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UCLA for treatment?

Forums General Melanoma Community UCLA for treatment?

  • Post
    Wendi Lynn
    Participant

    Hi All!

    I have a coworker that is currently being treated for breast cancer at UCLA and she was kind enough to ask about melanoma specialists there for me.  The doctors she was referred to are Dr. Glaspy, Dr. Ribas and Dr. Chmielowski.  Has anyone worked with any of these doctors?  I'm currently Stage III NED (waiting on brain MRI results) and my current oncologist was checking into local trials for me before we decided anything.   Just wondering if anyone has experience with these doctors….

    Thanks in advance!

    Wendi

    Hi All!

    I have a coworker that is currently being treated for breast cancer at UCLA and she was kind enough to ask about melanoma specialists there for me.  The doctors she was referred to are Dr. Glaspy, Dr. Ribas and Dr. Chmielowski.  Has anyone worked with any of these doctors?  I'm currently Stage III NED (waiting on brain MRI results) and my current oncologist was checking into local trials for me before we decided anything.   Just wondering if anyone has experience with these doctors….

    Thanks in advance!

    Wendi

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  • Replies
      Fen
      Participant

       

      Hi Wendy –  I don't know anything about UCLA, but Suzan AB just posted about UCSF so you might try contacting her – yeah, I know they're not terribly close, but she might know someone who is going there.

      Sorry – it's the best i got

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      Fen
      Participant

       

      Hi Wendy –  I don't know anything about UCLA, but Suzan AB just posted about UCSF so you might try contacting her – yeah, I know they're not terribly close, but she might know someone who is going there.

      Sorry – it's the best i got

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      killmel
      Participant

      Hi,

       

      I do not have any direct experience with UCLA but I remember JanOC's husband goes to UCLA and I think that she was very unhappy how they treated her husband. I think she said they treated him like a lab rat!!!! Perhaps you can look at old  post by JanOC.

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      killmel
      Participant

      Hi,

       

      I do not have any direct experience with UCLA but I remember JanOC's husband goes to UCLA and I think that she was very unhappy how they treated her husband. I think she said they treated him like a lab rat!!!! Perhaps you can look at old  post by JanOC.

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        Jan in OC
        Participant

        My husband sees Dr. Chmielowski every month and has seen Dr Ribas as backup.  We have been in the Roche BRAF trial since Feb 2010.  The "lab rat" comment was just how we were feeling that day!   Dr Chmielowski will usually spend time listening and answering my "million" questions during visits (I come with my list, he loves my organization skills!).  He always answers my emails promptly between visits if we have any concerns. He spends the time to explain things we don't understand.  But you still need to do your research, have a plan, and be your own advocate.  Sometimes I get frustrated and overloaded as my husband's advocate and that comes out in my posts.  I apologize if I gave anyone the wrong impression of the UCLA doctors.  I am grateful that they are helping to keep him alive!

        Jan in OC 

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        Jan in OC
        Participant

        My husband sees Dr. Chmielowski every month and has seen Dr Ribas as backup.  We have been in the Roche BRAF trial since Feb 2010.  The "lab rat" comment was just how we were feeling that day!   Dr Chmielowski will usually spend time listening and answering my "million" questions during visits (I come with my list, he loves my organization skills!).  He always answers my emails promptly between visits if we have any concerns. He spends the time to explain things we don't understand.  But you still need to do your research, have a plan, and be your own advocate.  Sometimes I get frustrated and overloaded as my husband's advocate and that comes out in my posts.  I apologize if I gave anyone the wrong impression of the UCLA doctors.  I am grateful that they are helping to keep him alive!

        Jan in OC 

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      LBN
      Participant

      I have been a patient of Dr. Ribas since December 2009 and have seen Glaspy and Chmielowski during my hospital stays and visits. I am very happy Dr, Ribas. On my third trial with UCLA and getting great results with the GSK braf right now.

      Laurie

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        killmel
        Participant

        Thanks for your reply Laurie. Were you a responder of IPI.???What made you decide todo BRAFand what have been your results thus far???? Any side effect from IPI & BRAF??? I am looking a both these trials & appreciate any feedback. Thanks

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        LBN
        Participant

        I did not respond to the IPI. I kept hearing about high response rates to the B-raf and Dr. Ribas wanted me to get started since we saw no response to the IPI. IPI side effects was mostly nausea and fatigue for about 24 hours after the infusion.

        I am on week 10 of the B-raf and my mets are slowly shrinking away. My side effects to the B-raf have been slight foot and hand tenderness and a crop of small wart like things that they have removed. I did come down with a case of shingles..but that was not a direct side effect.

        Hope this helps and let me knwo if you have any more questions.

        Laurie

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        LBN
        Participant

        I did not respond to the IPI. I kept hearing about high response rates to the B-raf and Dr. Ribas wanted me to get started since we saw no response to the IPI. IPI side effects was mostly nausea and fatigue for about 24 hours after the infusion.

        I am on week 10 of the B-raf and my mets are slowly shrinking away. My side effects to the B-raf have been slight foot and hand tenderness and a crop of small wart like things that they have removed. I did come down with a case of shingles..but that was not a direct side effect.

        Hope this helps and let me knwo if you have any more questions.

        Laurie

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        killmel
        Participant

        Thanks for your reply Laurie. Were you a responder of IPI.???What made you decide todo BRAFand what have been your results thus far???? Any side effect from IPI & BRAF??? I am looking a both these trials & appreciate any feedback. Thanks

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      LBN
      Participant

      I have been a patient of Dr. Ribas since December 2009 and have seen Glaspy and Chmielowski during my hospital stays and visits. I am very happy Dr, Ribas. On my third trial with UCLA and getting great results with the GSK braf right now.

      Laurie

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      Kim K
      Participant

      You are in good hands at UCLA.  Dr. Ribas has extensive knowlege with Melanoma as well as Glaspy.  I saw Glaspy for a second opinion this past March.  He confirmed what my oncs here in Hawaii were saying.  There is no good course of treatment for stage IV mel., but since I had "creepy crawly" disease IL-2 might be my best bet.  It was, and now I am NED after 23 bags of the stuff.

      I hope to remain in the 6% club, if not, then at least let me continue to cherry pick my mel if and when it comes back.  He said I will probably be one of those long time survivors and not to worry.  I thought that was cavilier of him to say, but so far it is the path my mel is taking.  He is very up to date as to what is happening in the field of mel research but got the feeling that Dr. Ribas saw most of the mel patients.  I have no hesitation seeing both of them if I was in LA.  I even thought about going to UCLA for my IL-2 but after speaking with my docs here in Hawaii, was comfortable enough to stay here.

      Best of luck,

      Kim K

      PS – he took care of my grandmothers lymphoma and remembers our family well. 

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      Kim K
      Participant

      You are in good hands at UCLA.  Dr. Ribas has extensive knowlege with Melanoma as well as Glaspy.  I saw Glaspy for a second opinion this past March.  He confirmed what my oncs here in Hawaii were saying.  There is no good course of treatment for stage IV mel., but since I had "creepy crawly" disease IL-2 might be my best bet.  It was, and now I am NED after 23 bags of the stuff.

      I hope to remain in the 6% club, if not, then at least let me continue to cherry pick my mel if and when it comes back.  He said I will probably be one of those long time survivors and not to worry.  I thought that was cavilier of him to say, but so far it is the path my mel is taking.  He is very up to date as to what is happening in the field of mel research but got the feeling that Dr. Ribas saw most of the mel patients.  I have no hesitation seeing both of them if I was in LA.  I even thought about going to UCLA for my IL-2 but after speaking with my docs here in Hawaii, was comfortable enough to stay here.

      Best of luck,

      Kim K

      PS – he took care of my grandmothers lymphoma and remembers our family well. 

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      Wendi Lynn
      Participant

      I appreciate all the feedback!  As of now, I'm still waiting for a call from my local oncologist…..makes me consider changing more and more daily.   And, although I am 6 months into this now, I'm still learning.  For instance, I've read so much about BRAF, but I am not sure I understand what that is and how to know if I should be asking to be tested for that.  It sounds as though the UCLA docs specialize in the BRAF trials???  I am stage 3, hopefully NED for 6 weeks (assuming my call is good news) and trying to figure out what to do next.  This board has been an invaluable source of information!

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        killmel
        Participant

        I am not sure but I think that you have to have "active disease" 1 cm tumor to be measured while on trial so you know if the drug is working.

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        killmel
        Participant

        I am not sure but I think that you have to have "active disease" 1 cm tumor to be measured while on trial so you know if the drug is working.

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      Wendi Lynn
      Participant

      I appreciate all the feedback!  As of now, I'm still waiting for a call from my local oncologist…..makes me consider changing more and more daily.   And, although I am 6 months into this now, I'm still learning.  For instance, I've read so much about BRAF, but I am not sure I understand what that is and how to know if I should be asking to be tested for that.  It sounds as though the UCLA docs specialize in the BRAF trials???  I am stage 3, hopefully NED for 6 weeks (assuming my call is good news) and trying to figure out what to do next.  This board has been an invaluable source of information!

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      Napa K
      Participant

      Hi Wendy-

      Happy to exchange info with you directly.  I am a patient at both UCLA and UCSF/Cal Pacific.  Going on 8 years in this "profession".

       

      Be well

      Kari

      [email protected]

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      Napa K
      Participant

      Hi Wendy-

      Happy to exchange info with you directly.  I am a patient at both UCLA and UCSF/Cal Pacific.  Going on 8 years in this "profession".

       

      Be well

      Kari

      [email protected]

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