› Forums › General Melanoma Community › Zelboraf side effects, how long do they last!
- This topic has 30 replies, 6 voices, and was last updated 10 years, 10 months ago by
Kim_H.
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- June 25, 2013 at 2:47 pm
Hello! I’ve been on Zelboraf for almost 7 months now and the side effects are still happening just as bad as they were when I first started taking the drug! Does anyone know if they’ll Ever subside or stop all together?? Thanks for any insight that can be given.Hello! I’ve been on Zelboraf for almost 7 months now and the side effects are still happening just as bad as they were when I first started taking the drug! Does anyone know if they’ll Ever subside or stop all together?? Thanks for any insight that can be given.
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- June 25, 2013 at 6:24 pm
Hi Kim, Oh how I wish you were not here asking this question. You do not specify what side effects you are asking about so I will respond in some generalities (there are more details in my profile).
For me, most side effects went away over a period of several months, most notably joint pain, hair loss, fatigue, and warts. Some side effects I still have – neuropathy in feet (nothing like it was) and a mild rash. The side effect that I still have that has not gone away at all is photosensitivity; I can get a sunburn just an hour after sunrise.
Also, I have had some issues with my bilirubin being high. That has been an issue since last fall but I seem to have it under control with proper hydration. I'm coming up on using Zelboraf for 40 months, and I consider my side effects to be a very small price to pay.
Hope this helps, other Zelboraf users will surely chime in with their experience. Best of luck.
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- June 25, 2013 at 6:24 pm
Hi Kim, Oh how I wish you were not here asking this question. You do not specify what side effects you are asking about so I will respond in some generalities (there are more details in my profile).
For me, most side effects went away over a period of several months, most notably joint pain, hair loss, fatigue, and warts. Some side effects I still have – neuropathy in feet (nothing like it was) and a mild rash. The side effect that I still have that has not gone away at all is photosensitivity; I can get a sunburn just an hour after sunrise.
Also, I have had some issues with my bilirubin being high. That has been an issue since last fall but I seem to have it under control with proper hydration. I'm coming up on using Zelboraf for 40 months, and I consider my side effects to be a very small price to pay.
Hope this helps, other Zelboraf users will surely chime in with their experience. Best of luck.
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- June 26, 2013 at 3:41 pm
Hi Kim,
I know a lot of people (including me!) have gone down to 6 pills/day, 3 morning/3 night, and that seems to help the side-effects considerably. when I was still on 4/4, I literally could not go up or down even one step due to the joint-pain. Luckilly, I never had the rash, had one or two fevers, but definately had sun sensitivity. Even on the lower dose, my arm (which had sunscreen on it) got sunburnt while I was driving the car!) Also, when the pain was at its worst, I was prescribed a short course of Prednisone, which helped a lot.
all the best,
Karen -
- June 26, 2013 at 3:41 pm
Hi Kim,
I know a lot of people (including me!) have gone down to 6 pills/day, 3 morning/3 night, and that seems to help the side-effects considerably. when I was still on 4/4, I literally could not go up or down even one step due to the joint-pain. Luckilly, I never had the rash, had one or two fevers, but definately had sun sensitivity. Even on the lower dose, my arm (which had sunscreen on it) got sunburnt while I was driving the car!) Also, when the pain was at its worst, I was prescribed a short course of Prednisone, which helped a lot.
all the best,
Karen -
- June 26, 2013 at 3:41 pm
Hi Kim,
I know a lot of people (including me!) have gone down to 6 pills/day, 3 morning/3 night, and that seems to help the side-effects considerably. when I was still on 4/4, I literally could not go up or down even one step due to the joint-pain. Luckilly, I never had the rash, had one or two fevers, but definately had sun sensitivity. Even on the lower dose, my arm (which had sunscreen on it) got sunburnt while I was driving the car!) Also, when the pain was at its worst, I was prescribed a short course of Prednisone, which helped a lot.
all the best,
Karen -
- July 3, 2013 at 3:42 pm
Thank you Al!! My side effects seem to be never ending! My hair is still falling out (so I shave it), pretty much constant joint pain, headaches, major diarrhea ( sorry probably too much info) and my eye joints are always achy. Sometimes I think that I am just over taking this junk but in the same breathe I realize how much it is working! So I will continue on and just hope that my hard headed attitude will get me through the side effects! So again I thank you so much for your input and I wish you the best of luck and God Bless you and your family!
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- July 3, 2013 at 3:42 pm
Thank you Al!! My side effects seem to be never ending! My hair is still falling out (so I shave it), pretty much constant joint pain, headaches, major diarrhea ( sorry probably too much info) and my eye joints are always achy. Sometimes I think that I am just over taking this junk but in the same breathe I realize how much it is working! So I will continue on and just hope that my hard headed attitude will get me through the side effects! So again I thank you so much for your input and I wish you the best of luck and God Bless you and your family!
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- July 3, 2013 at 3:42 pm
Thank you Al!! My side effects seem to be never ending! My hair is still falling out (so I shave it), pretty much constant joint pain, headaches, major diarrhea ( sorry probably too much info) and my eye joints are always achy. Sometimes I think that I am just over taking this junk but in the same breathe I realize how much it is working! So I will continue on and just hope that my hard headed attitude will get me through the side effects! So again I thank you so much for your input and I wish you the best of luck and God Bless you and your family!
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- June 25, 2013 at 6:24 pm
Hi Kim, Oh how I wish you were not here asking this question. You do not specify what side effects you are asking about so I will respond in some generalities (there are more details in my profile).
For me, most side effects went away over a period of several months, most notably joint pain, hair loss, fatigue, and warts. Some side effects I still have – neuropathy in feet (nothing like it was) and a mild rash. The side effect that I still have that has not gone away at all is photosensitivity; I can get a sunburn just an hour after sunrise.
Also, I have had some issues with my bilirubin being high. That has been an issue since last fall but I seem to have it under control with proper hydration. I'm coming up on using Zelboraf for 40 months, and I consider my side effects to be a very small price to pay.
Hope this helps, other Zelboraf users will surely chime in with their experience. Best of luck.
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- June 25, 2013 at 6:59 pm
My husband has been on Z for 20 months. Joint pain is still there, along with sun sensitivity. The rash is mostly gone, along with the hair loss. It took awhile….months. He’s never had to deal with the foot pain or warts. He’s had to take some breaks due to the meds overworking his kidneys and liver, but has been on it almost continually for the 20 months. -
- June 25, 2013 at 6:59 pm
My husband has been on Z for 20 months. Joint pain is still there, along with sun sensitivity. The rash is mostly gone, along with the hair loss. It took awhile….months. He’s never had to deal with the foot pain or warts. He’s had to take some breaks due to the meds overworking his kidneys and liver, but has been on it almost continually for the 20 months. -
- June 25, 2013 at 6:59 pm
My husband has been on Z for 20 months. Joint pain is still there, along with sun sensitivity. The rash is mostly gone, along with the hair loss. It took awhile….months. He’s never had to deal with the foot pain or warts. He’s had to take some breaks due to the meds overworking his kidneys and liver, but has been on it almost continually for the 20 months. -
- June 25, 2013 at 8:58 pm
As havig been on"Z" at full dose for 21 months I can tell you that the side affects are always changing.At first I had loss of body hair,changes in taste, bouts of crazy itching,some joint pain ,and every 3 weeks or so, a 2 or 3 day bout with the runs.Never had as extreme sensitivty to sun as most.The side effects lasted for weeks at a time and then lessened to be almost un-noticeable. They still are there but you accept them I did get my taste back.,thank God..You are one tough girl and I know you can tough it out till things get better .In my prayers that it comes soon. Beat the Beast. Al
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- June 25, 2013 at 8:58 pm
As havig been on"Z" at full dose for 21 months I can tell you that the side affects are always changing.At first I had loss of body hair,changes in taste, bouts of crazy itching,some joint pain ,and every 3 weeks or so, a 2 or 3 day bout with the runs.Never had as extreme sensitivty to sun as most.The side effects lasted for weeks at a time and then lessened to be almost un-noticeable. They still are there but you accept them I did get my taste back.,thank God..You are one tough girl and I know you can tough it out till things get better .In my prayers that it comes soon. Beat the Beast. Al
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- June 25, 2013 at 8:58 pm
As havig been on"Z" at full dose for 21 months I can tell you that the side affects are always changing.At first I had loss of body hair,changes in taste, bouts of crazy itching,some joint pain ,and every 3 weeks or so, a 2 or 3 day bout with the runs.Never had as extreme sensitivty to sun as most.The side effects lasted for weeks at a time and then lessened to be almost un-noticeable. They still are there but you accept them I did get my taste back.,thank God..You are one tough girl and I know you can tough it out till things get better .In my prayers that it comes soon. Beat the Beast. Al
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- July 3, 2013 at 3:28 pm
You are so right David I just realized that I did not list all of the side effects that I was having but at the time I posted this I was having one of my very bad days and I think I was just looking for quick answers in general so I apologize for my lack of information. I thank you so much for your input though and I wish you luck and much success and continued healing! Thank you again!
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- July 3, 2013 at 3:28 pm
You are so right David I just realized that I did not list all of the side effects that I was having but at the time I posted this I was having one of my very bad days and I think I was just looking for quick answers in general so I apologize for my lack of information. I thank you so much for your input though and I wish you luck and much success and continued healing! Thank you again!
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- July 3, 2013 at 3:28 pm
You are so right David I just realized that I did not list all of the side effects that I was having but at the time I posted this I was having one of my very bad days and I think I was just looking for quick answers in general so I apologize for my lack of information. I thank you so much for your input though and I wish you luck and much success and continued healing! Thank you again!
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