› Forums › General Melanoma Community › Zelboraf
- This topic has 21 replies, 6 voices, and was last updated 12 years, 9 months ago by
frosbac.
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- January 27, 2012 at 2:03 am
I'm going to start taking the 8 pills a day and would like to hear what side effects those taking this drug have experienced. If you aren't experiencing severe side effects I would like to hear from you too.
I'm going to start taking the 8 pills a day and would like to hear what side effects those taking this drug have experienced. If you aren't experiencing severe side effects I would like to hear from you too.
- Replies
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- January 27, 2012 at 3:43 am
I have been on Zelboraf since 9/12/11. The side effects have been not really too bad.At first minor joint pain for 2or3 days in the foot or shoulder That stopped after a few weeks.Occasionally you will get a occasional case of the runs.You do get plenty of gas though.eventually you will loose your hair.Definitely stay covered up when going outdoors.All in all very doable.The Zelboraf worked within 2 days and is continueing to work Thank God. All the best to you . Al
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- January 27, 2012 at 3:43 am
I have been on Zelboraf since 9/12/11. The side effects have been not really too bad.At first minor joint pain for 2or3 days in the foot or shoulder That stopped after a few weeks.Occasionally you will get a occasional case of the runs.You do get plenty of gas though.eventually you will loose your hair.Definitely stay covered up when going outdoors.All in all very doable.The Zelboraf worked within 2 days and is continueing to work Thank God. All the best to you . Al
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- January 27, 2012 at 3:43 am
I have been on Zelboraf since 9/12/11. The side effects have been not really too bad.At first minor joint pain for 2or3 days in the foot or shoulder That stopped after a few weeks.Occasionally you will get a occasional case of the runs.You do get plenty of gas though.eventually you will loose your hair.Definitely stay covered up when going outdoors.All in all very doable.The Zelboraf worked within 2 days and is continueing to work Thank God. All the best to you . Al
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- January 27, 2012 at 5:32 am
I have a bunch of side effects, but not sure if they are due to craniotomy, drugs (Zelboraf & steroids) or disease. My side effects are: fatigue (big problem some days. I am usually a very active person – I run, lift weights, but lately I have been sleeping all day), problems with my hearing (constant ringing in left ear and hearing loss), loss of vison in right eye, and loss of taste. I take 8 pills a day too.
David
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- January 27, 2012 at 6:21 am
Hi my dad is on the maximum 8 pills a day, he has extreme sun sensitivity, lost nearly all his body hair and very thin on top. Sore joints which moves around daily. Slight fatigue but nothing too serious. From what I understand the higher the tumor burden the worse the side effects.
Take care and hope it works for you.
Nahmi
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- January 27, 2012 at 6:21 am
Hi my dad is on the maximum 8 pills a day, he has extreme sun sensitivity, lost nearly all his body hair and very thin on top. Sore joints which moves around daily. Slight fatigue but nothing too serious. From what I understand the higher the tumor burden the worse the side effects.
Take care and hope it works for you.
Nahmi
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- January 27, 2012 at 6:21 am
Hi my dad is on the maximum 8 pills a day, he has extreme sun sensitivity, lost nearly all his body hair and very thin on top. Sore joints which moves around daily. Slight fatigue but nothing too serious. From what I understand the higher the tumor burden the worse the side effects.
Take care and hope it works for you.
Nahmi
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- January 27, 2012 at 5:32 am
I have a bunch of side effects, but not sure if they are due to craniotomy, drugs (Zelboraf & steroids) or disease. My side effects are: fatigue (big problem some days. I am usually a very active person – I run, lift weights, but lately I have been sleeping all day), problems with my hearing (constant ringing in left ear and hearing loss), loss of vison in right eye, and loss of taste. I take 8 pills a day too.
David
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- January 27, 2012 at 5:32 am
I have a bunch of side effects, but not sure if they are due to craniotomy, drugs (Zelboraf & steroids) or disease. My side effects are: fatigue (big problem some days. I am usually a very active person – I run, lift weights, but lately I have been sleeping all day), problems with my hearing (constant ringing in left ear and hearing loss), loss of vison in right eye, and loss of taste. I take 8 pills a day too.
David
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- January 27, 2012 at 1:14 pm
I am part of the phase II trial and have been taking the full 960mg dose twice a day continuously since March 2010. (My profile has information concerning tumor reduction if interested.) As to side effects, I would have to admit that they were never debilitating but at times some were very painful; some came on very quick and I still have them and some have pretty much disappeared.
Almost immediately, I developed a rash on my entire body but never on my face and the rash is still evident today. Extreme photosensitivity also was quick to start and continues. Sunscreen, special SPF rated clothing and wide brim hats will be some of your best friends.
I’m not sure when it started, but I did have body hair loss. I’m 65 and the hair on my head was already thinning so I do not know if Zelboraf contributed to additional head hair loss but it definitely did not all fall out although the texture did change. Today body hair has mostly returned although much thinner.
I developed many small warts on different parts of my body. Those that were sore were taken off and biopsied. One such wart turned out to be a cutaneous squamous cell carcinoma that was successfully removed with Mohs surgery.
I developed neuropathy in both feet and it was very painful for a time. I got new shoes (much wider) and today I only have mild discomfort from time to time. There was also a period when my ankles and feet were swollen. The swelling is much better and is just a minor annoyance on my left side.
As to joint pain, there are mornings that it is difficult to get going especially up and down stairs. Similar to the head hair loss, my knees were sore prior to starting Zelboraf (arthritis?) so I am not sure of the cause.
Best of luck to you.
Dick
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- January 27, 2012 at 1:14 pm
I am part of the phase II trial and have been taking the full 960mg dose twice a day continuously since March 2010. (My profile has information concerning tumor reduction if interested.) As to side effects, I would have to admit that they were never debilitating but at times some were very painful; some came on very quick and I still have them and some have pretty much disappeared.
Almost immediately, I developed a rash on my entire body but never on my face and the rash is still evident today. Extreme photosensitivity also was quick to start and continues. Sunscreen, special SPF rated clothing and wide brim hats will be some of your best friends.
I’m not sure when it started, but I did have body hair loss. I’m 65 and the hair on my head was already thinning so I do not know if Zelboraf contributed to additional head hair loss but it definitely did not all fall out although the texture did change. Today body hair has mostly returned although much thinner.
I developed many small warts on different parts of my body. Those that were sore were taken off and biopsied. One such wart turned out to be a cutaneous squamous cell carcinoma that was successfully removed with Mohs surgery.
I developed neuropathy in both feet and it was very painful for a time. I got new shoes (much wider) and today I only have mild discomfort from time to time. There was also a period when my ankles and feet were swollen. The swelling is much better and is just a minor annoyance on my left side.
As to joint pain, there are mornings that it is difficult to get going especially up and down stairs. Similar to the head hair loss, my knees were sore prior to starting Zelboraf (arthritis?) so I am not sure of the cause.
Best of luck to you.
Dick
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- January 27, 2012 at 1:14 pm
I am part of the phase II trial and have been taking the full 960mg dose twice a day continuously since March 2010. (My profile has information concerning tumor reduction if interested.) As to side effects, I would have to admit that they were never debilitating but at times some were very painful; some came on very quick and I still have them and some have pretty much disappeared.
Almost immediately, I developed a rash on my entire body but never on my face and the rash is still evident today. Extreme photosensitivity also was quick to start and continues. Sunscreen, special SPF rated clothing and wide brim hats will be some of your best friends.
I’m not sure when it started, but I did have body hair loss. I’m 65 and the hair on my head was already thinning so I do not know if Zelboraf contributed to additional head hair loss but it definitely did not all fall out although the texture did change. Today body hair has mostly returned although much thinner.
I developed many small warts on different parts of my body. Those that were sore were taken off and biopsied. One such wart turned out to be a cutaneous squamous cell carcinoma that was successfully removed with Mohs surgery.
I developed neuropathy in both feet and it was very painful for a time. I got new shoes (much wider) and today I only have mild discomfort from time to time. There was also a period when my ankles and feet were swollen. The swelling is much better and is just a minor annoyance on my left side.
As to joint pain, there are mornings that it is difficult to get going especially up and down stairs. Similar to the head hair loss, my knees were sore prior to starting Zelboraf (arthritis?) so I am not sure of the cause.
Best of luck to you.
Dick
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- January 31, 2012 at 1:17 am
Thanks for the input on side effects. Are any of you continuing to work while taking Zelboraf? My hope is to continue life as "normal" as possible.
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- January 31, 2012 at 11:53 am
Kellie
I worked full time for the first nine months on Zelboraf with the only time off being time spent going for scheduled doctor visits and scans. I then retired, and two days later, decided to fall and break my arm just below the shoulder.
It took several months before I felt like doing things, but now my only problem is the sun sensitivity (my main hobby is gardening). I have not allowed other side effects to slow me down.
Dick -
- January 31, 2012 at 11:53 am
Kellie
I worked full time for the first nine months on Zelboraf with the only time off being time spent going for scheduled doctor visits and scans. I then retired, and two days later, decided to fall and break my arm just below the shoulder.
It took several months before I felt like doing things, but now my only problem is the sun sensitivity (my main hobby is gardening). I have not allowed other side effects to slow me down.
Dick -
- January 31, 2012 at 11:53 am
Kellie
I worked full time for the first nine months on Zelboraf with the only time off being time spent going for scheduled doctor visits and scans. I then retired, and two days later, decided to fall and break my arm just below the shoulder.
It took several months before I felt like doing things, but now my only problem is the sun sensitivity (my main hobby is gardening). I have not allowed other side effects to slow me down.
Dick
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- August 5, 2012 at 6:47 pm
I have been on Zelboraf since Sept 2011
I have had severe sun reaction, 2nd degree burns, loss of all body hair, joint pain mainly in my knees,failing eyesight and
loss, of hearing, fatigue. Other than that every thin is fine. I am now only taking half dose. If I quit the tumors quickly return. I have been battling this for 17 years and am very fortunate
Tim
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- August 5, 2012 at 6:47 pm
I have been on Zelboraf since Sept 2011
I have had severe sun reaction, 2nd degree burns, loss of all body hair, joint pain mainly in my knees,failing eyesight and
loss, of hearing, fatigue. Other than that every thin is fine. I am now only taking half dose. If I quit the tumors quickly return. I have been battling this for 17 years and am very fortunate
Tim
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- August 5, 2012 at 6:47 pm
I have been on Zelboraf since Sept 2011
I have had severe sun reaction, 2nd degree burns, loss of all body hair, joint pain mainly in my knees,failing eyesight and
loss, of hearing, fatigue. Other than that every thin is fine. I am now only taking half dose. If I quit the tumors quickly return. I have been battling this for 17 years and am very fortunate
Tim
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