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

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

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

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 

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 

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

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

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!!

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!!