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would appreciate success stories from “traditional” chemo

Forums General Melanoma Community would appreciate success stories from “traditional” chemo

  • Post
    nj-Mark
    Participant

      Hi All,

      First time posting on the "new" MPIP board; very fancy!

      So, i'm out on disability now and am pondering my next steps after washing out of the PLX-4032 trial in early August.   (I took August off to spend time with my kids.)  I now have a number of large (3×5 inch) tumors encasing arteries and muscles in my back and groin, and numerous involved lymph nodes elsewhere.

      Hi All,

      First time posting on the "new" MPIP board; very fancy!

      So, i'm out on disability now and am pondering my next steps after washing out of the PLX-4032 trial in early August.   (I took August off to spend time with my kids.)  I now have a number of large (3×5 inch) tumors encasing arteries and muscles in my back and groin, and numerous involved lymph nodes elsewhere.

      My doctors have suggested I try single agent DTIC or Temador, or polychemotherapy such as CVD (dacarbazine, cisplatinum and vindesine) as an approach.   As I read about these in the literature and on MPIP it is really hard to find success stories of durable response to these treatments.    I was a great responder to PLX (70% tumor reduction) but in the end they all came back and then some.

      I would very much appreciate hearing from anyone who has (or has cared for someone who has) undergone these treatments.   Worthwhile?  Gateway to other treatments that helped?

      Best of luck to everyone,
      -Mark

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    • Replies
        James from Sydney
        Participant

          Hi Mark

          Our son had Temador with no success although i do remember reading others have had success. I think that if you are up for it then Bio Chemo might be worth looking at. It is a combo of 3 chemos and IL2 and IFN. 

          If you had success with PLX have you considered a MEK inhibitor which works in a similar way as PLX but is downstream, otherwise Ippilimumab is in Trial with Temador and maybe a good alternative.

          best wishes

          James

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          James from Sydney
          Participant

            Hi Mark

            Our son had Temador with no success although i do remember reading others have had success. I think that if you are up for it then Bio Chemo might be worth looking at. It is a combo of 3 chemos and IL2 and IFN. 

            If you had success with PLX have you considered a MEK inhibitor which works in a similar way as PLX but is downstream, otherwise Ippilimumab is in Trial with Temador and maybe a good alternative.

            best wishes

            James

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            SandraDee
            Participant

              Funny you shoiuld ask,  Mark!  I find myself facing the same situation, and it's not setting well with me.  I'll be interested in seeing if your post provides any positive feedback.

              I want ipi, but with possible mets to the small intestine, that is not an option at this point.  Both doctor here in Buffalo, as well as a second opinion at Sloan Kettering, have strongly suggested I try Temodar as my next option.  I have 2 issues with that; one being that I know of nobody that this drug has shown great results for, and secondly, it goes against every grain of my being to pump poisen into my body while stopping all of my herbs, supplements, etc, as suggested I would need to do. 

              Have you tried IL-2 yet, Mark?  That is a tough one, but did lessen my tumor load back in 07-08. 

              Let's hope we get some positive feedback, Mark.  IN the meantime, blessings to you.

              Sandy – Buffalo

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                nj-Mark
                Participant

                  Hi Sandy,

                  This is a tough call, for sure.   I've also had two opinions–one from Sloan Kettering as well–and the attitude seems to be that we should "try something" even if it has a small chance of working.  SK admits that polychemo treatments don't demonstrate any overall survival benefit to DTIC/Temodar even though the initial response rates are higher.  

                  I appreciate the suggestions for alternate treatments (I'm working on a possible IPI trial).  But I'd really like to hear about *any* traditional chemo success stories.   I'm sure many people have experienced these treatments as they are so commonly offered.

                  Take care, Mark

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                  nj-Mark
                  Participant

                    Hi Sandy,

                    This is a tough call, for sure.   I've also had two opinions–one from Sloan Kettering as well–and the attitude seems to be that we should "try something" even if it has a small chance of working.  SK admits that polychemo treatments don't demonstrate any overall survival benefit to DTIC/Temodar even though the initial response rates are higher.  

                    I appreciate the suggestions for alternate treatments (I'm working on a possible IPI trial).  But I'd really like to hear about *any* traditional chemo success stories.   I'm sure many people have experienced these treatments as they are so commonly offered.

                    Take care, Mark

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                  SandraDee
                  Participant

                    Funny you shoiuld ask,  Mark!  I find myself facing the same situation, and it's not setting well with me.  I'll be interested in seeing if your post provides any positive feedback.

                    I want ipi, but with possible mets to the small intestine, that is not an option at this point.  Both doctor here in Buffalo, as well as a second opinion at Sloan Kettering, have strongly suggested I try Temodar as my next option.  I have 2 issues with that; one being that I know of nobody that this drug has shown great results for, and secondly, it goes against every grain of my being to pump poisen into my body while stopping all of my herbs, supplements, etc, as suggested I would need to do. 

                    Have you tried IL-2 yet, Mark?  That is a tough one, but did lessen my tumor load back in 07-08. 

                    Let's hope we get some positive feedback, Mark.  IN the meantime, blessings to you.

                    Sandy – Buffalo

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                    Kevin from Atlanta
                    Participant

                      I took them all every three weeks for 18 months. DTIC , Temador, dacarbazine, cisplatinum, visplatin, Avastin and Abraxne. It stopped the progression and we saw good regression towards the end. My blood test got real bad so we reverted to two chemos and the mets all came back. If I am not a late responder for Ipi, I will probably go to a multi-chemo treatment.

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                        nj-Mark
                        Participant

                          Kevin,

                          Thanks very much for sharing your experience.   Good luck on the IPI response and I trust you will continue to win the battle.

                          -Mark

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                          nj-Mark
                          Participant

                            Kevin,

                            Thanks very much for sharing your experience.   Good luck on the IPI response and I trust you will continue to win the battle.

                            -Mark

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                            nj-Mark
                            Participant

                              Kevin,

                              Thanks very much for sharing your experience.   Good luck on the IPI response and I trust you will continue to win the battle.

                              -Mark

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                              nj-Mark
                              Participant

                                Kevin,

                                Thanks very much for sharing your experience.   Good luck on the IPI response and I trust you will continue to win the battle.

                                -Mark

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                              Kevin from Atlanta
                              Participant

                                I took them all every three weeks for 18 months. DTIC , Temador, dacarbazine, cisplatinum, visplatin, Avastin and Abraxne. It stopped the progression and we saw good regression towards the end. My blood test got real bad so we reverted to two chemos and the mets all came back. If I am not a late responder for Ipi, I will probably go to a multi-chemo treatment.

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                                JenM
                                Participant
                                  Hi Mark,
                                  I am stage 4 with disease in the brain and left breast. I had gamma knife to the brain 7/8 and started temodar, vinblastin and cisplatnium on 6/31. I had a PET/CT scan before chemotherapy started and had an SUV uptake of 8 in the breast area. I completed 3 cycles of chemo and by the third chemotherapy cycle I had a very bad time with nausea/vomiting. Docs were concerned thinkining it might be disease rather than the chemotherapy related (b/c the nausea/vomiting started before the chemotherapy…during my “good week.”). So had another PETCT after 3 cycles and the SUV uptake went down to 3. It’s an almost partial response, I am also on Nexavar/Sorafenib (poor man’s BRAF inhibitor) which I started 7/30.

                                  But I am stopping the cisplatnium & vinblastine….cannot tolerate it…too much nausea + vomiting+ fatigue. I am down to 98 pounds. My doc really wants me to be able tolerate temodar + nexavar…..thinks it might keep me stable but for how long? That’s the million dollar question. We think the source of the nausea+vomiting in the 3rd cycle was the nexavar so perhaps a reduced dose will still work.

                                  My doc always said that eventually everyone fails this chemotherapy (cisplatnium+vinblastine) regimen. But there is always a sprinkling of
                                  people who get long term benefit. I know by your post that you are looking for them.

                                  So I don’t have a very long response rate at all….too early to tell yet.
                                  But I shared my story anyway….hope it helped.

                                  All the best to you,
                                  Jen

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                                  JenM
                                  Participant
                                    Hi Mark,
                                    I am stage 4 with disease in the brain and left breast. I had gamma knife to the brain 7/8 and started temodar, vinblastin and cisplatnium on 6/31. I had a PET/CT scan before chemotherapy started and had an SUV uptake of 8 in the breast area. I completed 3 cycles of chemo and by the third chemotherapy cycle I had a very bad time with nausea/vomiting. Docs were concerned thinkining it might be disease rather than the chemotherapy related (b/c the nausea/vomiting started before the chemotherapy…during my “good week.”). So had another PETCT after 3 cycles and the SUV uptake went down to 3. It’s an almost partial response, I am also on Nexavar/Sorafenib (poor man’s BRAF inhibitor) which I started 7/30.

                                    But I am stopping the cisplatnium & vinblastine….cannot tolerate it…too much nausea + vomiting+ fatigue. I am down to 98 pounds. My doc really wants me to be able tolerate temodar + nexavar…..thinks it might keep me stable but for how long? That’s the million dollar question. We think the source of the nausea+vomiting in the 3rd cycle was the nexavar so perhaps a reduced dose will still work.

                                    My doc always said that eventually everyone fails this chemotherapy (cisplatnium+vinblastine) regimen. But there is always a sprinkling of
                                    people who get long term benefit. I know by your post that you are looking for them.

                                    So I don’t have a very long response rate at all….too early to tell yet.
                                    But I shared my story anyway….hope it helped.

                                    All the best to you,
                                    Jen

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                                      nj-Mark
                                      Participant

                                        Jen,

                                        Thanks so much for sharing your experiences.   Sounds like you have experienced considerable side effects from your treatment but the verdict is still out on if it helped.   I certainly hope it does; you have gone through a lot!

                                        To help me with my personal decision about if I should undergo chemo/polychemo treatment I cross-posted my question to the MIF board and also got fairly tepid responses.   One well-informed poster said that "I can't think of any success stories with the agents you mention.  I have heard from those who had tumor regression, but not a cure."

                                        Perhaps the deciding factor for me today was reading the NYT's article on ethical considerations in the stage II PLX4032 trial.  (I was in that trial, and randomized to the PLX4032 wing.) 

                                        http://www.nytimes.com/2010/09/19/health/research/19trial.html?_r=1&pagewanted=1

                                        I could not believe the comments from doctors–one who has seen my case professionally–acknowledging the futility of DBIC (and by analogue Temador) treatments given that this is my prescribed next treatment regime.   We passed on polychemo approaches because even though they have higher response rates they showed no survival benefit over DBIC.   And they want me to try something they don't even think works?

                                        Best luck with your health,
                                         -Mark

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                                        Jocelyn
                                        Participant

                                          Another thing about DTIC–I think sometimes it is used when patients are "between treatments" or waiting for something better to become available. It has show little long-term benefit, but in a some patients it might slow things down  until they can find something better. I believe when it was approved by FDA for melanoma years ago, it just bearly increased life expectancy enough to make it. We have to remember how little has been available for this beast. Sadly, DTIC is still often the yardstick against which the effectiveness of trial drugs are measured. Hopefully this will change with the success of the newer treatments.

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                                          Jocelyn
                                          Participant

                                            Another thing about DTIC–I think sometimes it is used when patients are "between treatments" or waiting for something better to become available. It has show little long-term benefit, but in a some patients it might slow things down  until they can find something better. I believe when it was approved by FDA for melanoma years ago, it just bearly increased life expectancy enough to make it. We have to remember how little has been available for this beast. Sadly, DTIC is still often the yardstick against which the effectiveness of trial drugs are measured. Hopefully this will change with the success of the newer treatments.

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                                            James from Sydney
                                            Participant

                                              Hi Mark

                                              i picked up on a point your Doctor and many others state, that is, certain drugs have a higher response rate but in the end they show no survival benefit.  The overall survival benefit may be the same, but what if one drug gives you an extra 6 months and therefore enough time to try one of the new drugs. I would have given anything to keep my son alive so he could have started the new BRAF Trials which only commenced 2 months after his passing. Tell that to your Doctor and see if he thinks prolonged response means anything.

                                              best wishes

                                              James

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                                              nj-Mark
                                              Participant

                                                James,

                                                I'm so sorry to hear of the loss of your son….

                                                I think we are in agreement here; if a drug gives someone an extra 6 months of life that is a great treatment result.    If a treatment doesn't add life expectancy I would want to carefully trade quality of life issues from treatment vs. letting things run their course.

                                                -Mark

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                                                Lori C
                                                Participant

                                                  Will is on Taxol and Cisplatin.  The goal is to keep him alive and hopefully reduce tumor burden so that he can participate in either the Oncovax trial, finally get ipi (if it is approved in time).  The doctor made it clear that chemo does not cure melanoma, but he said that this regime has had good responses in stage IV patients.  This is Dr. Howard Kaufman (formerly of Columbia NYC now at Rush in Chicago). 

                                                  Will's liver was about 80% compromised with tumors.  They are now smaller.  We are one month closer to ipi being approved.  I figure that is worth it – but I realize it's a difficult and individual choice.

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                                                  elainejorden
                                                  Participant

                                                    Sorry to post late on this subject but I finally got my computer gliches solved.I'm a stage iV and responded very well to DTIC,carmustine and cystplatin which I took after my 3rd reoccurance in 2004 until 2007 and have had neg. scans since.I feel very positive with the results even though it was a rugged 2-1/2 years in treatment. I feel more confident every day as there's more to offer now if another incident occurs.I do enjoy life but am still aware that it is so unpredictable I"ve seen  many improvemnts being offered since I started this journey 20 years..Elaine(Canada)

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                                                    elainejorden
                                                    Participant

                                                      Sorry to post late on this subject but I finally got my computer gliches solved.I'm a stage iV and responded very well to DTIC,carmustine and cystplatin which I took after my 3rd reoccurance in 2004 until 2007 and have had neg. scans since.I feel very positive with the results even though it was a rugged 2-1/2 years in treatment. I feel more confident every day as there's more to offer now if another incident occurs.I do enjoy life but am still aware that it is so unpredictable I"ve seen  many improvemnts being offered since I started this journey 20 years..Elaine(Canada)

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                                                      Lori C
                                                      Participant

                                                        Will is on Taxol and Cisplatin.  The goal is to keep him alive and hopefully reduce tumor burden so that he can participate in either the Oncovax trial, finally get ipi (if it is approved in time).  The doctor made it clear that chemo does not cure melanoma, but he said that this regime has had good responses in stage IV patients.  This is Dr. Howard Kaufman (formerly of Columbia NYC now at Rush in Chicago). 

                                                        Will's liver was about 80% compromised with tumors.  They are now smaller.  We are one month closer to ipi being approved.  I figure that is worth it – but I realize it's a difficult and individual choice.

                                                        Loading spinner
                                                        nj-Mark
                                                        Participant

                                                          James,

                                                          I'm so sorry to hear of the loss of your son….

                                                          I think we are in agreement here; if a drug gives someone an extra 6 months of life that is a great treatment result.    If a treatment doesn't add life expectancy I would want to carefully trade quality of life issues from treatment vs. letting things run their course.

                                                          -Mark

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                                                          James from Sydney
                                                          Participant

                                                            Hi Mark

                                                            i picked up on a point your Doctor and many others state, that is, certain drugs have a higher response rate but in the end they show no survival benefit.  The overall survival benefit may be the same, but what if one drug gives you an extra 6 months and therefore enough time to try one of the new drugs. I would have given anything to keep my son alive so he could have started the new BRAF Trials which only commenced 2 months after his passing. Tell that to your Doctor and see if he thinks prolonged response means anything.

                                                            best wishes

                                                            James

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                                                            nj-Mark
                                                            Participant

                                                              Jen,

                                                              Thanks so much for sharing your experiences.   Sounds like you have experienced considerable side effects from your treatment but the verdict is still out on if it helped.   I certainly hope it does; you have gone through a lot!

                                                              To help me with my personal decision about if I should undergo chemo/polychemo treatment I cross-posted my question to the MIF board and also got fairly tepid responses.   One well-informed poster said that "I can't think of any success stories with the agents you mention.  I have heard from those who had tumor regression, but not a cure."

                                                              Perhaps the deciding factor for me today was reading the NYT's article on ethical considerations in the stage II PLX4032 trial.  (I was in that trial, and randomized to the PLX4032 wing.) 

                                                              http://www.nytimes.com/2010/09/19/health/research/19trial.html?_r=1&pagewanted=1

                                                              I could not believe the comments from doctors–one who has seen my case professionally–acknowledging the futility of DBIC (and by analogue Temador) treatments given that this is my prescribed next treatment regime.   We passed on polychemo approaches because even though they have higher response rates they showed no survival benefit over DBIC.   And they want me to try something they don't even think works?

                                                              Best luck with your health,
                                                               -Mark

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