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Wonderful News to share on BRAF.

Forums Cutaneous Melanoma Community Wonderful News to share on BRAF.

  • Post

    Hi my fellow MPIPers!

    Hi my fellow MPIPers!

    I have been on PLX4032 (BRAF) for 7 weeks, and so far fabulous news!!  Im rapt and couldnt have asked for better results :-)  My brain tumour has disappeared… YAY!  And all of my tumours (liver, lungs, skin, everywhere basically) have all shrunk by an average of 70 – 80%  Although I am feeling great emotionally and mentally, I am suffering from the side effects pretty badly.   My entire body has been covered in this rash since week 2, but it is especially bad now on my face.  It looks terrible and the itchiness is unbearable!  Does anybody have any advice? or has anyone experienced this?  I also have aches and pains in all my joints, and terrible pains in my calfs and feet (my feet are blistered and painful to even walk on?)  Im not sure what to do, should I be resting to get better, and keeping my feet up,etc, so that I dont push it all too quickly and end up worse?  Or should I be attempting to do some little exercises and perhaps rehab stuff at the swimming pool? 

    Also, Ive just spent the past week in hospital for a bit of a 'spruce up'!  I had a blood transfusion, which my doc sent me in for, by while in there they did a  blood test and discovered that

    1. my calcium was too high (only by a little bit).  they gave me something thru IV, then lots of water thru there.  What does all this mean? Someone told me that CAlcium % CAncer go together.. Can someone please explain…. 

    2. my potassium was low, so they gave me some of that thru IV too.  Anything I should know here?

    ALSO…… PLEASE I hope somebody can help me with this BIG BIG problem of mine……. I CANT STOP WETTING MYSELF WHEN IM SLEEPING.  I WEAR 3 NAPPIES TO BED, HAVE SPECIAL WATERPROOF THINGS DOWN ON THE BED, BUT EVERY MORNING I END UP SATURATED AND HAVE TO CHANGE EVERYTHING……This problem is driving me mental.  My partner sleeps separately now, and nothing helps it, like not drinking at night, etc.  Im on methodone and gabapentin, I think these tabs just 'knock' me out so much, that when Im sleeping, Im just too relaxed to wake up?? But the doctors dont think this could be the reason.  Ive been tested and nothing is seriously wrong??? so im just lost and goin mental!!!  PLEASE CAN ANYONE HELP ME ON THIS ONE???    

    God bless you all and hope that many of you have also been experiencinng good news and results, with all these new drugs emerging. 

    love always, u are all always in my thoughts,

    Simmy from Melbourne, Australia. 

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  • Replies
      SusanE
      Participant

      Hi Simmy. I am so happy to hear your news about the positive results! I sure hope the symptoms settle down for you so you can enjoy it more! I wish I could help. Hang in there and keep up the good work!

      Many blessings,

      Susan wife of Jerry Stage III

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        Vermont_Donna
        Participant

        Hi Simmy,

        I responded to this thread a day or two ago…but in case my reply got lost, here it is again:

         

        Hi Simmy,

        Glad you are responding to the treatment, but so sorry you are suffering with a bad rash, and other side effects. Glad your doctor put you in the hospital to do a workup and give you some IV treatments for the side effects.

        I dont have many answers about the wetting when you are asleep but I was on the methadone and the gabapentin last winter (this winter too, but at a lower dose on the methadone)….BUT while I was on a higher dose of methadone and I also take 900mg of gabapentin three times a day, I fell asleep anywhere, anytime and was very deeply asleep. I couldnt drive and operate any kind of machinary (not that I would, lol). I was basically really really out of it pretty much most of the time……not really "high" but so spaced out. I can see why when you are sleeping you are so out cold and your muscles just relax and you urinate.

        There is an antidepressant drug called "imipramine" that they use for depression, but also for bed wetting. Perhaps you can research this and ask your doctor about it. There are of course the pads with the "alarm" that goes off when wetness occurs, that would prompt you to get up to go pee.

        Hope this helps, and thank you so much for letting us know how you are doing!

        Vermont_Donna, stage 3a

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        Vermont_Donna
        Participant

        Hi Simmy,

        I responded to this thread a day or two ago…but in case my reply got lost, here it is again:

         

        Hi Simmy,

        Glad you are responding to the treatment, but so sorry you are suffering with a bad rash, and other side effects. Glad your doctor put you in the hospital to do a workup and give you some IV treatments for the side effects.

        I dont have many answers about the wetting when you are asleep but I was on the methadone and the gabapentin last winter (this winter too, but at a lower dose on the methadone)….BUT while I was on a higher dose of methadone and I also take 900mg of gabapentin three times a day, I fell asleep anywhere, anytime and was very deeply asleep. I couldnt drive and operate any kind of machinary (not that I would, lol). I was basically really really out of it pretty much most of the time……not really "high" but so spaced out. I can see why when you are sleeping you are so out cold and your muscles just relax and you urinate.

        There is an antidepressant drug called "imipramine" that they use for depression, but also for bed wetting. Perhaps you can research this and ask your doctor about it. There are of course the pads with the "alarm" that goes off when wetness occurs, that would prompt you to get up to go pee.

        Hope this helps, and thank you so much for letting us know how you are doing!

        Vermont_Donna, stage 3a

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      SusanE
      Participant

      Hi Simmy. I am so happy to hear your news about the positive results! I sure hope the symptoms settle down for you so you can enjoy it more! I wish I could help. Hang in there and keep up the good work!

      Many blessings,

      Susan wife of Jerry Stage III

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      SO so happy to hear your great news!  That Brafi is something else!.  I too suffered from the joint and ligament pain.  When it was really bad I stuck to 24/7 regiment of novalgin.  The study docs wouldn't let me use ibuprofen.  Tylenol was also a help.  Benedryl was my drug of choice for the rash.  SOOO SOO happy to hear about the brain mets shrinking, going away.  When was that discovered and how big was it?  Did you start the trial with it already there?  I have just had to stop the BRAF because I have developed brain mets. Symptoms brought me to the brain MRI. Great news though, the Roche  study committee has just given me permission to resume the trial when the whole brain radiaiton is finished.  Yippee!  it was holding the chest tumors at bay so why not??? 

      Surrounding you with light and love,

      Shelly in Switzerland

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      SO so happy to hear your great news!  That Brafi is something else!.  I too suffered from the joint and ligament pain.  When it was really bad I stuck to 24/7 regiment of novalgin.  The study docs wouldn't let me use ibuprofen.  Tylenol was also a help.  Benedryl was my drug of choice for the rash.  SOOO SOO happy to hear about the brain mets shrinking, going away.  When was that discovered and how big was it?  Did you start the trial with it already there?  I have just had to stop the BRAF because I have developed brain mets. Symptoms brought me to the brain MRI. Great news though, the Roche  study committee has just given me permission to resume the trial when the whole brain radiaiton is finished.  Yippee!  it was holding the chest tumors at bay so why not??? 

      Surrounding you with light and love,

      Shelly in Switzerland

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      AS123
      Participant

      I am so HAPPY to hear your news about the tumors disappearing and shrinking! You will be in my thoughts and prayers that you continue to see wonderful results and that your side effects lessen. I am sorry that you are having to deal with that. I don't have any answers to your questions, but just wanted to let you know I'm thinking about you! Anne

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      AS123
      Participant

      I am so HAPPY to hear your news about the tumors disappearing and shrinking! You will be in my thoughts and prayers that you continue to see wonderful results and that your side effects lessen. I am sorry that you are having to deal with that. I don't have any answers to your questions, but just wanted to let you know I'm thinking about you! Anne

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      FormerCaregiver
      Participant

      That's excellent news! I think that new treatments like PLX4032 are starting
      to give patients some real hope that researchers are close to having drugs
      that really do work.

      I have read a great deal about melanoma over the last few years, but I
      haven't been on this forum for very long. From what I have seen, this is a
      great community in which people from around the world can really share ideas
      and info to give others some optimism and encouragement. (I am also from
      Melbourne).

      Frank

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        dawn dion
        Participant

        YEA for you keep up the good work!  I really feel like B-RAF will be a huge turn in the right direction for those of us with the gene change – Ready to kick this monster to the curb!

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        dawn dion
        Participant

        YEA for you keep up the good work!  I really feel like B-RAF will be a huge turn in the right direction for those of us with the gene change – Ready to kick this monster to the curb!

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      FormerCaregiver
      Participant

      That's excellent news! I think that new treatments like PLX4032 are starting
      to give patients some real hope that researchers are close to having drugs
      that really do work.

      I have read a great deal about melanoma over the last few years, but I
      haven't been on this forum for very long. From what I have seen, this is a
      great community in which people from around the world can really share ideas
      and info to give others some optimism and encouragement. (I am also from
      Melbourne).

      Frank

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