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Suggestions for treatment needed
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Suggestions for treatment needed

› Forums › Cutaneous Melanoma Community › Suggestions for treatment needed

  • Post
    • July 13, 2011 at 5:51 pm
    mygirlmaddy
    Participant

      My husband is stage IV with 3 subcutaneous and1 internal tumor.  We have tried IL-2, Ipi, he is B-Raf wildtype, and does not qualify for TIL due to a steroid dependency thanks to side effects of the Ipi.  He is undergoing radiation to try to shrink the tumors and our oncologist at home is recommending Temodar after radiation is done.  She has been clear that neither radiation or Temodar are consider cures.  Does anyone have suggestions about treatments not mentioned here?  I am at a loss.  My husband's records have been sent to NIH by our oncologist in Bost

      My husband is stage IV with 3 subcutaneous and1 internal tumor.  We have tried IL-2, Ipi, he is B-Raf wildtype, and does not qualify for TIL due to a steroid dependency thanks to side effects of the Ipi.  He is undergoing radiation to try to shrink the tumors and our oncologist at home is recommending Temodar after radiation is done.  She has been clear that neither radiation or Temodar are consider cures.  Does anyone have suggestions about treatments not mentioned here?  I am at a loss.  My husband's records have been sent to NIH by our oncologist in Boston  and came back with no suggestions.  I don't want to look back at this and feel like we didn't do everything we can.  I can't think of a more knowledgeable bunch than those of you in the thick of it with us.  Thanks for any suggestions.

    Viewing 5 reply threads
    • Replies
        • July 13, 2011 at 6:55 pm
        MichaelFL
        Participant
          Have you looked at clinical trias.gov to see what else may be available?

          Here are three trails with E7080 which has been commented about on this board recently.

          http://clinicaltrials.gov/ct2/results?term=e7080+melanoma

          The second trial listed has two arms, one for BRAF positive and the other for BRAF negative patents.

          Best wishes,

          Michael

            • July 13, 2011 at 7:44 pm
            mygirlmaddy
            Participant

              Thanks Michael.  I will research these options.  After reading through the inclusion/exclusions I think he may qualify for at least one of them.  I appreciate you taking the time to respond.

              Best wishes,

              Audrey

              • August 17, 2011 at 5:52 pm
              mygirlmaddy
              Participant

                Hi Michael,

                    It took a while to get to the bottom of things, but apparently the BRAF negative trial is closed for this study.  Our oncologist is of the opinion that anything we try at this point will just make him sicker and have very little benefit, with almost no possibility of cure.  I just wanted to thank you again for giving us hope for a little while.

                Audrey

                • August 17, 2011 at 5:52 pm
                mygirlmaddy
                Participant

                  Hi Michael,

                      It took a while to get to the bottom of things, but apparently the BRAF negative trial is closed for this study.  Our oncologist is of the opinion that anything we try at this point will just make him sicker and have very little benefit, with almost no possibility of cure.  I just wanted to thank you again for giving us hope for a little while.

                  Audrey

                  • July 13, 2011 at 7:44 pm
                  mygirlmaddy
                  Participant

                    Thanks Michael.  I will research these options.  After reading through the inclusion/exclusions I think he may qualify for at least one of them.  I appreciate you taking the time to respond.

                    Best wishes,

                    Audrey

                  • July 13, 2011 at 6:55 pm
                  MichaelFL
                  Participant
                    Have you looked at clinical trias.gov to see what else may be available?

                    Here are three trails with E7080 which has been commented about on this board recently.

                    http://clinicaltrials.gov/ct2/results?term=e7080+melanoma

                    The second trial listed has two arms, one for BRAF positive and the other for BRAF negative patents.

                    Best wishes,

                    Michael

                    • July 13, 2011 at 11:53 pm
                    James from Sydney
                    Participant

                      Have you considered something like PV10 which is injected into Subq's, it creats an immune response, apparently safe to use. There is another drug but i have forgotten the Company it could be Oncovex but it uses a combo of Herpes Virus and GMCSF and is also injected into Subq's both are still going through the Trial process. 

                      I know your Onc will say he has systemic disease and working on one front will not solve the problem. I personally believe Melanoma must be attacked on several fronts. Both these drugs appear to have bystander effect and might also help eliminate cancer cells in surrounding tissue. 

                       

                      best wishes

                      James

                        • July 14, 2011 at 1:37 pm
                        mygirlmaddy
                        Participant

                          Hi James,

                              Thank you for your suggestion.  I will discuss both of these options with our oncologist.  There is so much out there, it's overwhelming, so it's great to have a resource that doesn't require sifting through every bit of information.

                          Take care,

                          Audrey

                          • July 14, 2011 at 1:37 pm
                          mygirlmaddy
                          Participant

                            Hi James,

                                Thank you for your suggestion.  I will discuss both of these options with our oncologist.  There is so much out there, it's overwhelming, so it's great to have a resource that doesn't require sifting through every bit of information.

                            Take care,

                            Audrey

                            • July 14, 2011 at 10:21 pm
                            JerryfromFauq
                            Participant
                              May I ask where internally and what size for the internal tumor? And ho far did your husband get with the il-2 and Ipi treatments?

                              Temodar crosses the Blood brain barrier to help fight brain metastases. I have reports where it seems to be the more successful against melanoma when also used with cytostatic drugs. Wen Jen Hwu at MD Anderson has done work along these lines.

                              As your Doctor noted radiation has limited benefit gains against melanomas.

                              I agree with James about attacking melanoma on more than one front. Many doctors don’t seem to think this way. They don’t like combining treatments. Not too many doctors do much with direct injections either. Many more things kill melanoma cells in petri dishes and direct injection is closer to that than pills.

                              From internet search for PV-10 and melanoma.
                              Advanced Melanoma Patients May Benefit from PV-10 : CancerConnect News
                              Jul 6, 2011 … PV-10 is a drug that is being studied in clinical trials in cutaneous and subcutaneous melanoma metastases. PV-10 is a derivative of Rose .Bengal..
                              news.cancerconnect.com/advanced-melanoma-patients-may-benefit-from-pv-10/
                              Chemoablation of melanoma with intralesional rose bengal (PV-10 …
                              In phase 1 testing in 20 subjects with AJCC Stage III (19 subjects) or IV (1 subject) melanoma, a single injection of PV-10 into 1-20 lesions led to durable …
                              http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=34524
                              PV-10 Melanoma Drug Trial Enrolls Patients in Compassionate Use …
                              Nov 23, 2010 … PV-10 Melanoma Drug Trial Enrolls Patients in Compassionate Use Program – Elsevier Global Medical News. 2010 Nov 23, A Ault.
                              http://www.oncologystat.com/news/PV-10_Melanoma_Drug_Trial_Enrolls_Patients_in_Compassionate_Use_Program_US.html;jsessionid=2B43E205367BB4EA9EE7BDB425F6633A

                              Good luck..

                              • August 17, 2011 at 6:00 pm
                              mygirlmaddy
                              Participant

                                I don't know the size of his internal tumors at this time, but the last scans said about 1mm and 3mm.  He has been having radiation on them (his final treatment is today), but we have not seen any significant effect on the tumors that are visible and he shows signs of additional tumors now.

                                I gave the information regarding the pv-10 to our oncologist.  Unfortunately, Eric has been very sick at times (can't reach an ecog score of 1 or better) and is steroid dependent, so does not qualify for many treatments.   I don't have the knowledge necessary to dispute or confirm that assessment, so I have to trust the doctors.  It seems we have hit a wall with treatment options and have been told that anything he does at this point would just be buying time, so he can choose to feel good or he can take more treatments knowing they will make him sick. 

                                I appreciate your suggestion and will gladly take any others.

                                Audrey

                                • August 17, 2011 at 6:00 pm
                                mygirlmaddy
                                Participant

                                  I don't know the size of his internal tumors at this time, but the last scans said about 1mm and 3mm.  He has been having radiation on them (his final treatment is today), but we have not seen any significant effect on the tumors that are visible and he shows signs of additional tumors now.

                                  I gave the information regarding the pv-10 to our oncologist.  Unfortunately, Eric has been very sick at times (can't reach an ecog score of 1 or better) and is steroid dependent, so does not qualify for many treatments.   I don't have the knowledge necessary to dispute or confirm that assessment, so I have to trust the doctors.  It seems we have hit a wall with treatment options and have been told that anything he does at this point would just be buying time, so he can choose to feel good or he can take more treatments knowing they will make him sick. 

                                  I appreciate your suggestion and will gladly take any others.

                                  Audrey

                                  • July 14, 2011 at 10:21 pm
                                  JerryfromFauq
                                  Participant
                                    May I ask where internally and what size for the internal tumor? And ho far did your husband get with the il-2 and Ipi treatments?

                                    Temodar crosses the Blood brain barrier to help fight brain metastases. I have reports where it seems to be the more successful against melanoma when also used with cytostatic drugs. Wen Jen Hwu at MD Anderson has done work along these lines.

                                    As your Doctor noted radiation has limited benefit gains against melanomas.

                                    I agree with James about attacking melanoma on more than one front. Many doctors don’t seem to think this way. They don’t like combining treatments. Not too many doctors do much with direct injections either. Many more things kill melanoma cells in petri dishes and direct injection is closer to that than pills.

                                    From internet search for PV-10 and melanoma.
                                    Advanced Melanoma Patients May Benefit from PV-10 : CancerConnect News
                                    Jul 6, 2011 … PV-10 is a drug that is being studied in clinical trials in cutaneous and subcutaneous melanoma metastases. PV-10 is a derivative of Rose .Bengal..
                                    news.cancerconnect.com/advanced-melanoma-patients-may-benefit-from-pv-10/
                                    Chemoablation of melanoma with intralesional rose bengal (PV-10 …
                                    In phase 1 testing in 20 subjects with AJCC Stage III (19 subjects) or IV (1 subject) melanoma, a single injection of PV-10 into 1-20 lesions led to durable …
                                    http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=34524
                                    PV-10 Melanoma Drug Trial Enrolls Patients in Compassionate Use …
                                    Nov 23, 2010 … PV-10 Melanoma Drug Trial Enrolls Patients in Compassionate Use Program – Elsevier Global Medical News. 2010 Nov 23, A Ault.
                                    http://www.oncologystat.com/news/PV-10_Melanoma_Drug_Trial_Enrolls_Patients_in_Compassionate_Use_Program_US.html;jsessionid=2B43E205367BB4EA9EE7BDB425F6633A

                                    Good luck..

                                  • July 13, 2011 at 11:53 pm
                                  James from Sydney
                                  Participant

                                    Have you considered something like PV10 which is injected into Subq's, it creats an immune response, apparently safe to use. There is another drug but i have forgotten the Company it could be Oncovex but it uses a combo of Herpes Virus and GMCSF and is also injected into Subq's both are still going through the Trial process. 

                                    I know your Onc will say he has systemic disease and working on one front will not solve the problem. I personally believe Melanoma must be attacked on several fronts. Both these drugs appear to have bystander effect and might also help eliminate cancer cells in surrounding tissue. 

                                     

                                    best wishes

                                    James

                                    • July 14, 2011 at 11:13 pm
                                    nickmac56
                                    Participant

                                      My wife is in similar situation. The only place that didn't say "no" out right was MD Anderson. I'd given them a call. 

                                        • August 17, 2011 at 5:54 pm
                                        mygirlmaddy
                                        Participant

                                          I know it's been a while, but I wanted to thank you for your suggestion.  MD Anderson was gracious in making suggestions, but feel that they do not have anything to offer at this time.  I appreciate you taking the time to respond.

                                          Audrey

                                          • August 17, 2011 at 5:54 pm
                                          mygirlmaddy
                                          Participant

                                            I know it's been a while, but I wanted to thank you for your suggestion.  MD Anderson was gracious in making suggestions, but feel that they do not have anything to offer at this time.  I appreciate you taking the time to respond.

                                            Audrey

                                          • July 14, 2011 at 11:13 pm
                                          nickmac56
                                          Participant

                                            My wife is in similar situation. The only place that didn't say "no" out right was MD Anderson. I'd given them a call. 

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