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Keep failing treatments – is the next one nessecary?

Forums General Melanoma Community Keep failing treatments – is the next one nessecary?

  • Post
    mkummerle
    Participant

      Diagnosed Stage IV March '09.  Bone Mets to spine several tumors throughout body and lyphnodes.   Tried Interferon for nine months, GMC-SF for four months, Interleukin II,  Temodar and Ipilimamub.  Negative for BRAF.  All have been failed treatments.  Next line of therapy will be standard Chemo with Carboplatin and Taxol.  I'm  feeling like nothings going to get me a response.  Feeling like it's not worth it to start next treatment only to be set up for failure again.  I'm about ready to just let it take its course.&nbsp

      Diagnosed Stage IV March '09.  Bone Mets to spine several tumors throughout body and lyphnodes.   Tried Interferon for nine months, GMC-SF for four months, Interleukin II,  Temodar and Ipilimamub.  Negative for BRAF.  All have been failed treatments.  Next line of therapy will be standard Chemo with Carboplatin and Taxol.  I'm  feeling like nothings going to get me a response.  Feeling like it's not worth it to start next treatment only to be set up for failure again.  I'm about ready to just let it take its course.  Just venting, thats what this board is for!   Thanks all!

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        Jerry from Cape Cod
        Participant

          Vent al you want.  It's not an easy course.  I'm sure others will join in with their own experiences.  I'm just curious was the Temodar and Ipi the combo trial or was it 2 seperate arms?  Basically almost all treatments are still trials and some with blind arms.  Treatment for melanoma is so individual it's enought to drive one crazy.

          Good luck with your decisions and my thoughts are with you.

          Jerry from Cape Cod

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          Jerry from Cape Cod
          Participant

            Vent al you want.  It's not an easy course.  I'm sure others will join in with their own experiences.  I'm just curious was the Temodar and Ipi the combo trial or was it 2 seperate arms?  Basically almost all treatments are still trials and some with blind arms.  Treatment for melanoma is so individual it's enought to drive one crazy.

            Good luck with your decisions and my thoughts are with you.

            Jerry from Cape Cod

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            Tim–MRF
            Guest

              You are sharing one of the most difficult decisions patients have to face–when is it time to stop trying new things.  No-one can really determine the answer for you.  I suspect that no matter what you decide you will have second thoughts.  I also believe that whatever decision you make, it will be the right decision for you.  No-one else can make the call or second guess your choice.

              I won't offer advice here.  I don't think that is what you are looking for, and it probably isn't what you need.  Having said that, I suggest you consider three questions:

              –Do you feel comfortable that you understand your treatment options at this point, including the side effects, risks, and potential benefits?

              –Have you had the opportunity to review this decision to your support team:  family, friends, etc.?

              –Have you given yourself enough time to process this decision and feel comfortable that it is, to the extent possible, a proactive decision rather than a reactive decision?

              I have known people who decided at some point that they had gone through enough, and it was time to quit trying new approaches.  Their decision and approach to that decision was impressive.

              I have also known people who fought tooth and nail through every conceivable therapeutic approach.  Their decision and approach was equally impressive.

              What is common to both is that these people gathered all the information and support they could, then made a decision that reflected their priorities and values.  In other words, they empowered themselves to take control of their life and their cancer. 

              Thank you for posting about your struggle and your thoughts.  Your post will, I am sure, help many others as they think through similar choices.

              Tim–MRF

               

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              Tim–MRF
              Guest

                You are sharing one of the most difficult decisions patients have to face–when is it time to stop trying new things.  No-one can really determine the answer for you.  I suspect that no matter what you decide you will have second thoughts.  I also believe that whatever decision you make, it will be the right decision for you.  No-one else can make the call or second guess your choice.

                I won't offer advice here.  I don't think that is what you are looking for, and it probably isn't what you need.  Having said that, I suggest you consider three questions:

                –Do you feel comfortable that you understand your treatment options at this point, including the side effects, risks, and potential benefits?

                –Have you had the opportunity to review this decision to your support team:  family, friends, etc.?

                –Have you given yourself enough time to process this decision and feel comfortable that it is, to the extent possible, a proactive decision rather than a reactive decision?

                I have known people who decided at some point that they had gone through enough, and it was time to quit trying new approaches.  Their decision and approach to that decision was impressive.

                I have also known people who fought tooth and nail through every conceivable therapeutic approach.  Their decision and approach was equally impressive.

                What is common to both is that these people gathered all the information and support they could, then made a decision that reflected their priorities and values.  In other words, they empowered themselves to take control of their life and their cancer. 

                Thank you for posting about your struggle and your thoughts.  Your post will, I am sure, help many others as they think through similar choices.

                Tim–MRF

                 

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                Lori C
                Participant

                  I know you said you were venting and did not ask for suggestions.  I just wanted to share with you what Will's doctor, Howard Kaufman of Rush in Chicago, said (Will was also on Taxol and Carboplatin):  "Nothing works and nothing works and then – something works."  That said, by the time Will reached the point of using the taxol & carbo, it seems his liver was already too compromised to endure the toxicity despite it shrinking the tumors.  I am certain of this:  it's a decision no one can anticipate or prepare for until you are in it.   It's also a decision that no one has a right to judge, either way, for another.   If you do choose to undergo the chemo, maybe you can  set up support through palliative care that can help you with nutritional support and other things if at all possible. I wish I'd done that.  It's not hospice in the sense that it doesn't mean you are abandoning or whatever the word is, active treatment, only that you need additional support at an advanced stage.

                  WIshing you the very best with whatever choice you make.

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                  Lori C
                  Participant

                    I know you said you were venting and did not ask for suggestions.  I just wanted to share with you what Will's doctor, Howard Kaufman of Rush in Chicago, said (Will was also on Taxol and Carboplatin):  "Nothing works and nothing works and then – something works."  That said, by the time Will reached the point of using the taxol & carbo, it seems his liver was already too compromised to endure the toxicity despite it shrinking the tumors.  I am certain of this:  it's a decision no one can anticipate or prepare for until you are in it.   It's also a decision that no one has a right to judge, either way, for another.   If you do choose to undergo the chemo, maybe you can  set up support through palliative care that can help you with nutritional support and other things if at all possible. I wish I'd done that.  It's not hospice in the sense that it doesn't mean you are abandoning or whatever the word is, active treatment, only that you need additional support at an advanced stage.

                    WIshing you the very best with whatever choice you make.

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                      NicOz
                      Participant

                        I really enjoyed that quote, Lori. I think I will keep that one filed away for my own use.

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                        NicOz
                        Participant

                          I really enjoyed that quote, Lori. I think I will keep that one filed away for my own use.

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                        beatricefromPARIS
                        Participant

                          Hi M.K.

                          Tough period for you…

                          It sounds like my story except I did 6 molecules in two years in a different order…Sometimes, in between waiting scan results and treatments, I have asked myself the same question as you.

                          But all-in-all I find the psychological impact of "doing nothing" worse for morale (guilt, fear, weariness, what-if feelings, etc) than a nasty treatment, if my system can still take it. At least, action is happening and I have done my duty against adversity.

                          We have a guy here in France who is a symbol of extreme resilience : he started as a pop singer, became a millionair, part of govt, then bankrupt, then in prison, then out of prison, then a popular TV actor in order to earn his life, then earned back his wealth through the courts, etc..His favourite quote is something like "the worse is never certain". His fighting spirit is incredible and quite inspiring although the man is perhaps questionable. 

                          To entice the public, national lottery here has a silly ad punch line : "100% of those who won have played" . Quite undisputable.

                          Better newer treatments may appear in the future so let's give ourselves all chances, even slim, to be there when they come to market. At least what we experience may help our children one day.

                          If you think you improve your chances by resting and recovering for a while, rather than switching immediately to a new chemo, that's a perfectly valid option. But keep up! We support you and need all fighters, whether at the front line or at the back for a while…!

                           

                           

                           

                           

                           

                           

                           

                           

                           

                           

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                          beatricefromPARIS
                          Participant

                            Hi M.K.

                            Tough period for you…

                            It sounds like my story except I did 6 molecules in two years in a different order…Sometimes, in between waiting scan results and treatments, I have asked myself the same question as you.

                            But all-in-all I find the psychological impact of "doing nothing" worse for morale (guilt, fear, weariness, what-if feelings, etc) than a nasty treatment, if my system can still take it. At least, action is happening and I have done my duty against adversity.

                            We have a guy here in France who is a symbol of extreme resilience : he started as a pop singer, became a millionair, part of govt, then bankrupt, then in prison, then out of prison, then a popular TV actor in order to earn his life, then earned back his wealth through the courts, etc..His favourite quote is something like "the worse is never certain". His fighting spirit is incredible and quite inspiring although the man is perhaps questionable. 

                            To entice the public, national lottery here has a silly ad punch line : "100% of those who won have played" . Quite undisputable.

                            Better newer treatments may appear in the future so let's give ourselves all chances, even slim, to be there when they come to market. At least what we experience may help our children one day.

                            If you think you improve your chances by resting and recovering for a while, rather than switching immediately to a new chemo, that's a perfectly valid option. But keep up! We support you and need all fighters, whether at the front line or at the back for a while…!

                             

                             

                             

                             

                             

                             

                             

                             

                             

                             

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                            NicOz
                            Participant

                              As has been mentioned, this isn't something anyone can advise you on, being so intensely personal, but it certainly the place to vent.

                              From my perspective, I found myself very close at the end of last year to wondering if I could continue to keep doing what I've been doing. It wasn't that I didn't WANT to keep going, though. I was just completely exhausted. So I had a good long think about what I wanted to do, and why, and then concentrated on what was right for ME- getting my energy levels back up where they needed to be. However, others have chosen differently, and it is not a decision that anyone should feel they can judge another for.

                              Many of the point Tim has raised are right on the money. Those are the things you need to consider/address in order to make your decision an informed and pro-active decision. Regardless of your choice, it is yours and yours alone. Many people make a decision along these lines, and in the case of a disease like this (which can resemble a chronic illness with the different treatments being tried), as circumstances change the decision is reevaluated at regular intervals.

                              It's a very difficult position to be in. Perhaps talking with a profesisonal might help you? Shed a little more light on exactly why you're feeling this way and provide you with some mechanisms to help?

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                              NicOz
                              Participant

                                As has been mentioned, this isn't something anyone can advise you on, being so intensely personal, but it certainly the place to vent.

                                From my perspective, I found myself very close at the end of last year to wondering if I could continue to keep doing what I've been doing. It wasn't that I didn't WANT to keep going, though. I was just completely exhausted. So I had a good long think about what I wanted to do, and why, and then concentrated on what was right for ME- getting my energy levels back up where they needed to be. However, others have chosen differently, and it is not a decision that anyone should feel they can judge another for.

                                Many of the point Tim has raised are right on the money. Those are the things you need to consider/address in order to make your decision an informed and pro-active decision. Regardless of your choice, it is yours and yours alone. Many people make a decision along these lines, and in the case of a disease like this (which can resemble a chronic illness with the different treatments being tried), as circumstances change the decision is reevaluated at regular intervals.

                                It's a very difficult position to be in. Perhaps talking with a profesisonal might help you? Shed a little more light on exactly why you're feeling this way and provide you with some mechanisms to help?

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