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Hope it helped & our next steps

Forums Cutaneous Melanoma Community Hope it helped & our next steps

  • Post
    JenC
    Participant

    My husband has been on the control arm of the BRAF trial, and as we expected the DTIC did not work.  We were obviously hopeful that he could have gotten the study drug and were willing to give the DTIC a shot, but I am now hoping that we didn't sacrifice precious time.  He went into the trial with maybe half a dozen subcutaneous tumors and is leaving it with spots in his lung, liver and a golf ball sized tumor in his face and constant pain.  Hopefully his participation helped further the FDA approval of the drug.

    The next step is high dose IL2.

    JenC

    My husband has been on the control arm of the BRAF trial, and as we expected the DTIC did not work.  We were obviously hopeful that he could have gotten the study drug and were willing to give the DTIC a shot, but I am now hoping that we didn't sacrifice precious time.  He went into the trial with maybe half a dozen subcutaneous tumors and is leaving it with spots in his lung, liver and a golf ball sized tumor in his face and constant pain.  Hopefully his participation helped further the FDA approval of the drug.

    The next step is high dose IL2.

    JenC

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  • Replies
      Sherron
      Participant

      Jen,

      Sorry things did not go as you had  hoped.  I hope that the next treatment will help…Thinking of you both, and wishing you both good things to come in the next line of treatment.  I hope they are giving him something for the pain.

      Take Care,

      Sherron, wife to Jim

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      Sherron
      Participant

      Jen,

      Sorry things did not go as you had  hoped.  I hope that the next treatment will help…Thinking of you both, and wishing you both good things to come in the next line of treatment.  I hope they are giving him something for the pain.

      Take Care,

      Sherron, wife to Jim

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      lhaley
      Participant

      Jen,

      I am so sorry that your husband has shown so much progression. How long had it been since his last scan entering the trial? 

      Sending hugs and good vibes that he will respond to IL2.

      Linda

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      lhaley
      Participant

      Jen,

      I am so sorry that your husband has shown so much progression. How long had it been since his last scan entering the trial? 

      Sending hugs and good vibes that he will respond to IL2.

      Linda

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      Tim–MRF
      Guest

      Your message really resonates, in light of the NY Times article this past Sunday.

      I know people who did very well with IL 2.  Also know some who left the PLX BRAF trial because of these issues and switched to the GSK BRAF drug.  That one is not as far along, but is showing promising results as well.

      Please keep us posted.

       

      Tim–MRF

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      Tim–MRF
      Guest

      Your message really resonates, in light of the NY Times article this past Sunday.

      I know people who did very well with IL 2.  Also know some who left the PLX BRAF trial because of these issues and switched to the GSK BRAF drug.  That one is not as far along, but is showing promising results as well.

      Please keep us posted.

       

      Tim–MRF

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      Sherron
      Participant

      Jen,

      Thinking of you and  hoping things are going okay for you and your husband.

      Take Care,

      Sherron, wife to Jim

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      Sherron
      Participant

      Jen,

      Thinking of you and  hoping things are going okay for you and your husband.

      Take Care,

      Sherron, wife to Jim

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      jag
      Participant

      Hopefully the FDA is fired and a new system is put in place.

      Very sorry to hear of this.  I wish you guys the best of luck with IL2.

      John

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      jag
      Participant

      Hopefully the FDA is fired and a new system is put in place.

      Very sorry to hear of this.  I wish you guys the best of luck with IL2.

      John

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      JenC
      Participant

      Thanks for all of the support!  I did read the Sunday NY Times article and found it asking the question that I have been asking these last couple of months.  I am not complaining, though, since we knew the chances before entering into the trial, and we chose this trial even though there were other options out there, such as starting IL2 2 months ago rather than now.  Plus, having failed DTIC makes him eligible for an Ipi trial.  I was tempted to ask my husband to leave the trial after being randomized to the "control", and this made me wonder about the scientific validity of such a trial – what is preventing those randomized to the non-study drug side to just quit, and what does that say about the statistics involved in the whole process?  We quit at this point since it was obvious DTIC was not working, and a CT scan showed it "failed'.  At what point are people included in the comparison study – one cycle? two cycles? until death?  What are the overall endpoints of this phase III trial? 

      I am very glad to see the NY Times article and the posts on this message board questioning the ethics of these trials!  It is obvous that the game has changed – why compare apples to oranges?  A crossover study makes sense – why be restricted from taking the study drug until FDA approval when the chances of surviving that long are so low?

      Another thing we've been wondering is after his initial diagnosis 1 year ago, he had a local recurrence in the lymph nodes after 2 1/2 months, then he went from Dec to July with no evidence of disease (however the two spots that had negative biopsies in April are now his largest tumors), but since his July diagnosis of unresectable tumors, he's had dozens of tumors pop up daily.  Is his body not able to fight it anymore or does the spread of melanoma seem to be exponential once it leaves the lymphatic system?

      JenC

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        lhaley
        Participant

        Jen,

        I am not a Dr. so this is just my opinion. My mets just went to my lymph system for the first time. For 4 years it had been spreading through the blood system. Just because it leaves the lymph system it does not mean that it necessarily grows exponentially when that happens. I would think that his body is not fighting it anymore.  That's a good question to ask your Dr. 

        Linda

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        lhaley
        Participant

        Jen,

        I am not a Dr. so this is just my opinion. My mets just went to my lymph system for the first time. For 4 years it had been spreading through the blood system. Just because it leaves the lymph system it does not mean that it necessarily grows exponentially when that happens. I would think that his body is not fighting it anymore.  That's a good question to ask your Dr. 

        Linda

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      JenC
      Participant

      Thanks for all of the support!  I did read the Sunday NY Times article and found it asking the question that I have been asking these last couple of months.  I am not complaining, though, since we knew the chances before entering into the trial, and we chose this trial even though there were other options out there, such as starting IL2 2 months ago rather than now.  Plus, having failed DTIC makes him eligible for an Ipi trial.  I was tempted to ask my husband to leave the trial after being randomized to the "control", and this made me wonder about the scientific validity of such a trial – what is preventing those randomized to the non-study drug side to just quit, and what does that say about the statistics involved in the whole process?  We quit at this point since it was obvious DTIC was not working, and a CT scan showed it "failed'.  At what point are people included in the comparison study – one cycle? two cycles? until death?  What are the overall endpoints of this phase III trial? 

      I am very glad to see the NY Times article and the posts on this message board questioning the ethics of these trials!  It is obvous that the game has changed – why compare apples to oranges?  A crossover study makes sense – why be restricted from taking the study drug until FDA approval when the chances of surviving that long are so low?

      Another thing we've been wondering is after his initial diagnosis 1 year ago, he had a local recurrence in the lymph nodes after 2 1/2 months, then he went from Dec to July with no evidence of disease (however the two spots that had negative biopsies in April are now his largest tumors), but since his July diagnosis of unresectable tumors, he's had dozens of tumors pop up daily.  Is his body not able to fight it anymore or does the spread of melanoma seem to be exponential once it leaves the lymphatic system?

      JenC

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