› Forums › General Melanoma Community › Roche B-raf R05185426 Trial Participants
- This topic has 18 replies, 9 voices, and was last updated 13 years, 5 months ago by
LynnLuc.
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- March 29, 2011 at 7:13 am
Hi there everyone,
Ive been taking RO5185426 for bout 9 weeks now, with amazing results in regards to shrinking all my tumours. Only problem is Ive got the most severe, acne- like, extremely sore facial rash 🙁 Its been like this for 5 weeks now and only seems to be getting worse. Its in my ears, on my head, up my nose, down my throat, its crazy stuff!! The rash is all over my body but not as sore or severe as my face. My whole body is so itchy tho, its driving me nuts!
Hi there everyone,
Ive been taking RO5185426 for bout 9 weeks now, with amazing results in regards to shrinking all my tumours. Only problem is Ive got the most severe, acne- like, extremely sore facial rash 🙁 Its been like this for 5 weeks now and only seems to be getting worse. Its in my ears, on my head, up my nose, down my throat, its crazy stuff!! The rash is all over my body but not as sore or severe as my face. My whole body is so itchy tho, its driving me nuts!
Has anyone else experienced this? & how have u treated it? My oncologist gave me some tabs to treat acne and infection, and some cortsone type cream. Hes given me a week, and if theres no improvement in my skin, he is going to drop my dosage of RO5185426, which Im a bit scared to do when Im getting such a good response. He does not seem too concerned about dropping my dose & thinks that 6 tabs a day instead of 8 will be sufficient for my body weight (55kg)
What do all you experts out there think & has anyone had this RASH problem…Will it ever GO AWAY??
oh, also while im here, has anyone experienced nerve damage in their legs and feet after having them blow up with fluid and then drained very quickly? its like i have constant cramps in my calfs and an aching kind of pins and needles in my feet. i cant walk properly and its extremely painful. this all happened before i started taking R05185426, so it cannot be a side effect.
Thanks all for your wonderful kind hearted replies,
keep smiling everyone 🙂 Simmy from Oz xo
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- April 2, 2011 at 1:11 pm
Your post is already buried on the fourth page and it has only been four days since you posted. As already stated in you newer post, I must say there are mny aspects about this new format I do not like either.
As you said, perhaps this rash is a good thing as it seems you are indeed responding. The reason I did not respond to your post is that I can't speak from experience, and I sometimes wonder if I should respond to some posts merely with information because of this. I can say that in some studies, the most common drug-related adverse events were rash, photosensitivity, hair loss and joint pain. These were predominantly mild or moderate in severity. Twenty-six percent of patients developed cutaneous squamous cell carcinoma, which was typically managed without treatment interruption.
Perhaps there also were no responses because there are not many people on the board that are on PLX-4032, or they do not know what advice to give you. I have also read that there is nothing wrong when lowering, or even skipping a dose or two until the rash becomes more managable. Your doctor will be able to assist you further as well.
It is nothing personal though. I think everyone here is sincere in trying to help when they can.
Michael
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- April 2, 2011 at 10:26 pm
Thanks Michael,
Yeh I know everyone on here is honest and caring and sooo willing to help when they can. I think Ive hit the nail on the head now! The time difference! I didnt really think of that, and I didnt really know how this new board worked exactly. Now I do… So alls good.
Thanking you again,
Simmy
Stage IV (Australia)
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- April 2, 2011 at 10:26 pm
Thanks Michael,
Yeh I know everyone on here is honest and caring and sooo willing to help when they can. I think Ive hit the nail on the head now! The time difference! I didnt really think of that, and I didnt really know how this new board worked exactly. Now I do… So alls good.
Thanking you again,
Simmy
Stage IV (Australia)
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- April 2, 2011 at 1:11 pm
Your post is already buried on the fourth page and it has only been four days since you posted. As already stated in you newer post, I must say there are mny aspects about this new format I do not like either.
As you said, perhaps this rash is a good thing as it seems you are indeed responding. The reason I did not respond to your post is that I can't speak from experience, and I sometimes wonder if I should respond to some posts merely with information because of this. I can say that in some studies, the most common drug-related adverse events were rash, photosensitivity, hair loss and joint pain. These were predominantly mild or moderate in severity. Twenty-six percent of patients developed cutaneous squamous cell carcinoma, which was typically managed without treatment interruption.
Perhaps there also were no responses because there are not many people on the board that are on PLX-4032, or they do not know what advice to give you. I have also read that there is nothing wrong when lowering, or even skipping a dose or two until the rash becomes more managable. Your doctor will be able to assist you further as well.
It is nothing personal though. I think everyone here is sincere in trying to help when they can.
Michael
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- April 2, 2011 at 11:33 pm
Hi Simmy, I have no first hand experience of either the drug nor the side effects. However, sometimes knowing the correct term for something can really assist people in finding the information they need. Can I suggest that you 'google' the term "acneiform" and maybe combine it with BRAF and treatment in order to get some hits that may relate to your situation more specifically. At the very least it may help you formulate some question with your docs re: how to approach it.
Sorry I can't be of more help at the moment- currently running around with a few things going on, myself 🙂
Best of luck with finding some more info that directly relates to you!
Nic
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- April 2, 2011 at 11:33 pm
Hi Simmy, I have no first hand experience of either the drug nor the side effects. However, sometimes knowing the correct term for something can really assist people in finding the information they need. Can I suggest that you 'google' the term "acneiform" and maybe combine it with BRAF and treatment in order to get some hits that may relate to your situation more specifically. At the very least it may help you formulate some question with your docs re: how to approach it.
Sorry I can't be of more help at the moment- currently running around with a few things going on, myself 🙂
Best of luck with finding some more info that directly relates to you!
Nic
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- April 2, 2011 at 11:51 pm
Simmy – I was tempted to reply as anonymous because this is the stupidest reply ever. I don't know anything about the Braf trial, but have lots of experience with leg cramps. A friend suggested pickles – something in the dill seasoning – and it works wonderfully. I think it's a salt imbalance that the pickles help. I try to get a couple pickles in a day and it helps me tremendously. good luck with the rash!!
Fen
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- April 2, 2011 at 11:51 pm
Simmy – I was tempted to reply as anonymous because this is the stupidest reply ever. I don't know anything about the Braf trial, but have lots of experience with leg cramps. A friend suggested pickles – something in the dill seasoning – and it works wonderfully. I think it's a salt imbalance that the pickles help. I try to get a couple pickles in a day and it helps me tremendously. good luck with the rash!!
Fen
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- April 3, 2011 at 1:46 am
Another thought for the leg cramps. Could you be dehydrated? Try drinking some gateraide, the electrolytes wards off dehydration. I don't know anything about the trial either but I had issues with leg cramps from leukine and a friend suggested this and it worked.
Your Dr. might want to biopsy one of the areas that is itching so badly. You might have some type of infection.
Thinking of you,
Linda
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- April 3, 2011 at 1:46 am
Another thought for the leg cramps. Could you be dehydrated? Try drinking some gateraide, the electrolytes wards off dehydration. I don't know anything about the trial either but I had issues with leg cramps from leukine and a friend suggested this and it worked.
Your Dr. might want to biopsy one of the areas that is itching so badly. You might have some type of infection.
Thinking of you,
Linda
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- April 3, 2011 at 1:50 am
Simmy,
First time seeing your post! No snubbing going on here.
I can speak about the Roche BRAF because my husband was on it for most of 2010 (11 months). 4 pills in the morning, 4 at night. He suffered from extreme fatigue, hair loss, extreme sun sensitivity (used SPF 100 and blistered after 10 minutes outdoors). We joked that he lived like a vampire for a year!!! Did not even leave the house until 5pm and went to the grocery store at midnight.
His lymph nodes in his neck & throat swelled up several times,.He got a severe case of shingles around his waist and groin area. Suffered bad joint pain and lost mobility in his shoulder joints (almost like severe arthritis). Oh yeah, he also lost some vision in his one eye that has not returned 100%. Everything else returned to normal after stopping the drug (it took anywhere from one week to two months).
He was not a fast responder while he was on the drug, Small improvements every two month scan. The doctors call that "stable" ha ha ha!! The doctor removed him from the trial after one of his liver tumors grew by more than 30%.
He did not get much rash or acne, so i'm afraid I can't help with that. Hope this helps and that you have great response to the drug.
Jan, wife to Dirk, stage IV
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- April 3, 2011 at 1:50 am
Simmy,
First time seeing your post! No snubbing going on here.
I can speak about the Roche BRAF because my husband was on it for most of 2010 (11 months). 4 pills in the morning, 4 at night. He suffered from extreme fatigue, hair loss, extreme sun sensitivity (used SPF 100 and blistered after 10 minutes outdoors). We joked that he lived like a vampire for a year!!! Did not even leave the house until 5pm and went to the grocery store at midnight.
His lymph nodes in his neck & throat swelled up several times,.He got a severe case of shingles around his waist and groin area. Suffered bad joint pain and lost mobility in his shoulder joints (almost like severe arthritis). Oh yeah, he also lost some vision in his one eye that has not returned 100%. Everything else returned to normal after stopping the drug (it took anywhere from one week to two months).
He was not a fast responder while he was on the drug, Small improvements every two month scan. The doctors call that "stable" ha ha ha!! The doctor removed him from the trial after one of his liver tumors grew by more than 30%.
He did not get much rash or acne, so i'm afraid I can't help with that. Hope this helps and that you have great response to the drug.
Jan, wife to Dirk, stage IV
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- April 6, 2011 at 4:56 am
Hi simmy!
I had similar rash which was mostly on my body, looked almost all red from neck to toe not alot of redness hit my face though. But this only lasted about 2 weeks vanished than came back for another couple of weeks not as bad and has now vanished the dermatologist said it was lichenoid dermatitis. Luckily mine wasn't that itchy was offered an ointment but refused and it went away in a few weeks.
As for your feet issue had similar problem also they get very sore and painful to walk on especially first thing in the morning and after a long rest. This was also accompanied by arthritic pain in ankles, knees and odd places all over. Am 6 month into taking the drug and most those side effects have lessened. The first 3 months saw most of the crazy symptoms than they have settled down in the past 3 months.
Dont know if any of that helps but best of luck
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- April 24, 2011 at 2:05 am
Hi all, my husband has been on the GSK mek trial for five months and has had a complete response, no more tumours in his liver pancreas and lymph node, he had tried chemo and readiation but it came back with avengence. The side effect was a shocking rash on his face which dissapeared and is now confined to his back. strangely he too has been having cramp in his calves. You wouln't think hes sick tho as as well as working full time hes working round the house at weekeds. Also he has some dry cracked skin on his nails, some moo goo has resolved that. His next scan is end of may.
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- April 24, 2011 at 2:05 am
Hi all, my husband has been on the GSK mek trial for five months and has had a complete response, no more tumours in his liver pancreas and lymph node, he had tried chemo and readiation but it came back with avengence. The side effect was a shocking rash on his face which dissapeared and is now confined to his back. strangely he too has been having cramp in his calves. You wouln't think hes sick tho as as well as working full time hes working round the house at weekeds. Also he has some dry cracked skin on his nails, some moo goo has resolved that. His next scan is end of may.
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- April 6, 2011 at 4:56 am
Hi simmy!
I had similar rash which was mostly on my body, looked almost all red from neck to toe not alot of redness hit my face though. But this only lasted about 2 weeks vanished than came back for another couple of weeks not as bad and has now vanished the dermatologist said it was lichenoid dermatitis. Luckily mine wasn't that itchy was offered an ointment but refused and it went away in a few weeks.
As for your feet issue had similar problem also they get very sore and painful to walk on especially first thing in the morning and after a long rest. This was also accompanied by arthritic pain in ankles, knees and odd places all over. Am 6 month into taking the drug and most those side effects have lessened. The first 3 months saw most of the crazy symptoms than they have settled down in the past 3 months.
Dont know if any of that helps but best of luck
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