› Forums › General Melanoma Community › BRAF Side Effects
- This topic has 9 replies, 3 voices, and was last updated 11 years, 4 months ago by
aldakota22.
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- January 17, 2014 at 3:41 am
From your profile it appears you are stage III, is that correct? If so, why are you asking about the BRAF inhibitors, is your doctor planning on putting you on them (just curious)?
There are 2 BRAF inhibitors out there and I only have personal experience with one of them: Dabrafenib (aka Tafinlar). I have been taking this medication along with the MEK inhibitor (Trametinib, aka Mekenist) for just over one month. I began both medications at the same time, so if you'll only be taking the BRAF inhibitor this may not be of much use to you. You do not have to be tested to take the MEK inhibitor along with the BRAF inhibitors and the studies have shown that the side effects of taking both drugs together are fewer and less severe than the side effects of either drug by itself, while actually increasing the effectiveness of the drugs and increasing the length of response. All good things.
I have honestly had no noticable side effects- no skin issues, no GI issues, no eye issues, no nothing as far as I can tell. I know others have reported some fevers (the one side effect that is more likely with the combo), and a few people have reported itchy skin or rash, but most of the people report very few and generally very mild side effects from these drugs. If you begin taking them they will monitor your bloodwork pretty closely to make sure your liver is tolerating them well, though.
Hope some of this helps
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- January 17, 2014 at 3:41 am
From your profile it appears you are stage III, is that correct? If so, why are you asking about the BRAF inhibitors, is your doctor planning on putting you on them (just curious)?
There are 2 BRAF inhibitors out there and I only have personal experience with one of them: Dabrafenib (aka Tafinlar). I have been taking this medication along with the MEK inhibitor (Trametinib, aka Mekenist) for just over one month. I began both medications at the same time, so if you'll only be taking the BRAF inhibitor this may not be of much use to you. You do not have to be tested to take the MEK inhibitor along with the BRAF inhibitors and the studies have shown that the side effects of taking both drugs together are fewer and less severe than the side effects of either drug by itself, while actually increasing the effectiveness of the drugs and increasing the length of response. All good things.
I have honestly had no noticable side effects- no skin issues, no GI issues, no eye issues, no nothing as far as I can tell. I know others have reported some fevers (the one side effect that is more likely with the combo), and a few people have reported itchy skin or rash, but most of the people report very few and generally very mild side effects from these drugs. If you begin taking them they will monitor your bloodwork pretty closely to make sure your liver is tolerating them well, though.
Hope some of this helps
-
- January 17, 2014 at 3:41 am
From your profile it appears you are stage III, is that correct? If so, why are you asking about the BRAF inhibitors, is your doctor planning on putting you on them (just curious)?
There are 2 BRAF inhibitors out there and I only have personal experience with one of them: Dabrafenib (aka Tafinlar). I have been taking this medication along with the MEK inhibitor (Trametinib, aka Mekenist) for just over one month. I began both medications at the same time, so if you'll only be taking the BRAF inhibitor this may not be of much use to you. You do not have to be tested to take the MEK inhibitor along with the BRAF inhibitors and the studies have shown that the side effects of taking both drugs together are fewer and less severe than the side effects of either drug by itself, while actually increasing the effectiveness of the drugs and increasing the length of response. All good things.
I have honestly had no noticable side effects- no skin issues, no GI issues, no eye issues, no nothing as far as I can tell. I know others have reported some fevers (the one side effect that is more likely with the combo), and a few people have reported itchy skin or rash, but most of the people report very few and generally very mild side effects from these drugs. If you begin taking them they will monitor your bloodwork pretty closely to make sure your liver is tolerating them well, though.
Hope some of this helps
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- January 17, 2014 at 5:44 pm
I only took the BRAF called Zelboraf/vemurafenib. I was maximum dose of 8 pills per day for over 8 weeks.
The side affects for me were over 20 of them. The worse was the non mel skin cancers they had to do surgery on, rash from my neck to my ankles and of course major sensitivity to sunlight. Oh and the stomach issues where I could barely eat.
But according to my Dr everyone is different with these medicines.
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- January 17, 2014 at 5:44 pm
I only took the BRAF called Zelboraf/vemurafenib. I was maximum dose of 8 pills per day for over 8 weeks.
The side affects for me were over 20 of them. The worse was the non mel skin cancers they had to do surgery on, rash from my neck to my ankles and of course major sensitivity to sunlight. Oh and the stomach issues where I could barely eat.
But according to my Dr everyone is different with these medicines.
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- January 17, 2014 at 5:44 pm
I only took the BRAF called Zelboraf/vemurafenib. I was maximum dose of 8 pills per day for over 8 weeks.
The side affects for me were over 20 of them. The worse was the non mel skin cancers they had to do surgery on, rash from my neck to my ankles and of course major sensitivity to sunlight. Oh and the stomach issues where I could barely eat.
But according to my Dr everyone is different with these medicines.
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- January 17, 2014 at 9:22 pm
Had "Z" when it was first approved.Was on it for 23 months till it stopped woking. Side affects were all over the place.Had som issues with sqamuos cell to head that had to be removed within the first 6 months. had a case of the runs at least 1 every 5-6 weeks that lasted about 2or 3 days.Very few instances of joint pain in shoulders or wrists.Sensitive to sun but never got burnt just red.All were really minor and tolerable.Some users had many more and more severe side affects.Well worth the time it gave me.Praying the new "D" ( dabrafenib ) works ecen better.Prayers sent your way for a very long and tolerable run with "Z".
aldakota22
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- January 17, 2014 at 9:22 pm
Had "Z" when it was first approved.Was on it for 23 months till it stopped woking. Side affects were all over the place.Had som issues with sqamuos cell to head that had to be removed within the first 6 months. had a case of the runs at least 1 every 5-6 weeks that lasted about 2or 3 days.Very few instances of joint pain in shoulders or wrists.Sensitive to sun but never got burnt just red.All were really minor and tolerable.Some users had many more and more severe side affects.Well worth the time it gave me.Praying the new "D" ( dabrafenib ) works ecen better.Prayers sent your way for a very long and tolerable run with "Z".
aldakota22
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- January 17, 2014 at 9:22 pm
Had "Z" when it was first approved.Was on it for 23 months till it stopped woking. Side affects were all over the place.Had som issues with sqamuos cell to head that had to be removed within the first 6 months. had a case of the runs at least 1 every 5-6 weeks that lasted about 2or 3 days.Very few instances of joint pain in shoulders or wrists.Sensitive to sun but never got burnt just red.All were really minor and tolerable.Some users had many more and more severe side affects.Well worth the time it gave me.Praying the new "D" ( dabrafenib ) works ecen better.Prayers sent your way for a very long and tolerable run with "Z".
aldakota22
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