leukemia  patients and it has lots of terrible side effects, right? May I know what medication are you now on what type of melanoma do you have?

                fenny
                Participant

                  Thanks for your message, James. Pathological section   shows that C-Kit Mutation is negative, so I think my sister cannot take Gleevec. BTW, as far as I know, Gleevec is used mainly for  leukemia  patients and it has lots of terrible side effects, right? May I know what medication are you now on what type of melanoma do you have?

                  JerryfromFauq
                  Participant

                    James's son died from melanoma.

                    Gleevec is approved and most used for GIST, in additiion to CML and leukemia.  It has very few strong bad side effects.  I have been on it for almost 3 years with very minor side effects.  It is not an option if your sister is c-kit negative for even the c-kit oncoprotein test.  Gist, CML and Leukemia all are likely too have c-kit oncoprotein overexpression, aas are several types of melanoma.

                    Did you receive the two emails I sent to you listing info?  Was the c-kit oncoprotein test negative or the c-kit DNA mutation test negative?   

                    JerryfromFauq
                    Participant

                      James's son died from melanoma.

                      Gleevec is approved and most used for GIST, in additiion to CML and leukemia.  It has very few strong bad side effects.  I have been on it for almost 3 years with very minor side effects.  It is not an option if your sister is c-kit negative for even the c-kit oncoprotein test.  Gist, CML and Leukemia all are likely too have c-kit oncoprotein overexpression, aas are several types of melanoma.

                      Did you receive the two emails I sent to you listing info?  Was the c-kit oncoprotein test negative or the c-kit DNA mutation test negative?   

                      JerryfromFauq
                      Participant

                        James's son died from melanoma.

                        Gleevec is approved and most used for GIST, in additiion to CML and leukemia.  It has very few strong bad side effects.  I have been on it for almost 3 years with very minor side effects.  It is not an option if your sister is c-kit negative for even the c-kit oncoprotein test.  Gist, CML and Leukemia all are likely too have c-kit oncoprotein overexpression, aas are several types of melanoma.

                        Did you receive the two emails I sent to you listing info?  Was the c-kit oncoprotein test negative or the c-kit DNA mutation test negative?   

                        fenny
                        Participant

                          Now that you asked me whether it was c-kit oncroprotein test negative or c-kit DNA mutation test negative, I am really confused as I don't know how to tell from the pathology diagnosis.  My sister's doctor in charge told her that she was c-kit DNA mutation negative and hence she cannot take "vemurafenib", a new drug aimed at  BRAF.He also mentioned that most Chinese are not brafv600e patients, but ipi (ipilimumab) is an option for all melanoma patients.

                          BTW, my email address is [email protected] and would you please tell me yours? Thanks. 

                            patients              

                          fenny
                          Participant

                            Now that you asked me whether it was c-kit oncroprotein test negative or c-kit DNA mutation test negative, I am really confused as I don't know how to tell from the pathology diagnosis.  My sister's doctor in charge told her that she was c-kit DNA mutation negative and hence she cannot take "vemurafenib", a new drug aimed at  BRAF.He also mentioned that most Chinese are not brafv600e patients, but ipi (ipilimumab) is an option for all melanoma patients.

                            BTW, my email address is [email protected] and would you please tell me yours? Thanks. 

                              patients              

                            fenny
                            Participant

                              Now that you asked me whether it was c-kit oncroprotein test negative or c-kit DNA mutation test negative, I am really confused as I don't know how to tell from the pathology diagnosis.  My sister's doctor in charge told her that she was c-kit DNA mutation negative and hence she cannot take "vemurafenib", a new drug aimed at  BRAF.He also mentioned that most Chinese are not brafv600e patients, but ipi (ipilimumab) is an option for all melanoma patients.

                              BTW, my email address is [email protected] and would you please tell me yours? Thanks. 

                                patients              

                              JerryfromFauq
                              Participant

                                [email protected]  I'm also hanging in the MPIP Chat room right now.  C-kit is not connected  with vemurafenib.  i will forward the two emails that I sent you thru the MPIP/MRF profile conotact  method.

                                JerryfromFauq
                                Participant

                                  [email protected]  I'm also hanging in the MPIP Chat room right now.  C-kit is not connected  with vemurafenib.  i will forward the two emails that I sent you thru the MPIP/MRF profile conotact  method.

                                  JerryfromFauq
                                  Participant

                                    [email protected]  I'm also hanging in the MPIP Chat room right now.  C-kit is not connected  with vemurafenib.  i will forward the two emails that I sent you thru the MPIP/MRF profile conotact  method.

                                    JerryfromFauq
                                    Participant

                                      for info on Sorafenib Read:

                                      http://www.nature.com/bjc/journal/v95/n5/abs/6603291a.html

                                      I have never seen Sorafenib refered to as a strictly targeted drug like the anti-BRAF or anti-c-kit drugs.

                                      Catherine at the MIF gives good information. 

                                      Does the pathology report say anything about the BRAF V600E test staatus?  according to :

                                      http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0015588 

                                      and

                                      http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0015588

                                        Sorafenib has little effect on BRAF mutations.

                                      If there are any PD-1 trials available in China, you should investigate them.  They are very promising for many types  of melanoma.

                                      JerryfromFauq
                                      Participant

                                        for info on Sorafenib Read:

                                        http://www.nature.com/bjc/journal/v95/n5/abs/6603291a.html

                                        I have never seen Sorafenib refered to as a strictly targeted drug like the anti-BRAF or anti-c-kit drugs.

                                        Catherine at the MIF gives good information. 

                                        Does the pathology report say anything about the BRAF V600E test staatus?  according to :

                                        http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0015588 

                                        and

                                        http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0015588

                                          Sorafenib has little effect on BRAF mutations.

                                        If there are any PD-1 trials available in China, you should investigate them.  They are very promising for many types  of melanoma.

                                        JerryfromFauq
                                        Participant

                                          for info on Sorafenib Read:

                                          http://www.nature.com/bjc/journal/v95/n5/abs/6603291a.html

                                          I have never seen Sorafenib refered to as a strictly targeted drug like the anti-BRAF or anti-c-kit drugs.

                                          Catherine at the MIF gives good information. 

                                          Does the pathology report say anything about the BRAF V600E test staatus?  according to :

                                          http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0015588 

                                          and

                                          http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0015588

                                            Sorafenib has little effect on BRAF mutations.

                                          If there are any PD-1 trials available in China, you should investigate them.  They are very promising for many types  of melanoma.

                                          fenny
                                          Participant

                                            Thanks for your message, James. Pathological section   shows that C-Kit Mutation is negative, so I think my sister cannot take Gleevec. BTW, as far as I know, Gleevec is used mainly for  leukemia  patients and it has lots of terrible side effects, right? May I know what medication are you now on what type of melanoma do you have?

                                          James from Sydney
                                          Participant

                                            Sorry to hear about your sister's progression to stage 4. People who have Mucosal Melanoma should be tested for the C-Kit Mutation, if it tests positive then Gleevec may help her and it is low toxic compared to chemo drugs. You will need to get a tumor sample tested. Gleevec should be available in China as it is used for some other types of Cancer. 

                                             

                                            best wishes

                                            James

                                            JerryfromFauq
                                            Participant

                                              Full prescribing information is available, including clinical trial information, safety, dosing, drug-drug interactions, and contraindications.

                                              On October 19, 2009, the Food and Drug Administration (FDA) granted approval to pazopanib hydrochloride tablets (Votrient™, made by GlaxoSmithKline) for the treatment of patients with advanced renal cell carcinoma.

                                              http://www.cancer.gov/cancertopics/druginfo/fda-pazopanibhydrochloride

                                              http://www.gsk.com/media/pressreleases/2009/2009_us_pressrelease_10039.htm

                                              Apperently this is basicaly an an angiogenesis oral medicine that prevents the growth of new blood vessels to tumors.  It is currently in trials relating to melanoma.  

                                              JerryfromFauq
                                              Participant

                                                Full prescribing information is available, including clinical trial information, safety, dosing, drug-drug interactions, and contraindications.

                                                On October 19, 2009, the Food and Drug Administration (FDA) granted approval to pazopanib hydrochloride tablets (Votrient™, made by GlaxoSmithKline) for the treatment of patients with advanced renal cell carcinoma.

                                                http://www.cancer.gov/cancertopics/druginfo/fda-pazopanibhydrochloride

                                                http://www.gsk.com/media/pressreleases/2009/2009_us_pressrelease_10039.htm

                                                Apperently this is basicaly an an angiogenesis oral medicine that prevents the growth of new blood vessels to tumors.  It is currently in trials relating to melanoma.  

                                                JerryfromFauq
                                                Participant

                                                  Full prescribing information is available, including clinical trial information, safety, dosing, drug-drug interactions, and contraindications.

                                                  On October 19, 2009, the Food and Drug Administration (FDA) granted approval to pazopanib hydrochloride tablets (Votrient™, made by GlaxoSmithKline) for the treatment of patients with advanced renal cell carcinoma.

                                                  http://www.cancer.gov/cancertopics/druginfo/fda-pazopanibhydrochloride

                                                  http://www.gsk.com/media/pressreleases/2009/2009_us_pressrelease_10039.htm

                                                  Apperently this is basicaly an an angiogenesis oral medicine that prevents the growth of new blood vessels to tumors.  It is currently in trials relating to melanoma.  

                                                    killmel
                                                    Participant

                                                      Jerry,

                                                       

                                                      so happy to see that you are posting.are you feeling better. we are all worried ablout you.

                                                      Charlie S. post has us concerned, please give us a status on you.

                                                      JerryfromFauq
                                                      Participant

                                                        Either I or JerryfromCapeCod is "the other Jerry"    Seems now I am donig better than my friend, "the other Jerry"  I meant to call him today, but forgot all that I wanted to get done.  Please pray for our great warrier "the Other Jerry"  He is really quite a man.  It has been aeveral weeks since we spoke last and he was not feeling up to long conversations at that time.

                                                        JerryfromFauq
                                                        Participant

                                                          Either I or JerryfromCapeCod is "the other Jerry"    Seems now I am donig better than my friend, "the other Jerry"  I meant to call him today, but forgot all that I wanted to get done.  Please pray for our great warrier "the Other Jerry"  He is really quite a man.  It has been aeveral weeks since we spoke last and he was not feeling up to long conversations at that time.

                                                          JerryfromFauq
                                                          Participant

                                                            Either I or JerryfromCapeCod is "the other Jerry"    Seems now I am donig better than my friend, "the other Jerry"  I meant to call him today, but forgot all that I wanted to get done.  Please pray for our great warrier "the Other Jerry"  He is really quite a man.  It has been aeveral weeks since we spoke last and he was not feeling up to long conversations at that time.

                                                            killmel
                                                            Participant

                                                              Jerry,

                                                               

                                                              so happy to see that you are posting.are you feeling better. we are all worried ablout you.

                                                              Charlie S. post has us concerned, please give us a status on you.

                                                              killmel
                                                              Participant

                                                                Jerry,

                                                                 

                                                                so happy to see that you are posting.are you feeling better. we are all worried ablout you.

                                                                Charlie S. post has us concerned, please give us a status on you.

                                                              CaliforniaCaregiver
                                                              Participant

                                                                Here is the link to the Pazopanib and Paclitaxel (VEGF inihibitor and Chemo) at UCI. It is true that John Fruehauf, MD, PhD is setting very good results.

                                                                 

                                                                http://clinicaltrials.gov/ct2/show/NCT01107665

                                                                 

                                                                Good Luck

                                                                  JerryfromFauq
                                                                  Participant

                                                                    i emailed a question to my Oncologist today  about the pazopanib and here is a part of his response. 

                                                                    "Pazopanib also inhibits c-kit "    This adds to the interest in this treatment.

                                                                     

                                                                     

                                                                    JerryfromFauq
                                                                    Participant

                                                                      i emailed a question to my Oncologist today  about the pazopanib and here is a part of his response. 

                                                                      "Pazopanib also inhibits c-kit "    This adds to the interest in this treatment.

                                                                       

                                                                       

                                                                      JerryfromFauq
                                                                      Participant

                                                                        i emailed a question to my Oncologist today  about the pazopanib and here is a part of his response. 

                                                                        "Pazopanib also inhibits c-kit "    This adds to the interest in this treatment.

                                                                         

                                                                         

                                                                      CaliforniaCaregiver
                                                                      Participant

                                                                        Here is the link to the Pazopanib and Paclitaxel (VEGF inihibitor and Chemo) at UCI. It is true that John Fruehauf, MD, PhD is setting very good results.

                                                                         

                                                                        http://clinicaltrials.gov/ct2/show/NCT01107665

                                                                         

                                                                        Good Luck

                                                                        CaliforniaCaregiver
                                                                        Participant

                                                                          Here is the link to the Pazopanib and Paclitaxel (VEGF inihibitor and Chemo) at UCI. It is true that John Fruehauf, MD, PhD is setting very good results.

                                                                           

                                                                          http://clinicaltrials.gov/ct2/show/NCT01107665

                                                                           

                                                                          Good Luck

                                                                          Tim–MRF
                                                                          Guest

                                                                            I am sorry to hear about your sister-in-law.  You are clearly a wonderful advocate working on her behalf.

                                                                            You have had some excellent replies to your post, and I have little to add.  I would like to clarify a few things, however.

                                                                            Melanoma is disease in which melanocytes become cancerous.  The mechanism by which this happens can vary widely, however.  Those mechanisms are grouped into several categories, so essentially melanoma is a cluster of a dozen or so different cancers.

                                                                            Mucosal melanoma is rare.  Early in our formation melanocytes can migrate to some degree.  So while they are normally found in the skin, a few randome melanocytes can end up in the mucosal membranes or in the eye.  If those melanocytes become malignant you have mucosal or ocular (uveal) melanoma, respectively.

                                                                            In melanoma of the skin, about half of patients have a BRAF mutation that causes a constant signaling to the cell to grow and divide.  Those patients are eligible to take Zelboraf (vemurafenib) to block the signaling of the mutated BRAF. BRAF mutation virtually never occurs in mucosal, uveal, or acral melanoma.

                                                                            Similarly, KIT mutation virtually never occurs in cutaneous melanoma, but is fairly common in mucosal melanoma.  One study showed 91% of mucosal melanoma patients have an overepression of the c-KIT protein.  Interestingly, of that group only about 16% were found to have a mutation of the KIT gene that codes for c-KIT.  This is, I think, the difference between looking for overexpression of c-KIT and looking for an actual mutation of the KIT gene.  Jerry or others will likely have a better feel for what this distinction means in terms of treatment.  In general, though, if you have the mutation then treatment with a c-KIT inhibitor like Gleevec makes sense.

                                                                            Hope this helps a bit.

                                                                             

                                                                            Tim–MRF

                                                                            Tim–MRF
                                                                            Guest

                                                                              I am sorry to hear about your sister-in-law.  You are clearly a wonderful advocate working on her behalf.

                                                                              You have had some excellent replies to your post, and I have little to add.  I would like to clarify a few things, however.

                                                                              Melanoma is disease in which melanocytes become cancerous.  The mechanism by which this happens can vary widely, however.  Those mechanisms are grouped into several categories, so essentially melanoma is a cluster of a dozen or so different cancers.

                                                                              Mucosal melanoma is rare.  Early in our formation melanocytes can migrate to some degree.  So while they are normally found in the skin, a few randome melanocytes can end up in the mucosal membranes or in the eye.  If those melanocytes become malignant you have mucosal or ocular (uveal) melanoma, respectively.

                                                                              In melanoma of the skin, about half of patients have a BRAF mutation that causes a constant signaling to the cell to grow and divide.  Those patients are eligible to take Zelboraf (vemurafenib) to block the signaling of the mutated BRAF. BRAF mutation virtually never occurs in mucosal, uveal, or acral melanoma.

                                                                              Similarly, KIT mutation virtually never occurs in cutaneous melanoma, but is fairly common in mucosal melanoma.  One study showed 91% of mucosal melanoma patients have an overepression of the c-KIT protein.  Interestingly, of that group only about 16% were found to have a mutation of the KIT gene that codes for c-KIT.  This is, I think, the difference between looking for overexpression of c-KIT and looking for an actual mutation of the KIT gene.  Jerry or others will likely have a better feel for what this distinction means in terms of treatment.  In general, though, if you have the mutation then treatment with a c-KIT inhibitor like Gleevec makes sense.

                                                                              Hope this helps a bit.

                                                                               

                                                                              Tim–MRF

                                                                              Tim–MRF
                                                                              Guest

                                                                                I am sorry to hear about your sister-in-law.  You are clearly a wonderful advocate working on her behalf.

                                                                                You have had some excellent replies to your post, and I have little to add.  I would like to clarify a few things, however.

                                                                                Melanoma is disease in which melanocytes become cancerous.  The mechanism by which this happens can vary widely, however.  Those mechanisms are grouped into several categories, so essentially melanoma is a cluster of a dozen or so different cancers.

                                                                                Mucosal melanoma is rare.  Early in our formation melanocytes can migrate to some degree.  So while they are normally found in the skin, a few randome melanocytes can end up in the mucosal membranes or in the eye.  If those melanocytes become malignant you have mucosal or ocular (uveal) melanoma, respectively.

                                                                                In melanoma of the skin, about half of patients have a BRAF mutation that causes a constant signaling to the cell to grow and divide.  Those patients are eligible to take Zelboraf (vemurafenib) to block the signaling of the mutated BRAF. BRAF mutation virtually never occurs in mucosal, uveal, or acral melanoma.

                                                                                Similarly, KIT mutation virtually never occurs in cutaneous melanoma, but is fairly common in mucosal melanoma.  One study showed 91% of mucosal melanoma patients have an overepression of the c-KIT protein.  Interestingly, of that group only about 16% were found to have a mutation of the KIT gene that codes for c-KIT.  This is, I think, the difference between looking for overexpression of c-KIT and looking for an actual mutation of the KIT gene.  Jerry or others will likely have a better feel for what this distinction means in terms of treatment.  In general, though, if you have the mutation then treatment with a c-KIT inhibitor like Gleevec makes sense.

                                                                                Hope this helps a bit.

                                                                                 

                                                                                Tim–MRF

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