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Finally!! Here we go with B-RAF/MEK

Forums General Melanoma Community Finally!! Here we go with B-RAF/MEK

  • Post
    dawn dion
    Participant

    After a verrrry long 10 weeks of PET scans, biopsies, CT's, MRI's, ECHO's, EKG's and many blood draws I am finally starting my new trial.  After having ipi fail me and testing positive for a gene change (much to the excitement of my Dr.  – still not sure how excited I am) I now start  the B-RAF/MEK combo.   Here's hoping that it works because I am really tired of being poked and prodded.    I swear I don't know how some of you stay sane!

    After a verrrry long 10 weeks of PET scans, biopsies, CT's, MRI's, ECHO's, EKG's and many blood draws I am finally starting my new trial.  After having ipi fail me and testing positive for a gene change (much to the excitement of my Dr.  – still not sure how excited I am) I now start  the B-RAF/MEK combo.   Here's hoping that it works because I am really tired of being poked and prodded.    I swear I don't know how some of you stay sane! :)  I know why you do it – believe me I get it, but sometimes this process really pisses me off.  So I'm putting on my big girl undies and do what I have to do win this war!  

    Now enough of my whining – Any input from anyone who is on the B-RAF/MEK – I would love to hear from you.   Many of you out there have posted amazing stories on this forum and might I say THANK YOU!   It really makes it easier to live in this world  when you know you are not the only one out there fighting the fight and surviving all the odds.  It's a impressive bunch.

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  • Replies
      killmel
      Participant

      Dawn,

       

      I wish you all the luck in the world  that you are a responder.

      Please keep us posted with your experience with the braf/mek trial.

      I think everyone would like to her about your experience, particulary, side effects, & positive results etc.

      How many pills do you take & dosage??? What side effects did the doctor tell you others have had on this trial? When did the doc says you could see shrinkage??

      God Bless…..and keep your fighting spirit….you're great!!

       

      Amy-stage 3

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        KellieSue
        Participant

        Congrats on testing positive.

        I just started the B-RAF trial last Wednesday so I've only been one it for one week.

         I take 2mg of the B-RAf pill everyday. So far I've only had slight diarrhea some days, but not all. It seems to resolve itself by noon.

        I hope we are both responders!

        Kellie(from Iowa) Stage IV currently on B-RAF

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        dawn dion
        Participant

        Keillie – I am a baby at this compared to some if not all of you.   My journey only started in June 2010 and I did 3months of ipi before it came back.   So happy to know that after all you have been through you are still kicking it to the curb. 

        Right there with you – we WILL both be RESPONDERS

        Hugs and smiles :)

        Dawn (from Florida) Stage IV currently on B-RAF

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        dawn dion
        Participant

        Keillie – I am a baby at this compared to some if not all of you.   My journey only started in June 2010 and I did 3months of ipi before it came back.   So happy to know that after all you have been through you are still kicking it to the curb. 

        Right there with you – we WILL both be RESPONDERS

        Hugs and smiles :)

        Dawn (from Florida) Stage IV currently on B-RAF

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        KellieSue
        Participant

        Congrats on testing positive.

        I just started the B-RAF trial last Wednesday so I've only been one it for one week.

         I take 2mg of the B-RAf pill everyday. So far I've only had slight diarrhea some days, but not all. It seems to resolve itself by noon.

        I hope we are both responders!

        Kellie(from Iowa) Stage IV currently on B-RAF

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        dawn dion
        Participant

        Thanks so much!   As of 9PM tonight I will be taking 2 pills 150 mg each twice a day.    As far as side effects – There could be some nasty ones but they expect them to be minimal –  sunburn like rash, acne rash, fever, fatigue.  I'm hoping they are right.   Didn't really say when I would see shrinkage – since mine is in the lymph node of my lung I will have to wait until my next set of scans on April 28th.    However I have seen some others who have seen rapid shrinkage with in the first two weeks.   Mine is a rather small spot and thankfully only one so hopefully when I go for scans it will be GONE and good riddance.  I will post as my experience goes on, kind of interested to see myself.

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        dawn dion
        Participant

        sorry I mis-spoke on my dosage I do 1 pill at 1mg once a day and the other at 150mg twice a day.

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        dawn dion
        Participant

        sorry I mis-spoke on my dosage I do 1 pill at 1mg once a day and the other at 150mg twice a day.

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        dawn dion
        Participant

        Thanks so much!   As of 9PM tonight I will be taking 2 pills 150 mg each twice a day.    As far as side effects – There could be some nasty ones but they expect them to be minimal –  sunburn like rash, acne rash, fever, fatigue.  I'm hoping they are right.   Didn't really say when I would see shrinkage – since mine is in the lymph node of my lung I will have to wait until my next set of scans on April 28th.    However I have seen some others who have seen rapid shrinkage with in the first two weeks.   Mine is a rather small spot and thankfully only one so hopefully when I go for scans it will be GONE and good riddance.  I will post as my experience goes on, kind of interested to see myself.

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      killmel
      Participant

      Dawn,

       

      I wish you all the luck in the world  that you are a responder.

      Please keep us posted with your experience with the braf/mek trial.

      I think everyone would like to her about your experience, particulary, side effects, & positive results etc.

      How many pills do you take & dosage??? What side effects did the doctor tell you others have had on this trial? When did the doc says you could see shrinkage??

      God Bless…..and keep your fighting spirit….you're great!!

       

      Amy-stage 3

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      Lisa – Aust
      Participant

      Hi There!

      My boyfriend Craig recently started the GSK B-RAF/MEK trial. He started 3 weeks ago and everything has been good so far, the only sympts he has had is burning/sensitive hands and feet (feet particularly), joint pain and some warty looking skin lesions. They have definitely subsided though over the 3 weeks. Saw the onc on wed for 3 week check up and all was fine – if the sympts were too harsh then he would have lowered his dose, but no need. I think its also a toxicity issue. The only small thing that you may need to consider is the timing of the tablets – its a non issue really in the whole scheme of things but it requires a little adjustment – not being able to eat 2 hrs before and 1 hr after. But its pretty easy to manage – just need to be slightly more organised than we are!! 

      So yeah, let us know how you go and if you have any questions, Craig has a scan in 3 weeks so should know more then.

      Good luck

      Lisa – Aust

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        dawn dion
        Participant

        Lisa

        I will be thinking of you both during this wacky roller coaster ride – I hope that he responds well.  I am defiantly glad to hear that the symptoms have been mild.  So far after 3 days I am feeling pretty good.   Every time I take my pills I think to myself  be gone with you melanoma be gone.     You are right about the time thing.  Got up this morning a hour and a half after I was supposed to have taken my pills.  I guess we will find what works as time goes on but I know what you mean about being more organized about it – it's really hard on the weekends though.  Just never know what you will be doing when.

        Best of luck to you – please keep in touch – Again it's nice to know that there is someone else out there even if you never meet them face to face.   I'll will be thinking of you.

        Until next time

        Hugs and Smiles

        Dawn (Stage IV – Florida)

         

         

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        dawn dion
        Participant

        Lisa

        I will be thinking of you both during this wacky roller coaster ride – I hope that he responds well.  I am defiantly glad to hear that the symptoms have been mild.  So far after 3 days I am feeling pretty good.   Every time I take my pills I think to myself  be gone with you melanoma be gone.     You are right about the time thing.  Got up this morning a hour and a half after I was supposed to have taken my pills.  I guess we will find what works as time goes on but I know what you mean about being more organized about it – it's really hard on the weekends though.  Just never know what you will be doing when.

        Best of luck to you – please keep in touch – Again it's nice to know that there is someone else out there even if you never meet them face to face.   I'll will be thinking of you.

        Until next time

        Hugs and Smiles

        Dawn (Stage IV – Florida)

         

         

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      Lisa – Aust
      Participant

      Hi There!

      My boyfriend Craig recently started the GSK B-RAF/MEK trial. He started 3 weeks ago and everything has been good so far, the only sympts he has had is burning/sensitive hands and feet (feet particularly), joint pain and some warty looking skin lesions. They have definitely subsided though over the 3 weeks. Saw the onc on wed for 3 week check up and all was fine – if the sympts were too harsh then he would have lowered his dose, but no need. I think its also a toxicity issue. The only small thing that you may need to consider is the timing of the tablets – its a non issue really in the whole scheme of things but it requires a little adjustment – not being able to eat 2 hrs before and 1 hr after. But its pretty easy to manage – just need to be slightly more organised than we are!! 

      So yeah, let us know how you go and if you have any questions, Craig has a scan in 3 weeks so should know more then.

      Good luck

      Lisa – Aust

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      deffk1105
      Participant

      Hi Dawn –

      I had to reply when i saw your post.  I also started the BRAF/MEK combo trial at Moffit (Dr. Kudchadkar) – looks like the day before you (3/2/11). Good luck to you!!!

      Kate (Wisconsin)

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        dawn dion
        Participant

        GET OUTT!!!  Same Dr. and everything.  Not that I would wish this on anybody – but Thank god – somebody to ride the train with.   I would have started on the 2nd but I throw a fit about having to be there only on Thursdays – I have tons of committments with my kids the rest of the week.    We will definetly have to share the journey – maybe we will run into each other.     Best of Luck – let me know how you are doing.  Here's hoping this is the one that finishes this off.

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        dawn dion
        Participant

        GET OUTT!!!  Same Dr. and everything.  Not that I would wish this on anybody – but Thank god – somebody to ride the train with.   I would have started on the 2nd but I throw a fit about having to be there only on Thursdays – I have tons of committments with my kids the rest of the week.    We will definetly have to share the journey – maybe we will run into each other.     Best of Luck – let me know how you are doing.  Here's hoping this is the one that finishes this off.

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      deffk1105
      Participant

      Hi Dawn –

      I had to reply when i saw your post.  I also started the BRAF/MEK combo trial at Moffit (Dr. Kudchadkar) – looks like the day before you (3/2/11). Good luck to you!!!

      Kate (Wisconsin)

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      mrsmarilyn
      Participant

      Hey Dawn!  Add one more to the BRAF/MEK train!  My brother has been on Braf alone for 9 months – it eliminated 6 out of 7 tumors!  One left in his pelvic area-so at Sara Cannon, Nashville, he just started the Braf/MEK combo!  Lets keep in touch – you are in a good spot after I know alot of hassle.  He went through the same process before getting on Braf (GSK).  Anyone feel free to contact me direct – and I am hopeful on this treatment-as the Braf alone was really a miracle!

      6 down – 1 to go!

      Best of luck and we will look forward to a celebration!

      MrsMarilyn

      Sister of Gary (stage IV)

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        dawn dion
        Participant

        Oh Yea! – I hate that any of us are doing this, but I am feeling much less lonely now.   Thankfully, unless it has changed in the last week, I only have one rather small spot, so I am feeling very positive.     I posted earlier that I am not relying on this alone – making major changes to my diet and health over all – starting massage and yoga next week.   Because, I have read that this has a lot  to do with your immune system so I am going down as many avenues as I can.   It's a shame that I had to become a Stage IV melanoma to do that for myself – but better late than never I guess.   It certainly can't hurt me at this point.

        Please keep me updated on your brothers progress.   I am hopeful for all of us – and yes we will Celebrate!

        Until next time we chat

        Hugs and Smiles

        Dawn (stage IV, Florida)

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        dawn dion
        Participant

        Oh Yea! – I hate that any of us are doing this, but I am feeling much less lonely now.   Thankfully, unless it has changed in the last week, I only have one rather small spot, so I am feeling very positive.     I posted earlier that I am not relying on this alone – making major changes to my diet and health over all – starting massage and yoga next week.   Because, I have read that this has a lot  to do with your immune system so I am going down as many avenues as I can.   It's a shame that I had to become a Stage IV melanoma to do that for myself – but better late than never I guess.   It certainly can't hurt me at this point.

        Please keep me updated on your brothers progress.   I am hopeful for all of us – and yes we will Celebrate!

        Until next time we chat

        Hugs and Smiles

        Dawn (stage IV, Florida)

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      mrsmarilyn
      Participant

      Hey Dawn!  Add one more to the BRAF/MEK train!  My brother has been on Braf alone for 9 months – it eliminated 6 out of 7 tumors!  One left in his pelvic area-so at Sara Cannon, Nashville, he just started the Braf/MEK combo!  Lets keep in touch – you are in a good spot after I know alot of hassle.  He went through the same process before getting on Braf (GSK).  Anyone feel free to contact me direct – and I am hopeful on this treatment-as the Braf alone was really a miracle!

      6 down – 1 to go!

      Best of luck and we will look forward to a celebration!

      MrsMarilyn

      Sister of Gary (stage IV)

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      LynnLuc
      Participant

      Hoping you sll grest responses in this trial!!!-Lynn

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      LynnLuc
      Participant

      Hoping you sll grest responses in this trial!!!-Lynn

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      NJW
      Participant

      Such an encouragement reading your reports…..Thank you so much.

      My son has been diagnosed with Melanoma stage 4, and has just started treatments

      in California.  Tumors on his heart, lungs, lympnodes and groin.  He is completely

      incompacitated because ot bleeding tumors, plus pain. Treatment started 1-2 wk ago and

      already tumors (golf balls) on groin have shrunk.  Great news for him and us all…

      We want to get him back to Florida and the family when he can travel.  Is there a

      hospital/Drs in central Florida (N.Orlando) where they are having BRAF trials?

      You have been such a boost to this  frightened Mom. Thanks again-NJW

       

       

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      NJW
      Participant

      Such an encouragement reading your reports…..Thank you so much.

      My son has been diagnosed with Melanoma stage 4, and has just started treatments

      in California.  Tumors on his heart, lungs, lympnodes and groin.  He is completely

      incompacitated because ot bleeding tumors, plus pain. Treatment started 1-2 wk ago and

      already tumors (golf balls) on groin have shrunk.  Great news for him and us all…

      We want to get him back to Florida and the family when he can travel.  Is there a

      hospital/Drs in central Florida (N.Orlando) where they are having BRAF trials?

      You have been such a boost to this  frightened Mom. Thanks again-NJW

       

       

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      shellebrownies
      Participant

      Hoping like heck that my husband will be joining you all soon. I have heard great things about this trial. Best of luck to you all!

      Michelle, wife of Don, Stage IV

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      shellebrownies
      Participant

      Hoping like heck that my husband will be joining you all soon. I have heard great things about this trial. Best of luck to you all!

      Michelle, wife of Don, Stage IV

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