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When to stop?

Forums General Melanoma Community When to stop?

  • Post
    cheryl brodersen
    Participant

    How do you know when to stop chemo? My husband is Stage IV, has been for 2.5 years and last year underwent 19 treatments of DTIC. Now has just wrapped up 6 treatments (2 rounds) of abraxane/avastin (the breast cancer drug) and gets scanned tomorrow to see what effect if any the A/A chemo has had. This is 25 rounds of chemo. He is pretty sick most of the time. Quality of life sucks.

    How do you know when to stop chemo? My husband is Stage IV, has been for 2.5 years and last year underwent 19 treatments of DTIC. Now has just wrapped up 6 treatments (2 rounds) of abraxane/avastin (the breast cancer drug) and gets scanned tomorrow to see what effect if any the A/A chemo has had. This is 25 rounds of chemo. He is pretty sick most of the time. Quality of life sucks.

    So tomorrow, if the tumors are 'stable' or shrinking just a little, they are going to want to keep going with the chemo. When do you call it off and switch to another drug? He is BRAF positive and has never tried ipi or any of the MEK or GSK or that other new one…Evesia? Whatever, I just read about it on here! When do you make that call? What is the criteria that you use? It's so scary to take matters into your own hands. We love our oncologist–his oncologist, I should say–but I know he is going to want to keep going with the chemo. I'm afraid that it's going to make him too sick to ever bounce back. Does that make any sense?

    Also, where do I find the BRAF drug trial info? Sorry, I tried to google it, but didn't have much luck. I appreciate any help anyone can give me. I want us to make the right decision, to be proactive, but I would love to hear some other people's thoughts on this.

    Thanks to all of you!

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  • Replies
      Carol Taylor
      Participant

      You're making a lot of sense. Nowhere do you say your onc is a melanoma specialist. Is he? If he is, take matters in your own hands and insist he dialogue with you and your husband about other treatment options. If he's a specialist he should have no problem having that talk. You are right, you need to be well informed.

      If he's not a melanoma specialist, I'd advise that you take matters in your own hands and respectfully ask to see one…not ask him to consult on your behalf, but you & hubby go see one and have the discussion with that dr.

      My dear, it's too easy to let "matters" rest with others and go along and let them make the decisions for you. "Matters" should have been in your own hands all along. It's not too late but it's going to require you to use your mouth and speak up. Don't let anybody roll over you. This is your husband's life so therefore it's yours' too, As Ann Landers, or was it Dear Abby, use to say "Get a backbone."

      And if you've had a voice & backbone all along and have been using them and right now they're tired and overwhelmed…well, they'll just have to rest later.  Right now, your husband needs you to be his advocate and do this for him and you'll just have to find the strength to stick up for him & you and get the answers you need, from qualified people (not people you 'love') so the two of you can make the best possible decisions regarding his treatments that you can make.

      All the best!

      Carol

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      Carol Taylor
      Participant

      You're making a lot of sense. Nowhere do you say your onc is a melanoma specialist. Is he? If he is, take matters in your own hands and insist he dialogue with you and your husband about other treatment options. If he's a specialist he should have no problem having that talk. You are right, you need to be well informed.

      If he's not a melanoma specialist, I'd advise that you take matters in your own hands and respectfully ask to see one…not ask him to consult on your behalf, but you & hubby go see one and have the discussion with that dr.

      My dear, it's too easy to let "matters" rest with others and go along and let them make the decisions for you. "Matters" should have been in your own hands all along. It's not too late but it's going to require you to use your mouth and speak up. Don't let anybody roll over you. This is your husband's life so therefore it's yours' too, As Ann Landers, or was it Dear Abby, use to say "Get a backbone."

      And if you've had a voice & backbone all along and have been using them and right now they're tired and overwhelmed…well, they'll just have to rest later.  Right now, your husband needs you to be his advocate and do this for him and you'll just have to find the strength to stick up for him & you and get the answers you need, from qualified people (not people you 'love') so the two of you can make the best possible decisions regarding his treatments that you can make.

      All the best!

      Carol

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      cheryl brodersen
      Participant

      Thanks for your reply, Carol. We do have a mel specialist, probably the oldest and most respected one…in the world, at least that's what I've heard. We love him and feel confident and comfortable with him. What I don't know is how far down the chemo road a person can go and still come back to some semblance of normal health. We don't want him to just keep getting worse and yet proportionally the tumors are shrinking only a little. At some point the imbalance has to tip too far one way. I don't want to make that call too late–or too soon.

      Thanks again! We will continue to fight and advocate. I'm just trying to do the right thing here, and hoped some more input would help us see what the future looks like with a bunch more chemo! Cuz right now it isn't pretty!

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        Carol Taylor
        Participant

        Glad to hear you've got a great specialist!  If he's the world's most respected, he didn't get that rep by being the world's most ignorant.  Have those talks with him.

        You'll get more input I'm sure from here, but since we're in a frank world, let's be frank. You've been in the chemo rooms, you've seen the patients, you've seen the ugly. You know where you sit and what you're seeing with your husband right now. And you know we're all diferent, one person's travel down chemo-road isn't going to mirror someone elses.

        If he's getting worse and the tumors are only shrinking a little and you're asking probing questions about options, your gut's telling you something and depending on your religious beliefs, God may be trying to lead you. However you choose to look at it, you're questioning because you don't like what you're seeing and you know what the future holds if it doesn't change.

        If you really want hubby to start another treatment, even if your onc disagrees (and he might not disagree, he may go right along with you), then you find a way to make it happen!  Plain and simple. You find a way to make it happen, because if you don't, if the worst happens you will kick yourself the rest of your life and question the rest of your life "what if?"  I can't speak to your medical options, but as a pastor, I've seen too many families get stuck on "what if" and then it's too late, they can't relive that time of life and make a different decision.

        Now's the time to try other options if that's what you really want to do.

        http://www.facebook.com/notes/melanoma-prayer-center/in-praise-of-care-givers-unsung-heroes/139193609483364

        Grace and peace,

        Carol

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        cheryl brodersen
        Participant

        Thank you, Carol. Your words are heartening! It turned out the issue was not really an issue because the tumor shrinkage was so significant, stopping the chemo now, or 'changing horses midstream' as our oncologist said, was not a wise move. We did talk about revisiting a change after the next two rounds (3 treatments, 1 week off, 3tx 1 week off and scan). Also, I guess the Abraxane and Avastin combo  works on his brain tumor as the Avastin crosses the blood-brain barrier. So, I get it and am glad we all talked it out, also glad that the scan results were so good. Thanks again!

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        cheryl brodersen
        Participant

        Thank you, Carol. Your words are heartening! It turned out the issue was not really an issue because the tumor shrinkage was so significant, stopping the chemo now, or 'changing horses midstream' as our oncologist said, was not a wise move. We did talk about revisiting a change after the next two rounds (3 treatments, 1 week off, 3tx 1 week off and scan). Also, I guess the Abraxane and Avastin combo  works on his brain tumor as the Avastin crosses the blood-brain barrier. So, I get it and am glad we all talked it out, also glad that the scan results were so good. Thanks again!

        Loading spinner
        cheryl brodersen
        Participant

        Thank you, Carol. Your words are heartening! It turned out the issue was not really an issue because the tumor shrinkage was so significant, stopping the chemo now, or 'changing horses midstream' as our oncologist said, was not a wise move. We did talk about revisiting a change after the next two rounds (3 treatments, 1 week off, 3tx 1 week off and scan). Also, I guess the Abraxane and Avastin combo  works on his brain tumor as the Avastin crosses the blood-brain barrier. So, I get it and am glad we all talked it out, also glad that the scan results were so good. Thanks again!

        Loading spinner
        cheryl brodersen
        Participant

        Thank you, Carol. Your words are heartening! It turned out the issue was not really an issue because the tumor shrinkage was so significant, stopping the chemo now, or 'changing horses midstream' as our oncologist said, was not a wise move. We did talk about revisiting a change after the next two rounds (3 treatments, 1 week off, 3tx 1 week off and scan). Also, I guess the Abraxane and Avastin combo  works on his brain tumor as the Avastin crosses the blood-brain barrier. So, I get it and am glad we all talked it out, also glad that the scan results were so good. Thanks again!

        Loading spinner
        Carol Taylor
        Participant

        Glad to hear you've got a great specialist!  If he's the world's most respected, he didn't get that rep by being the world's most ignorant.  Have those talks with him.

        You'll get more input I'm sure from here, but since we're in a frank world, let's be frank. You've been in the chemo rooms, you've seen the patients, you've seen the ugly. You know where you sit and what you're seeing with your husband right now. And you know we're all diferent, one person's travel down chemo-road isn't going to mirror someone elses.

        If he's getting worse and the tumors are only shrinking a little and you're asking probing questions about options, your gut's telling you something and depending on your religious beliefs, God may be trying to lead you. However you choose to look at it, you're questioning because you don't like what you're seeing and you know what the future holds if it doesn't change.

        If you really want hubby to start another treatment, even if your onc disagrees (and he might not disagree, he may go right along with you), then you find a way to make it happen!  Plain and simple. You find a way to make it happen, because if you don't, if the worst happens you will kick yourself the rest of your life and question the rest of your life "what if?"  I can't speak to your medical options, but as a pastor, I've seen too many families get stuck on "what if" and then it's too late, they can't relive that time of life and make a different decision.

        Now's the time to try other options if that's what you really want to do.

        http://www.facebook.com/notes/melanoma-prayer-center/in-praise-of-care-givers-unsung-heroes/139193609483364

        Grace and peace,

        Carol

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      cheryl brodersen
      Participant

      Thanks for your reply, Carol. We do have a mel specialist, probably the oldest and most respected one…in the world, at least that's what I've heard. We love him and feel confident and comfortable with him. What I don't know is how far down the chemo road a person can go and still come back to some semblance of normal health. We don't want him to just keep getting worse and yet proportionally the tumors are shrinking only a little. At some point the imbalance has to tip too far one way. I don't want to make that call too late–or too soon.

      Thanks again! We will continue to fight and advocate. I'm just trying to do the right thing here, and hoped some more input would help us see what the future looks like with a bunch more chemo! Cuz right now it isn't pretty!

      Loading spinner
      Lori C
      Participant

      Here was our experience.  Will tried a ipi/placebo trial (almost certainly got placebo), then DTIC, then biochemotherapy, then taxol and carboplatin.    By the time he did the DTIC, his tumor burden was very high, his LDH was high, and we were always behind the curve. 

      Eventually, the liver mets and the chemo compromised his liver too severely and he wasn't able to live with that.  The last six months of his life were difficult.  The quality of life was bad.  But it wasn't from the chemo per se. It was from the cancer, mostly. 

      There are many things I wish we had done differently.  But the choice to keep treating was Will's and it gave us hope, which was perhaps what allowed us to have a better quality of life those last six months.

      I can't make a real suggestion for anyone else.  Can the chemo side effects be managed?  Would the side effects from the cancer be just as bad?  These all have to be taken into account, I think….

      Thinking of you and wishing you the very best.

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        cheryl brodersen
        Participant

        Thank you, Lori, and I'm so sorry you lost your husband. I cannot imagine, and if I try it is unbearable. It's like I want to feel the pain and get it out of the way, prepare for it, but I know that it doesn't work that way. I know you can never be prepared for the empty space, that person's energy simply not being in the world anymore. I know when my mother died of cancer, I was with her in the end and, though I know what I know about physiology and death, I had the strangest compulsion to look for her, even when her body was right in front of me! She simply was no longer there. Intellectually I get it, but I really did halfway look around like, "Where is she? She was just here."  It was the strangest feeling.

        Today went well. The scan showed way significant tumor shrinkage, so onward for two more rounds of three treatments each.

        Stay in touch! I appreciate what you said about the cancer or the chemo. That really is what it is, and ultimately, that is Steve's decision and he still wants to fight. I'm totally behind him.

        Take care!

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        cheryl brodersen
        Participant

        Thank you, Lori, and I'm so sorry you lost your husband. I cannot imagine, and if I try it is unbearable. It's like I want to feel the pain and get it out of the way, prepare for it, but I know that it doesn't work that way. I know you can never be prepared for the empty space, that person's energy simply not being in the world anymore. I know when my mother died of cancer, I was with her in the end and, though I know what I know about physiology and death, I had the strangest compulsion to look for her, even when her body was right in front of me! She simply was no longer there. Intellectually I get it, but I really did halfway look around like, "Where is she? She was just here."  It was the strangest feeling.

        Today went well. The scan showed way significant tumor shrinkage, so onward for two more rounds of three treatments each.

        Stay in touch! I appreciate what you said about the cancer or the chemo. That really is what it is, and ultimately, that is Steve's decision and he still wants to fight. I'm totally behind him.

        Take care!

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      Lori C
      Participant

      Here was our experience.  Will tried a ipi/placebo trial (almost certainly got placebo), then DTIC, then biochemotherapy, then taxol and carboplatin.    By the time he did the DTIC, his tumor burden was very high, his LDH was high, and we were always behind the curve. 

      Eventually, the liver mets and the chemo compromised his liver too severely and he wasn't able to live with that.  The last six months of his life were difficult.  The quality of life was bad.  But it wasn't from the chemo per se. It was from the cancer, mostly. 

      There are many things I wish we had done differently.  But the choice to keep treating was Will's and it gave us hope, which was perhaps what allowed us to have a better quality of life those last six months.

      I can't make a real suggestion for anyone else.  Can the chemo side effects be managed?  Would the side effects from the cancer be just as bad?  These all have to be taken into account, I think….

      Thinking of you and wishing you the very best.

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      FormerCaregiver
      Participant

      Chemo can certainly make people very sick, and it is an unsophisticated
      method of reducing the amount of cancer cells in the body. My late wife
      could only tolerate a few infusions of chemo before it was determined that
      the treatment had stopped working. Her quality of life was not good for the
      year that she was stage IV.

      These days there are much better drugs that are becoming available to some
      patients. However, there are still a lot that doctors don't know about this
      insidious disease.

      Here is a link to info about BRAF drug trials:
      http://www.clinicaltrials.gov/ct2/results?term=melanoma+braf&recr=&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=NA%3AUS&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

      So, when does one know when to stop chemo? I think that one part of the
      answer to this is "as soon a better treatment is found". Other parts of the
      answer would depend on medical opinions, personal opinions, and quality of
      life issues.

      Hope this helps.

      Frank

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        cheryl brodersen
        Participant

        Frank,

        It does help, thank you. I didn't realize there was a search feature on the clinical trials website, thanks for that.

        And it is unsophisticated, isn't it? I remember living in California when they dumped malathion from planes to kill the fruitfly in the 1980s. What a disaster! That's what this feels like.

        The scans were great today, so my husband is going to continue the chemo for two more rounds. We'll reevaluate then and have some other options lined up as possibilities.

        I appreciate you taking the time to reply. This discussion board is so helpful!

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        cheryl brodersen
        Participant

        Frank,

        It does help, thank you. I didn't realize there was a search feature on the clinical trials website, thanks for that.

        And it is unsophisticated, isn't it? I remember living in California when they dumped malathion from planes to kill the fruitfly in the 1980s. What a disaster! That's what this feels like.

        The scans were great today, so my husband is going to continue the chemo for two more rounds. We'll reevaluate then and have some other options lined up as possibilities.

        I appreciate you taking the time to reply. This discussion board is so helpful!

        Loading spinner
      FormerCaregiver
      Participant

      Chemo can certainly make people very sick, and it is an unsophisticated
      method of reducing the amount of cancer cells in the body. My late wife
      could only tolerate a few infusions of chemo before it was determined that
      the treatment had stopped working. Her quality of life was not good for the
      year that she was stage IV.

      These days there are much better drugs that are becoming available to some
      patients. However, there are still a lot that doctors don't know about this
      insidious disease.

      Here is a link to info about BRAF drug trials:
      http://www.clinicaltrials.gov/ct2/results?term=melanoma+braf&recr=&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=NA%3AUS&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

      So, when does one know when to stop chemo? I think that one part of the
      answer to this is "as soon a better treatment is found". Other parts of the
      answer would depend on medical opinions, personal opinions, and quality of
      life issues.

      Hope this helps.

      Frank

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