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Need thinking caps

Forums General Melanoma Community Need thinking caps

  • Post
    sharmon
    Participant

    Hi, we are sitting in Houston waiting on a trial to start on Tuesday,  MEK and Alimpta,  Brent has been on MEK alone for over 15 months and the last scan showed some growth.  He is Braf negative!  When is it discussed everyone they just scratche there head.  No one understands why or how.

    Hi, we are sitting in Houston waiting on a trial to start on Tuesday,  MEK and Alimpta,  Brent has been on MEK alone for over 15 months and the last scan showed some growth.  He is Braf negative!  When is it discussed everyone they just scratche there head.  No one understands why or how.

    Back In May of 2009 he went stage IV and started IPI with carbo/taxol and went 9 months stable before he showed progression.  In Jan of 2010 he did one round of Bio chemo and spent a week in ICUl.  Scans did not show any improvement and it was stopped due to side effects.  The next month( February 2010) we found MEk for solid tumors (no Braf necessary). He did MEK for 14 months, stable until March 2011.

    He has a chance to do a ABT-888 parp inhibitor in OHIO in May.  His tissue says he is qualified for this trial.  If we do this trial on this Tuesday he might miss his chance in OHIO.

    We have been in contact with NIH and he is HlA-2 negative and is a possible qualifier for the TIL trial in Bethesda MA.

    Here is a thought for JIM B  as well as the others here is consider.  Was all this stability due to IPI followed by Bio. and shoud we reintroduce IPI?  This theroy would support late response and a needed reintroduction.  He is Braf negative and there is no real reason he should be responding to Mek.  We talked to Dr Weber about IPI (yervoy) introduction and he said NO with out any explanation.

    So do MEk wcith chemo on Tuesday……. wait and do ABT-888 with chemo in OHIO in May ,   or push for reintroduction of IPI……or a Til trial ( not good, since he could not take the Bio Chemo on Jan of 2010)

    So you see our concern.  Brent is in great shape for a 63 year old with lung mets.  Able to work and travel.  If you didn't know about the melanoma, the rash on his face from Mek looks like a teenager.

    Any feedback from the people here would be helpful.

    Brent and Sharon

     

     

     

     

     

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  • Replies
      Carol Taylor
      Participant

      While there's a great deal of technical issues I can't answer, I can suggest that you ask Dr. Weber to explain his "NO!"  You're entitled to understand why he says that.

      My question is, you are well-versed in your options it seems and have been through a lot already. You know your body and at 63, you know your heart & gut. What is your gut telling you? What option are you leaning toward? You're the one who will have to live with any outcomes of any option you choose…what can you best live & cope with? That of course is mainly for Brent. I'm sure both of you just want to choose the option that will lead to a better, longer life.

      Lord, in Your vast wisdom and understanding, grant that wisdom to Brent and Sharon as they seek to make decisions. They need more answers than they're getting, even though they already know much. Open hearts to them and doors for them. Lead them in the best way to go. May they continue to have unity of heart, mind, and purpose. Bless them both and grant them Your peace and Hope. Lord, in Your mercy. Amen.

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      Carol Taylor
      Participant

      While there's a great deal of technical issues I can't answer, I can suggest that you ask Dr. Weber to explain his "NO!"  You're entitled to understand why he says that.

      My question is, you are well-versed in your options it seems and have been through a lot already. You know your body and at 63, you know your heart & gut. What is your gut telling you? What option are you leaning toward? You're the one who will have to live with any outcomes of any option you choose…what can you best live & cope with? That of course is mainly for Brent. I'm sure both of you just want to choose the option that will lead to a better, longer life.

      Lord, in Your vast wisdom and understanding, grant that wisdom to Brent and Sharon as they seek to make decisions. They need more answers than they're getting, even though they already know much. Open hearts to them and doors for them. Lead them in the best way to go. May they continue to have unity of heart, mind, and purpose. Bless them both and grant them Your peace and Hope. Lord, in Your mercy. Amen.

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      James from Sydney
      Participant

      Our son was on Carbo and Taxol and had stable/reductions for 7 months. It may be that it was the chemo working and not the Ippi. You should check out the data from that trial to see if there was a Control group to determine whether Ippi made a difference. Also ask if others had success with MEK and were BRAF negative.

      Brent seems like he has an alert Immune system i am sure that whatever you choose his own body will be in there standing alongside it and fighting.

      best wishes

      James

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      James from Sydney
      Participant

      Our son was on Carbo and Taxol and had stable/reductions for 7 months. It may be that it was the chemo working and not the Ippi. You should check out the data from that trial to see if there was a Control group to determine whether Ippi made a difference. Also ask if others had success with MEK and were BRAF negative.

      Brent seems like he has an alert Immune system i am sure that whatever you choose his own body will be in there standing alongside it and fighting.

      best wishes

      James

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      FormerCaregiver
      Participant

      I don't know how much this will help, but I would like to share some info and thoughts
      with you.

      Unfortunately, the current situation is that melanoma is likely to outsmart nearly every
      treatment that we have at the moment. A few years ago, a wise oncologist told us that
      doctors know very little about melanoma, and I feel that is still true today.

      Many experimental drugs look promising, but they will need to be tested for a long time so
      that doctors and scientists will be sure of what they can or cannot do for the patient.

      You asked if "… all this stability due to IPI followed by Bio. and shoud we reintroduce
      IPI?" I don't think that anyone can give you a 100% definite answer to that question
      because there are too many things that remain uncertain.

      Another good point that you mention is that he "… is Braf negative and there is no real
      reason he should be responding to Mek". That logic would certainly apply if we were sure
      of how melanoma would react in all circumstances, but this cancer is far more devious than
      many people can possibly imagine.

      I haven't been able to find much about ABT-888, but I found here is some info about PARP
      inhibitors in general:
      http://curetoday.com/index.cfm/fuseaction/blog.showIndex/debutripathy/2011/4/8/A-few-more-answers-and-questions-about-the-PARP-inhibitor-trials

      The article states: "The truth will eventually emerge, and while it is possible that we
      might be disappointed, the data so far suggests that PARP inhibitors will be effective
      drugs – it remains to be seen which inhibitor (since they all seem to be different) and
      which patients will benefit (since we don't know which tumors really rely on this
      enzyme)".

      So what is one to do? I don't know, but any new treatment is probably worth trying because
      it might just work as scientists think that it could.

      Hope this helps.

      Frank from Australia

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      FormerCaregiver
      Participant

      I don't know how much this will help, but I would like to share some info and thoughts
      with you.

      Unfortunately, the current situation is that melanoma is likely to outsmart nearly every
      treatment that we have at the moment. A few years ago, a wise oncologist told us that
      doctors know very little about melanoma, and I feel that is still true today.

      Many experimental drugs look promising, but they will need to be tested for a long time so
      that doctors and scientists will be sure of what they can or cannot do for the patient.

      You asked if "… all this stability due to IPI followed by Bio. and shoud we reintroduce
      IPI?" I don't think that anyone can give you a 100% definite answer to that question
      because there are too many things that remain uncertain.

      Another good point that you mention is that he "… is Braf negative and there is no real
      reason he should be responding to Mek". That logic would certainly apply if we were sure
      of how melanoma would react in all circumstances, but this cancer is far more devious than
      many people can possibly imagine.

      I haven't been able to find much about ABT-888, but I found here is some info about PARP
      inhibitors in general:
      http://curetoday.com/index.cfm/fuseaction/blog.showIndex/debutripathy/2011/4/8/A-few-more-answers-and-questions-about-the-PARP-inhibitor-trials

      The article states: "The truth will eventually emerge, and while it is possible that we
      might be disappointed, the data so far suggests that PARP inhibitors will be effective
      drugs – it remains to be seen which inhibitor (since they all seem to be different) and
      which patients will benefit (since we don't know which tumors really rely on this
      enzyme)".

      So what is one to do? I don't know, but any new treatment is probably worth trying because
      it might just work as scientists think that it could.

      Hope this helps.

      Frank from Australia

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