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RO5185426 (PLX4032) Anyone else out there on this pill with CRAZY BLISTERS & RASH?

Forums General Melanoma Community RO5185426 (PLX4032) Anyone else out there on this pill with CRAZY BLISTERS & RASH?

  • Post

    Hi there,

    Just wondering if there are any others out there who are travelling the same road as me right now?  Ive been taking the pill for only 4 weeks today, and although i havent been scanned (2 weeks time i think) I am seeing some dramatic results in the many skin nodules i had.!!  Yipee Hooray!! Just hope and pray that this pill is working its way through my insides as well!!  & also I pray that it is working for any of you out there as well xox

    Hi there,

    Just wondering if there are any others out there who are travelling the same road as me right now?  Ive been taking the pill for only 4 weeks today, and although i havent been scanned (2 weeks time i think) I am seeing some dramatic results in the many skin nodules i had.!!  Yipee Hooray!! Just hope and pray that this pill is working its way through my insides as well!!  & also I pray that it is working for any of you out there as well xox

    Some little questions about my feet?? the soles of them are covered in blisters.  Blisters that hurt and make it virtually impossible to walk on??

    Also, this rash? Its been there for few weeks now, and is mighty itchy!!  It has settled down a lot, compared to the first few days, but is still very irritating.  What cream are others using to treat it? especially on the face?

    Thank  you, take care, god bless & keep smiling :-)

    Simmy

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  • Replies
      dawn dion
      Participant

        Are you doing the BRAF/MEK combo?  I ask because I am supposed to be starting this soon.   Congrats on your results

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        dawn dion
        Participant

          Are you doing the BRAF/MEK combo?  I ask because I am supposed to be starting this soon.   Congrats on your results

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          M.G.A
          Participant

            Hi Simmy

            If you read my profile you will see that I am a complete fesponderto this drug. I probably had 2/3 weeks left to live when started treatment last Aug. I live in England and have just returned from a 4 week trip to your hometown Melbourne!! I too got a very severe rash one week after starting the treatment. I had to stop for 10 days and went back on reduced dose (3 tabs) the rash returned but not as badly and I remained and remain on that dose. The rash eventually settled about a week of itch then a few weeks of redness without itch. I did not experience any blisters anywhere but my first scan showed dramatic improvement and subsequent scans have shown no evidence of disease. I have been skiing and am leading a normal life. I have some joint sorenes and am very photo sensitive. I recently developed itchy hands which I see can also be a side effect but guess what I have my life back for now and am enjoying it.

            I wish you all the best with your treatment and hope the rash goes soon and that you will continue to improve.

            All the best

            Mary xxx 

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            M.G.A
            Participant

              Hi Simmy

              If you read my profile you will see that I am a complete fesponderto this drug. I probably had 2/3 weeks left to live when started treatment last Aug. I live in England and have just returned from a 4 week trip to your hometown Melbourne!! I too got a very severe rash one week after starting the treatment. I had to stop for 10 days and went back on reduced dose (3 tabs) the rash returned but not as badly and I remained and remain on that dose. The rash eventually settled about a week of itch then a few weeks of redness without itch. I did not experience any blisters anywhere but my first scan showed dramatic improvement and subsequent scans have shown no evidence of disease. I have been skiing and am leading a normal life. I have some joint sorenes and am very photo sensitive. I recently developed itchy hands which I see can also be a side effect but guess what I have my life back for now and am enjoying it.

              I wish you all the best with your treatment and hope the rash goes soon and that you will continue to improve.

              All the best

              Mary xxx 

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              HI Simmy,

               I am on week 37 of RO 518 5426.  When I first started I broke out in a rash all over my body,  It was pretty red and rashy but not itchy.  I was extremely senistive to the sun making the rash burn and my lips swell to Bart Simpson size.  My feet did swell and the pads of my feet hurt.  The only shoe I could walk in was Crocs.  Then the arthiritis started in.  It moved to all different parts of my body and got worse at night.  The trial people would not let me take Ibuprofen of any sort.  They gave me Novalgin instead.  Taking that drug 24/7 seemed to help.  Eventually I was only taking it at bedtime.  After about 4 months my hair started coming out, not totally, just thinning.  Then that subsided andnow I have extremely curly hair, WOW! 

              One suggestion, one thing that I could never figure out with this trial…. Why was the protocol written to not keep track of brain mets?  the docs always said they would do an MRI based on symptoms.  But isn't melanoma known to like the brain.  Ask you doctors if they would do one 3 months or so. 

              During those 37 weeks life was very normal!  I travelled to the States twice and to Venice and Florence Italy.  Yahoo!

              Take care.  Have you tried bendryl for the rash?

              Peace and light,

              Shelly in Switzerland

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                mahdusia
                Participant

                  Shelly

                  My father has a MM, stage IV with brain lesions. I just found the information about the clinical trial on RO5185426 and I'd absolutely appreciate the details how to get to/be approved etc. He is B-Raf positive.

                   

                  Looking forward to hearing from you

                  Magda

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                  mahdusia
                  Participant

                    Shelly

                    My father has a MM, stage IV with brain lesions. I just found the information about the clinical trial on RO5185426 and I'd absolutely appreciate the details how to get to/be approved etc. He is B-Raf positive.

                     

                    Looking forward to hearing from you

                    Magda

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                  HI Simmy,

                   I am on week 37 of RO 518 5426.  When I first started I broke out in a rash all over my body,  It was pretty red and rashy but not itchy.  I was extremely senistive to the sun making the rash burn and my lips swell to Bart Simpson size.  My feet did swell and the pads of my feet hurt.  The only shoe I could walk in was Crocs.  Then the arthiritis started in.  It moved to all different parts of my body and got worse at night.  The trial people would not let me take Ibuprofen of any sort.  They gave me Novalgin instead.  Taking that drug 24/7 seemed to help.  Eventually I was only taking it at bedtime.  After about 4 months my hair started coming out, not totally, just thinning.  Then that subsided andnow I have extremely curly hair, WOW! 

                  One suggestion, one thing that I could never figure out with this trial…. Why was the protocol written to not keep track of brain mets?  the docs always said they would do an MRI based on symptoms.  But isn't melanoma known to like the brain.  Ask you doctors if they would do one 3 months or so. 

                  During those 37 weeks life was very normal!  I travelled to the States twice and to Venice and Florence Italy.  Yahoo!

                  Take care.  Have you tried bendryl for the rash?

                  Peace and light,

                  Shelly in Switzerland

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                  NicOz
                  Participant
                    Hi Simmy,
                    I’m on a GSK BRAF trial & had terrible trouble with soles of feel. What I’ve discovered is that although they look like blisters, they’re actually new skin growth on the sole of foot so the derm gave me some ‘footsmart” & I find using that several times a day helps (a bit)!
                    It’s hard to imagine how painful & debilitating it is unless you’ve had it, isn’t it? I don’t have a rash anywhere else though- maybe chat with your trial coordinator/doc for some suggestions.
                    Good luck with your scans!!

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                    NicOz
                    Participant
                      Hi Simmy,
                      I’m on a GSK BRAF trial & had terrible trouble with soles of feel. What I’ve discovered is that although they look like blisters, they’re actually new skin growth on the sole of foot so the derm gave me some ‘footsmart” & I find using that several times a day helps (a bit)!
                      It’s hard to imagine how painful & debilitating it is unless you’ve had it, isn’t it? I don’t have a rash anywhere else though- maybe chat with your trial coordinator/doc for some suggestions.
                      Good luck with your scans!!

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