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Isolated limb perfusion (ILP), topical immunotherapy, amputation?

Forums Cutaneous Melanoma Community Isolated limb perfusion (ILP), topical immunotherapy, amputation?

  • Post
    cwu
    Participant

      Dad is on IPI(Yervoy) for numerous cutaneous in transit lesions on his lower right leg.  He just finished his third infusion. I spoke with his onco again and he said we need to be prepared if Yervoy doesnt work and there are limited options.  I have been looking into anti-PD1 trials as back up plan.

      Dad is on IPI(Yervoy) for numerous cutaneous in transit lesions on his lower right leg.  He just finished his third infusion. I spoke with his onco again and he said we need to be prepared if Yervoy doesnt work and there are limited options.  I have been looking into anti-PD1 trials as back up plan. However, I have also been reading on treatments for in transit lesions and some treatments for in transit mets are isolated limb perfusion/infusion (ILP), topical immunotherapy (creams), and amputation.  Has anyone here done any of these treatments, how was recovery, what are your results, and recommendations? Did amputation or ILP keep the melanoma from recurring? I am very scared of ILP and amputation and whether dad can survive these procedures. 

      Chau 

    Viewing 2 reply threads
    • Replies
        FormerCaregiver
        Participant

          Chau,

          This is interesting. I am starting to think that Yervoy might not be the best treatment
          for this type of melanoma. Therefore, I wonder if an entirely different approach might
          be needed?

          From my previous post:
          http://www.melanoma.org/community/mpip-melanoma-patients-information-page/failed-tiljim-b-and-others-need-advice#comment-29630

          If there are only visible tumours, I now wonder if your dad has primary dermal
          melanoma? See: http://www.ncbi.nlm.nih.gov/pubmed/18209168

          If this is the case, then perhaps a different approach such as PV-10 would be worth
          considering?

          Here is some info on a PV-10 (Rose Bengal) trial:
          http://www.clinicaltrials.gov/ct2/show/NCT01260779?term=PV-10+melanoma&rank=3

          This is an old video about it:
          http://www.youtube.com/watch?v=HSjoev_q9Nw

          The company's website is at:
          http://www.pvct.com/

          Hope this helps.

          Frank from Australia

            LynnLuc
            Participant

              Ipi is not going to work for everybody, but it has awesome results for those it works on. I am on Anti PD 1 and so far so good as I remain NED at stage 4. I sat in a conference where they discussed limb perfusion last year and it has had some really good successes for a lot of people as well. Has the on mentioned Anti PD 1 or limb perfusion or is that your research? I  have also read about PV-10 however I haven't seen large clinical trials to show how effective it is. I have read a few case studies where it appears to work well in a some people. I think as a last resort I would try most anything. Lynn

              cwu
              Participant

                Hi Lynn,

                I am happy that anti-PD1 is working for you and I hope you are NED for many more years. It seems like limb perfusion is effective for some with local/regional in transit mets. It seems like a very difficult surgery with long recovery and potential complications. Limb perfusion was discussed with us when dad initially diagnosed with his primary and we decided on wide local excision and skin graft instead. My father's onco hasnt given us any definitive back up plan for Yervoy yet which is very frustating for us. I have been asking about it and will ask again. I have been doing research on my own to see what other options may be available.

                Thanks, Lynn.

                Chau

                cwu
                Participant

                  Hi Lynn,

                  I am happy that anti-PD1 is working for you and I hope you are NED for many more years. It seems like limb perfusion is effective for some with local/regional in transit mets. It seems like a very difficult surgery with long recovery and potential complications. Limb perfusion was discussed with us when dad initially diagnosed with his primary and we decided on wide local excision and skin graft instead. My father's onco hasnt given us any definitive back up plan for Yervoy yet which is very frustating for us. I have been asking about it and will ask again. I have been doing research on my own to see what other options may be available.

                  Thanks, Lynn.

                  Chau

                  cwu
                  Participant

                    Hi Lynn,

                    I am happy that anti-PD1 is working for you and I hope you are NED for many more years. It seems like limb perfusion is effective for some with local/regional in transit mets. It seems like a very difficult surgery with long recovery and potential complications. Limb perfusion was discussed with us when dad initially diagnosed with his primary and we decided on wide local excision and skin graft instead. My father's onco hasnt given us any definitive back up plan for Yervoy yet which is very frustating for us. I have been asking about it and will ask again. I have been doing research on my own to see what other options may be available.

                    Thanks, Lynn.

                    Chau

                    LynnLuc
                    Participant

                      Ipi is not going to work for everybody, but it has awesome results for those it works on. I am on Anti PD 1 and so far so good as I remain NED at stage 4. I sat in a conference where they discussed limb perfusion last year and it has had some really good successes for a lot of people as well. Has the on mentioned Anti PD 1 or limb perfusion or is that your research? I  have also read about PV-10 however I haven't seen large clinical trials to show how effective it is. I have read a few case studies where it appears to work well in a some people. I think as a last resort I would try most anything. Lynn

                      LynnLuc
                      Participant

                        Ipi is not going to work for everybody, but it has awesome results for those it works on. I am on Anti PD 1 and so far so good as I remain NED at stage 4. I sat in a conference where they discussed limb perfusion last year and it has had some really good successes for a lot of people as well. Has the on mentioned Anti PD 1 or limb perfusion or is that your research? I  have also read about PV-10 however I haven't seen large clinical trials to show how effective it is. I have read a few case studies where it appears to work well in a some people. I think as a last resort I would try most anything. Lynn

                        cwu
                        Participant

                          Frank,

                          I will ask his onco about the topical immunotherapy lotion is any option for him. I did ask his onco last week about PV-10 and he indicated that the trials for those are closed and not sure what results of those trials are. I think dad's tumors are in transit mets from his primary tumor in his right heel. I believe that is what his lab reports show. Do you know how we can find out whether it is MM or primary dermal MM? Also, have you heard of diphencyprone (DPCP)? I have been looking into this and i think there are trials in Australia but cant find much info here in the US.

                          Thanks for your input.

                          Chau

                          FormerCaregiver
                          Participant

                            Chau, if your dad doesn't have any internal tumours then I suspect that he has primary
                            dermal melanoma. Can you remind me – has he had a CT or PET scan recently? I don't know
                            if there is a definite way of telling if it is PDM, unless pathology is able to
                            determine this.

                            However, since your dad has the c-kit mutation mucosal melanoma is a strong possibility.
                            As Jerry has mentioned at:
                            http://www.melanoma.org/community/mpip-melanoma-patients-information-page/question-about-melanoma-recurrence#comment-26674
                            "For melanomas that start on the bottom of the foot, they are likely to be Acral
                            lentiginous melanoma."

                            This situation is confusing and highlights the need for more research, so that all types
                            of melanoma can be accurately identified.

                            I am not familiar with diphencyprone, however I found some info about at
                            http://www.ncbi.nlm.nih.gov/pubmed/19916970

                            As far as I know, the best site for clinical trial info is at:
                            http://www.clinicaltrials.gov/ct2/home

                            Here are the search results for PDM:
                            http://www.clinicaltrials.gov/ct2/results?term=primary+dermal+melanoma&recr=Open&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=
                            (It appears that trials may not be specific about melanoma types apart from obvious
                            genetic mutations).

                            Hope this helps.

                            Frank from Australia

                            FormerCaregiver
                            Participant

                              Chau, if your dad doesn't have any internal tumours then I suspect that he has primary
                              dermal melanoma. Can you remind me – has he had a CT or PET scan recently? I don't know
                              if there is a definite way of telling if it is PDM, unless pathology is able to
                              determine this.

                              However, since your dad has the c-kit mutation mucosal melanoma is a strong possibility.
                              As Jerry has mentioned at:
                              http://www.melanoma.org/community/mpip-melanoma-patients-information-page/question-about-melanoma-recurrence#comment-26674
                              "For melanomas that start on the bottom of the foot, they are likely to be Acral
                              lentiginous melanoma."

                              This situation is confusing and highlights the need for more research, so that all types
                              of melanoma can be accurately identified.

                              I am not familiar with diphencyprone, however I found some info about at
                              http://www.ncbi.nlm.nih.gov/pubmed/19916970

                              As far as I know, the best site for clinical trial info is at:
                              http://www.clinicaltrials.gov/ct2/home

                              Here are the search results for PDM:
                              http://www.clinicaltrials.gov/ct2/results?term=primary+dermal+melanoma&recr=Open&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=
                              (It appears that trials may not be specific about melanoma types apart from obvious
                              genetic mutations).

                              Hope this helps.

                              Frank from Australia

                              cwu
                              Participant
                                Frank,
                                His last Ct/PET scans were done on 8/31/2011 and they were clear. He won’t have scans again until mid Dec after he’s done with the last dose of Yervoy. When he had his primary tumor removed last year, he also had 3 lymph nodes removed from the groin area, two of which were metastatic melanoma. He had a punch biopsy of one his lesions in May this year and his pathology report shows that it is metastatic melanoma. I don’t know if this rules out PDM.? It is so confusing. Thanks for all the info. I saw a trial for a cream imiquimod that may be good for him.
                                Chau
                                FormerCaregiver
                                Participant

                                  Chau, it is encouraging that the scans were clear. Further scans mid December are a good
                                  idea, and hopefully they will be clear as well.

                                  I wonder if you would have a copy of a pathology report? You could copy and paste the
                                  info and post it here. Unfortunately, the term "metastatic melanoma" is a general
                                  expression that doesn't really tell us what type the tumour is.

                                  Here is some info on imiquimod:
                                  http://en.wikipedia.org/wiki/Imiquimod

                                  Frank from Australia

                                  FormerCaregiver
                                  Participant

                                    Chau, it is encouraging that the scans were clear. Further scans mid December are a good
                                    idea, and hopefully they will be clear as well.

                                    I wonder if you would have a copy of a pathology report? You could copy and paste the
                                    info and post it here. Unfortunately, the term "metastatic melanoma" is a general
                                    expression that doesn't really tell us what type the tumour is.

                                    Here is some info on imiquimod:
                                    http://en.wikipedia.org/wiki/Imiquimod

                                    Frank from Australia

                                    cwu
                                    Participant

                                      Here is what the pathology report. I dont really know what it is saying. From what I read of PDM, it seems that it usually doesnt metastasize to the lymph nodes and dad had two lymph nodes in his groin that are were metastatic melanoma.

                                      DIAGNOSIS

                                      (A) THIGH, RIGHT UPPER, SKIN PUNCH:

                                      MELANOMA METASTATIC TO DERMIS, PRESENT AT INKED DEEP TISSUE EDGE

                                      TUMOR SIZE: 0.5 x 0.4 MM, AT LEAST

                                      Tumor borders: infiltrative

                                      CAT/KM

                                      5/26/2011 10:48 AM

                                      GROSS DESCRIPTION

                                      (A) RIGHT UPPER THIGH – A tan skin punch received in two pieces aggregating 0.6 x 0.4 x 0.2 cm. The larger piece is inked blue and

                                      bisected. The skin punch is submitted entirely in A1. HN/elk

                                      CLINICAL HISTORY

                                      Melanoma of the right heel.

                                      cwu
                                      Participant

                                        Here is what the pathology report. I dont really know what it is saying. From what I read of PDM, it seems that it usually doesnt metastasize to the lymph nodes and dad had two lymph nodes in his groin that are were metastatic melanoma.

                                        DIAGNOSIS

                                        (A) THIGH, RIGHT UPPER, SKIN PUNCH:

                                        MELANOMA METASTATIC TO DERMIS, PRESENT AT INKED DEEP TISSUE EDGE

                                        TUMOR SIZE: 0.5 x 0.4 MM, AT LEAST

                                        Tumor borders: infiltrative

                                        CAT/KM

                                        5/26/2011 10:48 AM

                                        GROSS DESCRIPTION

                                        (A) RIGHT UPPER THIGH – A tan skin punch received in two pieces aggregating 0.6 x 0.4 x 0.2 cm. The larger piece is inked blue and

                                        bisected. The skin punch is submitted entirely in A1. HN/elk

                                        CLINICAL HISTORY

                                        Melanoma of the right heel.

                                        FormerCaregiver
                                        Participant

                                          Chau, thanks for posting this info. The report doesn't say much, apart from the tumour
                                          being metastatic to the dermis (see: http://en.wikipedia.org/wiki/Dermis). I don't know
                                          if having 2 positive lymph nodes would rule out PDM entirely. Therefore, we will need to
                                          find this out.

                                          Frank from Australia

                                          FormerCaregiver
                                          Participant

                                            Chau, thanks for posting this info. The report doesn't say much, apart from the tumour
                                            being metastatic to the dermis (see: http://en.wikipedia.org/wiki/Dermis). I don't know
                                            if having 2 positive lymph nodes would rule out PDM entirely. Therefore, we will need to
                                            find this out.

                                            Frank from Australia

                                            FormerCaregiver
                                            Participant

                                              Chau, thanks for posting this info. The report doesn't say much, apart from the tumour
                                              being metastatic to the dermis (see: http://en.wikipedia.org/wiki/Dermis). I don't know
                                              if having 2 positive lymph nodes would rule out PDM entirely. Therefore, we will need to
                                              find this out.

                                              Frank from Australia

                                              Vermont_Donna
                                              Participant

                                                Hi Chau,

                                                Hi. I have had intransit metastatic melanoma for 5 years now. Please read my profile for more information on my treatments including isoalted limb perfusion. ILP has a reportedly 85% success rate of eliminating the melanoma….and indeed the procedure did for me…but for like 10 months. Then it came back and really spread and they eventually offered me amputation from the hip down as a way to deal with it. No-one can say that it hasnt traveled out of my leg into the rest of my body but if so it hasnt landed anywhere that we can see (PET/CT scans negative). I was then offered Ipi in a clinical trial, 3mg/kg. I was a complete responder….after the 4 infusions all my tumors reasborbed and today, 9 months later I am still NED.

                                                As far as the ILP procedure….read my profile….they give you anti nausea meds before and during and after the procedure and I did fine. The procedure went smoothly. I was a mass general in Boston. I do have moderate neuropathy of my right leg from the knee down though, that started 30 days after the procedure and I had a lot of pain initially and had to deal with that for about 18 months. I had the procedure in 9/09.

                                                I know one person has posted in the past about leg amputation…do a search for leg amputation. My oncologist said he has had three people opt to do a leg amputation over the last 20 years and their quality of life was good. Not sure how long they survived. I didnt want to amputate becasue I have a healing problem and worried that the stump wouldnt heal and it would get infected and I wouldnt survive that (I have a history of severe cellulitis infections and slow healing woulds….ie two wider excisions took 17 months to heal…yes you read that right 17 months!)

                                                Please ask me any questions you would like! Oh and give the Ipi the full 4 doses to kick in!

                                                Vermont_Donna, stage 3a, NED

                                                Vermont_Donna
                                                Participant

                                                  Hi Chau,

                                                  Hi. I have had intransit metastatic melanoma for 5 years now. Please read my profile for more information on my treatments including isoalted limb perfusion. ILP has a reportedly 85% success rate of eliminating the melanoma….and indeed the procedure did for me…but for like 10 months. Then it came back and really spread and they eventually offered me amputation from the hip down as a way to deal with it. No-one can say that it hasnt traveled out of my leg into the rest of my body but if so it hasnt landed anywhere that we can see (PET/CT scans negative). I was then offered Ipi in a clinical trial, 3mg/kg. I was a complete responder….after the 4 infusions all my tumors reasborbed and today, 9 months later I am still NED.

                                                  As far as the ILP procedure….read my profile….they give you anti nausea meds before and during and after the procedure and I did fine. The procedure went smoothly. I was a mass general in Boston. I do have moderate neuropathy of my right leg from the knee down though, that started 30 days after the procedure and I had a lot of pain initially and had to deal with that for about 18 months. I had the procedure in 9/09.

                                                  I know one person has posted in the past about leg amputation…do a search for leg amputation. My oncologist said he has had three people opt to do a leg amputation over the last 20 years and their quality of life was good. Not sure how long they survived. I didnt want to amputate becasue I have a healing problem and worried that the stump wouldnt heal and it would get infected and I wouldnt survive that (I have a history of severe cellulitis infections and slow healing woulds….ie two wider excisions took 17 months to heal…yes you read that right 17 months!)

                                                  Please ask me any questions you would like! Oh and give the Ipi the full 4 doses to kick in!

                                                  Vermont_Donna, stage 3a, NED

                                                  cwu
                                                  Participant

                                                    Hi Donna,

                                                    Thank you for responding and giving me more information about your experience with ILP. I have read your profile and alot of your postings as you are one of the people on this forum with in transit mets on the leg like my father. I have done alot of research on ILP and this was discussed with us initially when he was diagnosed with his primary tumor on his heel a year ago. Based on his surgeon;s recommendation, we decided to do wide local excision with skin graft instead. That surgey was very difficult on dad, his blood pressure went through the roof and we were afraid he may not make it. Fortunately he did, the recovery took about 8-10 months and here we are now with in transit mets. Based on his health and age, I dont think ILP, amputation, or meds with high tocxicity are options for him. however, I dont want to rule anything out yet.  I hope that IPI will kick in but his onco is not optimistic as his lesions seem to get more aggressive. I wanted to see if you had the same experience when you went through IPI, how big and aggressive did your lesions get? I know they eventually reabsorbed but my dad's lesions are not doing anything but get bigger. Do you mind giving me your email address so I can correspond with you? My email address is [email protected].

                                                    Thank you Donna,

                                                    Chau

                                                    cwu
                                                    Participant

                                                      Hi Donna,

                                                      Thank you for responding and giving me more information about your experience with ILP. I have read your profile and alot of your postings as you are one of the people on this forum with in transit mets on the leg like my father. I have done alot of research on ILP and this was discussed with us initially when he was diagnosed with his primary tumor on his heel a year ago. Based on his surgeon;s recommendation, we decided to do wide local excision with skin graft instead. That surgey was very difficult on dad, his blood pressure went through the roof and we were afraid he may not make it. Fortunately he did, the recovery took about 8-10 months and here we are now with in transit mets. Based on his health and age, I dont think ILP, amputation, or meds with high tocxicity are options for him. however, I dont want to rule anything out yet.  I hope that IPI will kick in but his onco is not optimistic as his lesions seem to get more aggressive. I wanted to see if you had the same experience when you went through IPI, how big and aggressive did your lesions get? I know they eventually reabsorbed but my dad's lesions are not doing anything but get bigger. Do you mind giving me your email address so I can correspond with you? My email address is [email protected].

                                                      Thank you Donna,

                                                      Chau

                                                      cwu
                                                      Participant

                                                        Hi Donna,

                                                        Thank you for responding and giving me more information about your experience with ILP. I have read your profile and alot of your postings as you are one of the people on this forum with in transit mets on the leg like my father. I have done alot of research on ILP and this was discussed with us initially when he was diagnosed with his primary tumor on his heel a year ago. Based on his surgeon;s recommendation, we decided to do wide local excision with skin graft instead. That surgey was very difficult on dad, his blood pressure went through the roof and we were afraid he may not make it. Fortunately he did, the recovery took about 8-10 months and here we are now with in transit mets. Based on his health and age, I dont think ILP, amputation, or meds with high tocxicity are options for him. however, I dont want to rule anything out yet.  I hope that IPI will kick in but his onco is not optimistic as his lesions seem to get more aggressive. I wanted to see if you had the same experience when you went through IPI, how big and aggressive did your lesions get? I know they eventually reabsorbed but my dad's lesions are not doing anything but get bigger. Do you mind giving me your email address so I can correspond with you? My email address is [email protected].

                                                        Thank you Donna,

                                                        Chau

                                                        Vermont_Donna
                                                        Participant

                                                          Hi Chau,

                                                          Hi. I have had intransit metastatic melanoma for 5 years now. Please read my profile for more information on my treatments including isoalted limb perfusion. ILP has a reportedly 85% success rate of eliminating the melanoma….and indeed the procedure did for me…but for like 10 months. Then it came back and really spread and they eventually offered me amputation from the hip down as a way to deal with it. No-one can say that it hasnt traveled out of my leg into the rest of my body but if so it hasnt landed anywhere that we can see (PET/CT scans negative). I was then offered Ipi in a clinical trial, 3mg/kg. I was a complete responder….after the 4 infusions all my tumors reasborbed and today, 9 months later I am still NED.

                                                          As far as the ILP procedure….read my profile….they give you anti nausea meds before and during and after the procedure and I did fine. The procedure went smoothly. I was a mass general in Boston. I do have moderate neuropathy of my right leg from the knee down though, that started 30 days after the procedure and I had a lot of pain initially and had to deal with that for about 18 months. I had the procedure in 9/09.

                                                          I know one person has posted in the past about leg amputation…do a search for leg amputation. My oncologist said he has had three people opt to do a leg amputation over the last 20 years and their quality of life was good. Not sure how long they survived. I didnt want to amputate becasue I have a healing problem and worried that the stump wouldnt heal and it would get infected and I wouldnt survive that (I have a history of severe cellulitis infections and slow healing woulds….ie two wider excisions took 17 months to heal…yes you read that right 17 months!)

                                                          Please ask me any questions you would like! Oh and give the Ipi the full 4 doses to kick in!

                                                          Vermont_Donna, stage 3a, NED

                                                          cwu
                                                          Participant

                                                            Here is what the pathology report. I dont really know what it is saying. From what I read of PDM, it seems that it usually doesnt metastasize to the lymph nodes and dad had two lymph nodes in his groin that are were metastatic melanoma.

                                                            DIAGNOSIS

                                                            (A) THIGH, RIGHT UPPER, SKIN PUNCH:

                                                            MELANOMA METASTATIC TO DERMIS, PRESENT AT INKED DEEP TISSUE EDGE

                                                            TUMOR SIZE: 0.5 x 0.4 MM, AT LEAST

                                                            Tumor borders: infiltrative

                                                            CAT/KM

                                                            5/26/2011 10:48 AM

                                                            GROSS DESCRIPTION

                                                            (A) RIGHT UPPER THIGH – A tan skin punch received in two pieces aggregating 0.6 x 0.4 x 0.2 cm. The larger piece is inked blue and

                                                            bisected. The skin punch is submitted entirely in A1. HN/elk

                                                            CLINICAL HISTORY

                                                            Melanoma of the right heel.

                                                            FormerCaregiver
                                                            Participant

                                                              Chau, it is encouraging that the scans were clear. Further scans mid December are a good
                                                              idea, and hopefully they will be clear as well.

                                                              I wonder if you would have a copy of a pathology report? You could copy and paste the
                                                              info and post it here. Unfortunately, the term "metastatic melanoma" is a general
                                                              expression that doesn't really tell us what type the tumour is.

                                                              Here is some info on imiquimod:
                                                              http://en.wikipedia.org/wiki/Imiquimod

                                                              Frank from Australia

                                                              cwu
                                                              Participant
                                                                Frank,
                                                                His last Ct/PET scans were done on 8/31/2011 and they were clear. He won’t have scans again until mid Dec after he’s done with the last dose of Yervoy. When he had his primary tumor removed last year, he also had 3 lymph nodes removed from the groin area, two of which were metastatic melanoma. He had a punch biopsy of one his lesions in May this year and his pathology report shows that it is metastatic melanoma. I don’t know if this rules out PDM.? It is so confusing. Thanks for all the info. I saw a trial for a cream imiquimod that may be good for him.
                                                                Chau
                                                                cwu
                                                                Participant
                                                                  Frank,
                                                                  His last Ct/PET scans were done on 8/31/2011 and they were clear. He won’t have scans again until mid Dec after he’s done with the last dose of Yervoy. When he had his primary tumor removed last year, he also had 3 lymph nodes removed from the groin area, two of which were metastatic melanoma. He had a punch biopsy of one his lesions in May this year and his pathology report shows that it is metastatic melanoma. I don’t know if this rules out PDM.? It is so confusing. Thanks for all the info. I saw a trial for a cream imiquimod that may be good for him.
                                                                  Chau
                                                                  FormerCaregiver
                                                                  Participant

                                                                    Chau, if your dad doesn't have any internal tumours then I suspect that he has primary
                                                                    dermal melanoma. Can you remind me – has he had a CT or PET scan recently? I don't know
                                                                    if there is a definite way of telling if it is PDM, unless pathology is able to
                                                                    determine this.

                                                                    However, since your dad has the c-kit mutation mucosal melanoma is a strong possibility.
                                                                    As Jerry has mentioned at:
                                                                    http://www.melanoma.org/community/mpip-melanoma-patients-information-page/question-about-melanoma-recurrence#comment-26674
                                                                    "For melanomas that start on the bottom of the foot, they are likely to be Acral
                                                                    lentiginous melanoma."

                                                                    This situation is confusing and highlights the need for more research, so that all types
                                                                    of melanoma can be accurately identified.

                                                                    I am not familiar with diphencyprone, however I found some info about at
                                                                    http://www.ncbi.nlm.nih.gov/pubmed/19916970

                                                                    As far as I know, the best site for clinical trial info is at:
                                                                    http://www.clinicaltrials.gov/ct2/home

                                                                    Here are the search results for PDM:
                                                                    http://www.clinicaltrials.gov/ct2/results?term=primary+dermal+melanoma&recr=Open&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=
                                                                    (It appears that trials may not be specific about melanoma types apart from obvious
                                                                    genetic mutations).

                                                                    Hope this helps.

                                                                    Frank from Australia

                                                                    cwu
                                                                    Participant

                                                                      Frank,

                                                                      I will ask his onco about the topical immunotherapy lotion is any option for him. I did ask his onco last week about PV-10 and he indicated that the trials for those are closed and not sure what results of those trials are. I think dad's tumors are in transit mets from his primary tumor in his right heel. I believe that is what his lab reports show. Do you know how we can find out whether it is MM or primary dermal MM? Also, have you heard of diphencyprone (DPCP)? I have been looking into this and i think there are trials in Australia but cant find much info here in the US.

                                                                      Thanks for your input.

                                                                      Chau

                                                                      cwu
                                                                      Participant

                                                                        Frank,

                                                                        I will ask his onco about the topical immunotherapy lotion is any option for him. I did ask his onco last week about PV-10 and he indicated that the trials for those are closed and not sure what results of those trials are. I think dad's tumors are in transit mets from his primary tumor in his right heel. I believe that is what his lab reports show. Do you know how we can find out whether it is MM or primary dermal MM? Also, have you heard of diphencyprone (DPCP)? I have been looking into this and i think there are trials in Australia but cant find much info here in the US.

                                                                        Thanks for your input.

                                                                        Chau

                                                                      FormerCaregiver
                                                                      Participant

                                                                        Chau,

                                                                        This is interesting. I am starting to think that Yervoy might not be the best treatment
                                                                        for this type of melanoma. Therefore, I wonder if an entirely different approach might
                                                                        be needed?

                                                                        From my previous post:
                                                                        http://www.melanoma.org/community/mpip-melanoma-patients-information-page/failed-tiljim-b-and-others-need-advice#comment-29630

                                                                        If there are only visible tumours, I now wonder if your dad has primary dermal
                                                                        melanoma? See: http://www.ncbi.nlm.nih.gov/pubmed/18209168

                                                                        If this is the case, then perhaps a different approach such as PV-10 would be worth
                                                                        considering?

                                                                        Here is some info on a PV-10 (Rose Bengal) trial:
                                                                        http://www.clinicaltrials.gov/ct2/show/NCT01260779?term=PV-10+melanoma&rank=3

                                                                        This is an old video about it:
                                                                        http://www.youtube.com/watch?v=HSjoev_q9Nw

                                                                        The company's website is at:
                                                                        http://www.pvct.com/

                                                                        Hope this helps.

                                                                        Frank from Australia

                                                                        FormerCaregiver
                                                                        Participant

                                                                          Chau,

                                                                          This is interesting. I am starting to think that Yervoy might not be the best treatment
                                                                          for this type of melanoma. Therefore, I wonder if an entirely different approach might
                                                                          be needed?

                                                                          From my previous post:
                                                                          http://www.melanoma.org/community/mpip-melanoma-patients-information-page/failed-tiljim-b-and-others-need-advice#comment-29630

                                                                          If there are only visible tumours, I now wonder if your dad has primary dermal
                                                                          melanoma? See: http://www.ncbi.nlm.nih.gov/pubmed/18209168

                                                                          If this is the case, then perhaps a different approach such as PV-10 would be worth
                                                                          considering?

                                                                          Here is some info on a PV-10 (Rose Bengal) trial:
                                                                          http://www.clinicaltrials.gov/ct2/show/NCT01260779?term=PV-10+melanoma&rank=3

                                                                          This is an old video about it:
                                                                          http://www.youtube.com/watch?v=HSjoev_q9Nw

                                                                          The company's website is at:
                                                                          http://www.pvct.com/

                                                                          Hope this helps.

                                                                          Frank from Australia

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