INFO. ON ZELBORAF

Well everyone is different. I'm suprised you are doing zelboraf instead of the tafinlar mekenist combo. I did both and for me the combo had way fewer side affects. But everyone is different.

Anyway for zelboraf I has at least 24 side affects. Fortunately none were permanent. First is sunlight. Just 30 seconds of exposed skin caused a Squamish cell that got to the size of a nickel before they had to cut it out twice. They also cut one out of my leg and froze dozens. Keep in mind before zelboraf they never found anything except one basil cell on my skin. To help was to wear full protective clothing including a face visor. Also some of the house windows were not good enough so had to board them up. Also had that sun film put in the car was a must so I didn't have to wear as much head gear in the car.

Another major side affect was eating. I would take a couple bites and I felt stuffed. Of course I wasnt. The nurse said to eat several small meals a day which helped a little. Mostly I would eat a half bite and get it down after about ten minutes. Then another half bite and so on.

Another significant was the rash and itching. I had a rash from my neck to my ankles so thick you couldn't find a spot the size of a pencil eraser that was clear. It started within a few days. It spread so rapidly I was eating breakfast which was way before the eating problems and you could literally see it spread up my arm.

Ive heard the joint pains can be severe but I didn't have any.

The rest are fairly minor if I remember right like the fevers , diahrrea nausea and stuff lke that. I would have to look in my log to see those painful memories but I think those are the main ones. Also I was only his second of over a thousand patients that had everything grow while on it so maybe that's why I had so many side affects I dunno. The combo pills I only had fevers then at the end a few days of really bad fevers shakes chills and stuff. But at least most things didn't grow. But again everyone is different.

Also at Siteman in saint Louis and other places is a ERK trial with immediate openings. ERK is further up or is it down the chain than braf. Based on my experience with these meds I decided to pursue a different treatment for now.

Artie

Well everyone is different. I'm suprised you are doing zelboraf instead of the tafinlar mekenist combo. I did both and for me the combo had way fewer side affects. But everyone is different.

Anyway for zelboraf I has at least 24 side affects. Fortunately none were permanent. First is sunlight. Just 30 seconds of exposed skin caused a Squamish cell that got to the size of a nickel before they had to cut it out twice. They also cut one out of my leg and froze dozens. Keep in mind before zelboraf they never found anything except one basil cell on my skin. To help was to wear full protective clothing including a face visor. Also some of the house windows were not good enough so had to board them up. Also had that sun film put in the car was a must so I didn't have to wear as much head gear in the car.

Another major side affect was eating. I would take a couple bites and I felt stuffed. Of course I wasnt. The nurse said to eat several small meals a day which helped a little. Mostly I would eat a half bite and get it down after about ten minutes. Then another half bite and so on.

Another significant was the rash and itching. I had a rash from my neck to my ankles so thick you couldn't find a spot the size of a pencil eraser that was clear. It started within a few days. It spread so rapidly I was eating breakfast which was way before the eating problems and you could literally see it spread up my arm.

Ive heard the joint pains can be severe but I didn't have any.

The rest are fairly minor if I remember right like the fevers , diahrrea nausea and stuff lke that. I would have to look in my log to see those painful memories but I think those are the main ones. Also I was only his second of over a thousand patients that had everything grow while on it so maybe that's why I had so many side affects I dunno. The combo pills I only had fevers then at the end a few days of really bad fevers shakes chills and stuff. But at least most things didn't grow. But again everyone is different.

Also at Siteman in saint Louis and other places is a ERK trial with immediate openings. ERK is further up or is it down the chain than braf. Based on my experience with these meds I decided to pursue a different treatment for now.

Artie

Well everyone is different. I'm suprised you are doing zelboraf instead of the tafinlar mekenist combo. I did both and for me the combo had way fewer side affects. But everyone is different.

Anyway for zelboraf I has at least 24 side affects. Fortunately none were permanent. First is sunlight. Just 30 seconds of exposed skin caused a Squamish cell that got to the size of a nickel before they had to cut it out twice. They also cut one out of my leg and froze dozens. Keep in mind before zelboraf they never found anything except one basil cell on my skin. To help was to wear full protective clothing including a face visor. Also some of the house windows were not good enough so had to board them up. Also had that sun film put in the car was a must so I didn't have to wear as much head gear in the car.

Another major side affect was eating. I would take a couple bites and I felt stuffed. Of course I wasnt. The nurse said to eat several small meals a day which helped a little. Mostly I would eat a half bite and get it down after about ten minutes. Then another half bite and so on.

Another significant was the rash and itching. I had a rash from my neck to my ankles so thick you couldn't find a spot the size of a pencil eraser that was clear. It started within a few days. It spread so rapidly I was eating breakfast which was way before the eating problems and you could literally see it spread up my arm.

Ive heard the joint pains can be severe but I didn't have any.

The rest are fairly minor if I remember right like the fevers , diahrrea nausea and stuff lke that. I would have to look in my log to see those painful memories but I think those are the main ones. Also I was only his second of over a thousand patients that had everything grow while on it so maybe that's why I had so many side affects I dunno. The combo pills I only had fevers then at the end a few days of really bad fevers shakes chills and stuff. But at least most things didn't grow. But again everyone is different.

Also at Siteman in saint Louis and other places is a ERK trial with immediate openings. ERK is further up or is it down the chain than braf. Based on my experience with these meds I decided to pursue a different treatment for now.

Artie

I am a little past five years on Zelboraf having started as part of the phase II trial in March 2010 and I continue today on a reduced dosage of 720 mg 2x a day.

 As mentioned in an earlier post, everyone is different, but here is what I experienced.

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 most 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 became some of my best friends.

I’m not sure when it started, but I did have body hair loss.  At the time I was 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.

I also have had difficulty controlling by bilirubin (liver).  When it got too high, I ended up taking a one week Zelboraf holiday.

Hope this helps, and good luck to you. 

I am a little past five years on Zelboraf having started as part of the phase II trial in March 2010 and I continue today on a reduced dosage of 720 mg 2x a day.

 As mentioned in an earlier post, everyone is different, but here is what I experienced.

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 most 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 became some of my best friends.

I’m not sure when it started, but I did have body hair loss.  At the time I was 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.

I also have had difficulty controlling by bilirubin (liver).  When it got too high, I ended up taking a one week Zelboraf holiday.

Hope this helps, and good luck to you. 

I am a little past five years on Zelboraf having started as part of the phase II trial in March 2010 and I continue today on a reduced dosage of 720 mg 2x a day.

 As mentioned in an earlier post, everyone is different, but here is what I experienced.

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 most 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 became some of my best friends.

I’m not sure when it started, but I did have body hair loss.  At the time I was 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.

I also have had difficulty controlling by bilirubin (liver).  When it got too high, I ended up taking a one week Zelboraf holiday.

Hope this helps, and good luck to you. 

Have been taking Zelboraf since Sept. 2011. Side effects seem to be different for everyone although mine seem to parallel Richards. The sun has been unforgiving the whole time, burns occur quickly and I always miss a spot with sunscreen so at least for me the burn was preventable. Pain in lower legs the 1st 2 months, although I was able to run up to 4 miles the 3rd month. That didn't last long as pain in the front bottom of feet started (that was the worst side effect for me). Arthritic pain seemed to move from hands/ wrists to ankles/knees from left to right sides sometimes. Arthritic pain " from medicine" seemed to go away after maybe 4 months. Feet are still a little painful, nothing like the 1st year. Hair on the entire body seemed to diminish.

Overall the side effects have been very minimal compared to what a lot of people go through with tmelanoma, everyone is different. I was able to work for 2 1/2 years and began to feel physically and mentally drained. Still enjoy a little biking and a little walking, try to stay active.

Hope this helps and wish you the best.

Bruce

Have been taking Zelboraf since Sept. 2011. Side effects seem to be different for everyone although mine seem to parallel Richards. The sun has been unforgiving the whole time, burns occur quickly and I always miss a spot with sunscreen so at least for me the burn was preventable. Pain in lower legs the 1st 2 months, although I was able to run up to 4 miles the 3rd month. That didn't last long as pain in the front bottom of feet started (that was the worst side effect for me). Arthritic pain seemed to move from hands/ wrists to ankles/knees from left to right sides sometimes. Arthritic pain " from medicine" seemed to go away after maybe 4 months. Feet are still a little painful, nothing like the 1st year. Hair on the entire body seemed to diminish.

Overall the side effects have been very minimal compared to what a lot of people go through with tmelanoma, everyone is different. I was able to work for 2 1/2 years and began to feel physically and mentally drained. Still enjoy a little biking and a little walking, try to stay active.

Hope this helps and wish you the best.

Bruce

Have been taking Zelboraf since Sept. 2011. Side effects seem to be different for everyone although mine seem to parallel Richards. The sun has been unforgiving the whole time, burns occur quickly and I always miss a spot with sunscreen so at least for me the burn was preventable. Pain in lower legs the 1st 2 months, although I was able to run up to 4 miles the 3rd month. That didn't last long as pain in the front bottom of feet started (that was the worst side effect for me). Arthritic pain seemed to move from hands/ wrists to ankles/knees from left to right sides sometimes. Arthritic pain " from medicine" seemed to go away after maybe 4 months. Feet are still a little painful, nothing like the 1st year. Hair on the entire body seemed to diminish.

Overall the side effects have been very minimal compared to what a lot of people go through with tmelanoma, everyone is different. I was able to work for 2 1/2 years and began to feel physically and mentally drained. Still enjoy a little biking and a little walking, try to stay active.

Hope this helps and wish you the best.

Bruce