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Just tested positive for BRAF

Forums General Melanoma Community Just tested positive for BRAF

  • Post
    dawn dion
    Participant

    Wow talking about this stuff seems so Weird!!!   Like I should be talking about someone else.  In Jan 2010 I went to my Dr.

    Wow talking about this stuff seems so Weird!!!   Like I should be talking about someone else.  In Jan 2010 I went to my Dr. and asked to have this spot removed from my  left arm.  It had been there forever and for whatever reason it was starting to make me nervous.   She told me to wait six months.  Well 4 1/2 months into the six  it ulcerated.  I knew this couldn't be good.    Had it removed told stage 3 melenoma had a trace amount in the sentinel node and had the remaining lymph nodes under my left arm removed.   Told 30% chance it would ever return and went on ipiluminad (sp)   The whole time I was doing the drug I was told this is what you want to be doing – great  results with this drug.  Three months after I started the trial guess what I am now Stage IV.      I have two beautiful girls and I am scared out of my mind. 

     My Dr. called me the other night and said great news you tested positive for the gene change so now we can move on to the next trial.   Does anyone out there have anything good to say about this.  Because right now I am feeling like a guinea pig.   I read melenoma girls story and I swear it was like reading my own, with the exception of being told that interferon would do me no good and to go with the trial – I feel like I have been failed so many times by my Drs that I don't know what to do or think next. 

    I know there are sooooo many of you out there in the same boat – but I feel really alone and scared beyond anything I have ever felt before – Every time I look at my girls all I can do is cry because I feel like I am failing my family.   I was recently told to get off my a** and stop feeling sorry for myself.  In time i know I will but for right now I am feeling very sad in Florida.

     

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      carol b
      Participant

      It is your right to feel sad. It is a great thing you tested positive for B-Raf, I hear the treatment can do great things and have been told by my doctor it is my best chance for survival. Although i tested negative i will never know. iI start Interleukin2 this Wed. the 16th. Its the best they can do for me. You got really lucky in my opinion, My Dr. said its the best treatment out there if your B-RAF positive. so im sending you prayers straight up to heaven right now that this works for you and you live a long happy life with your family.

      carol bellinger

      stage IV

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      carol b
      Participant

      It is your right to feel sad. It is a great thing you tested positive for B-Raf, I hear the treatment can do great things and have been told by my doctor it is my best chance for survival. Although i tested negative i will never know. iI start Interleukin2 this Wed. the 16th. Its the best they can do for me. You got really lucky in my opinion, My Dr. said its the best treatment out there if your B-RAF positive. so im sending you prayers straight up to heaven right now that this works for you and you live a long happy life with your family.

      carol bellinger

      stage IV

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      KatyWI
      Participant

      Dawn,

      You are NOT failing your family!  You are fighting, you are educating yourself, and you are doing the very best you can, for you and for them.  It's totally OK to feel scared and it's totally OK to cry!  Whoever told you to get off your ass is an idiot.  They don't walk in your shoes and they have no idea what it's like to be you.  (That being said, if you're having trouble coping with your dx enough that you can't function day-to-day, please get some help…but do not let someone else tell you how you're supposed to feel!)

      With that off my chest, on to the topic of feeling like a guinea pig…unfortunately, that's the reality of stage IV melanoma.  There are lots of trials right now, and that's a good thing for us.  Before starting trials, you usually  need to fail one of the very few approved treatments.  I would urge you to consider IL-2.  It's a rough treatment, but for a few people it can bring lasting NED status, and that's what we all dream about.

      I have to go now – I'm cooking my family dinner and multitasting! – but please know you are not alone and we all care, 'cause we really all are in the same boat.

      Warmly,

      KatyWI

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      KatyWI
      Participant

      Dawn,

      You are NOT failing your family!  You are fighting, you are educating yourself, and you are doing the very best you can, for you and for them.  It's totally OK to feel scared and it's totally OK to cry!  Whoever told you to get off your ass is an idiot.  They don't walk in your shoes and they have no idea what it's like to be you.  (That being said, if you're having trouble coping with your dx enough that you can't function day-to-day, please get some help…but do not let someone else tell you how you're supposed to feel!)

      With that off my chest, on to the topic of feeling like a guinea pig…unfortunately, that's the reality of stage IV melanoma.  There are lots of trials right now, and that's a good thing for us.  Before starting trials, you usually  need to fail one of the very few approved treatments.  I would urge you to consider IL-2.  It's a rough treatment, but for a few people it can bring lasting NED status, and that's what we all dream about.

      I have to go now – I'm cooking my family dinner and multitasting! – but please know you are not alone and we all care, 'cause we really all are in the same boat.

      Warmly,

      KatyWI

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        carol b
        Participant

        amen to that sisteryes

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        carol b
        Participant

        amen to that sisteryes

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      killmel
      Participant

      Dawn

       

      So sad to hear your story.

      I try to read everything about IPI & braf & Mek clinical trials. I am stage 3.

      The bottomline, with Braf & Mek inhibitor, is that these drug do NOT give you a long term response. If you "google" Braf & Mek clinical trial results thus far, the average response time frame is 8-12 months then the drug stops working. For some peolpe the drug works longer yet for others the drug does not even work but a few months if that.

      The downside of this drug is that it does have some bad side effects like acne, fatigue, etc.

      My friend was on Braf for 12 months & progressed. She had severe acne & joint pain for the total 12 months. It was a tuff road for her.

      The other issue is there is no end point to this drug, you just keep taking it for the duration until you  progress.

      I think that this drug can buy you time but it is not a long tern cure based on reports from clinical trials.

      I hope this helps.

      Good Luck

      Jim

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      killmel
      Participant

      Dawn

       

      So sad to hear your story.

      I try to read everything about IPI & braf & Mek clinical trials. I am stage 3.

      The bottomline, with Braf & Mek inhibitor, is that these drug do NOT give you a long term response. If you "google" Braf & Mek clinical trial results thus far, the average response time frame is 8-12 months then the drug stops working. For some peolpe the drug works longer yet for others the drug does not even work but a few months if that.

      The downside of this drug is that it does have some bad side effects like acne, fatigue, etc.

      My friend was on Braf for 12 months & progressed. She had severe acne & joint pain for the total 12 months. It was a tuff road for her.

      The other issue is there is no end point to this drug, you just keep taking it for the duration until you  progress.

      I think that this drug can buy you time but it is not a long tern cure based on reports from clinical trials.

      I hope this helps.

      Good Luck

      Jim

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      lhaley
      Participant

      Dawn,

      I'm sorry that you have moved onto Stage IV.  You said you were on ippi for stage 3. Is that in a trial? If so you might have been on the placebo arm.

      I read your profile and it said you had a lymph node in your lung. Have you talked to your Dr. about the possibility of surgery?  I'm also B-raf positive but haven't used the drug yet.  They now have B-raf and MEK combinations that are hoped to have a longer response. 

      I have my scans in a few days, they are watching a spot in my lung.  I am going to ask for surgery first, then if that doesn't happen my thoughts are to go with IL2 next.  While the response rate isn't good, those who are responders have had long term response.  My thoughts are to go with one of the harder treatments first while I am feeling healthy. Who knows, maybe I will be a complete responder!   Of course I'm still hoping that I've stabalized and won't need to use my plan A, B or C. lol

      You have not failed! You might not have responded but that is way different than failing!  If only they had a test to know which one of us would respond to which treatment.  You need to surround yourself by loving caring positive thinking people right now. If the person who told you to stop feeling sorry for yourself is a significant other I suggest your onc. have a heart to heart talk with them. Unless you've ever been given a diagnosis like this there is no way they understand emotionally what you are going through.

      Your not alone,

      Linda

      Stage IV since 06

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      lhaley
      Participant

      Dawn,

      I'm sorry that you have moved onto Stage IV.  You said you were on ippi for stage 3. Is that in a trial? If so you might have been on the placebo arm.

      I read your profile and it said you had a lymph node in your lung. Have you talked to your Dr. about the possibility of surgery?  I'm also B-raf positive but haven't used the drug yet.  They now have B-raf and MEK combinations that are hoped to have a longer response. 

      I have my scans in a few days, they are watching a spot in my lung.  I am going to ask for surgery first, then if that doesn't happen my thoughts are to go with IL2 next.  While the response rate isn't good, those who are responders have had long term response.  My thoughts are to go with one of the harder treatments first while I am feeling healthy. Who knows, maybe I will be a complete responder!   Of course I'm still hoping that I've stabalized and won't need to use my plan A, B or C. lol

      You have not failed! You might not have responded but that is way different than failing!  If only they had a test to know which one of us would respond to which treatment.  You need to surround yourself by loving caring positive thinking people right now. If the person who told you to stop feeling sorry for yourself is a significant other I suggest your onc. have a heart to heart talk with them. Unless you've ever been given a diagnosis like this there is no way they understand emotionally what you are going through.

      Your not alone,

      Linda

      Stage IV since 06

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