› Forums › General Melanoma Community › Zelboraf long time user
- This topic has 12 replies, 4 voices, and was last updated 9 years ago by
Bruce Davis.
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- April 13, 2015 at 10:36 am
Hi,
My dad has Malignant Melanoma for the past 7 month. He had a tumor removed from his head, radiation to the area, prescribed Tafinlar for 3.5 month but was taking off due to hard side effects, and now he started using Zelboraf. I am looking for someone who has been using this medication for a long time (maybe years) who can shed some light on his day to day life with this drug. How bad are the side effects.
Thank you and be well,
Tal
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- April 14, 2015 at 9:43 am
My wife is under zelboraf since august 2014 and it is still working
in first days all melanoma syntoms went away and at first scan there was tumor strink in size and number, so well in second and in third (but less)
She had collateral effect as rush fever hair lost muscolar pain all in the first mouths, but no one was too eavy and went on for less then a week.
She is able to go out in sunny days with sun glasses and sun cream
We are really happy with it , but of course warning and caring about any syntom
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- April 14, 2015 at 9:43 am
My wife is under zelboraf since august 2014 and it is still working
in first days all melanoma syntoms went away and at first scan there was tumor strink in size and number, so well in second and in third (but less)
She had collateral effect as rush fever hair lost muscolar pain all in the first mouths, but no one was too eavy and went on for less then a week.
She is able to go out in sunny days with sun glasses and sun cream
We are really happy with it , but of course warning and caring about any syntom
-
- April 14, 2015 at 9:43 am
My wife is under zelboraf since august 2014 and it is still working
in first days all melanoma syntoms went away and at first scan there was tumor strink in size and number, so well in second and in third (but less)
She had collateral effect as rush fever hair lost muscolar pain all in the first mouths, but no one was too eavy and went on for less then a week.
She is able to go out in sunny days with sun glasses and sun cream
We are really happy with it , but of course warning and caring about any syntom
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- April 15, 2015 at 8:00 pm
Hello Tal,Please find hereafter my history on BRAF :
Diagnostic : stage IV in June 2012 – no primary found
Metastasis in lung/kidney/abdomen and several tumors underneath the skin on the whole body.
Poor prognosis : six to nine months, but this prognosis changed rapidly when lab results showed that I was BRAF positive. There was light again at the end of the tunnel !
BRAF inhibitor Zelboraf since August 2012
PET and CT scan every two months since then.
All tumors shrinking and dissappearing quickly. The first months severe side effects : complete hair loss, sore hands and feet, skin problems, etc… I think I went through almost every side effect that was listed in the patient information. But the longer, the more the side effects easened. My hair is now back to normal again. However, the sun sensitivity never got better on Zelboraf.
NED in May 2013
In March 2014, I started the BRAF/MEK combo (Dabrafenib/Trametinib)
Immediate relief on my feet and hands and also the sun sensitivity was much better. I am now able to go into the sun (with sunscreen) without any problems. No major side effects so far.
In April 2014 the PET scan showed a possible metastasis in the sacrum bone area. After MRI, it was decided to do radiotherapy treatment, but just before the start of the treatment, the pain was gone and so it was decided to wait until the next scan which was one month later.
The spot had not changed in growth and so nothing was done.
In August 2014 I made a bad fall and broke my hip (result hip prothesis and subsequent revalidation).
In September 2014 I had my usual scan, but due to my accident, there were too much areas of inflammation and the doctors concluded that this was probably due to my accident because of my injuries during the fall.
The next scan was planned in November 2014 and I received a very good report : completely NED again.
Since then the scan is planned every three months. The last scan beginning of February showed also NED.
As far as the side effects are concerned, I can say that especially at the start of the medication they were very severe, but at the long term they have become very manageable.I am now 33 months on the BRAF medication and NED; my next scan is in May.I hope this helps.
Kind regards.
Linda -
- April 15, 2015 at 8:00 pm
Hello Tal,Please find hereafter my history on BRAF :
Diagnostic : stage IV in June 2012 – no primary found
Metastasis in lung/kidney/abdomen and several tumors underneath the skin on the whole body.
Poor prognosis : six to nine months, but this prognosis changed rapidly when lab results showed that I was BRAF positive. There was light again at the end of the tunnel !
BRAF inhibitor Zelboraf since August 2012
PET and CT scan every two months since then.
All tumors shrinking and dissappearing quickly. The first months severe side effects : complete hair loss, sore hands and feet, skin problems, etc… I think I went through almost every side effect that was listed in the patient information. But the longer, the more the side effects easened. My hair is now back to normal again. However, the sun sensitivity never got better on Zelboraf.
NED in May 2013
In March 2014, I started the BRAF/MEK combo (Dabrafenib/Trametinib)
Immediate relief on my feet and hands and also the sun sensitivity was much better. I am now able to go into the sun (with sunscreen) without any problems. No major side effects so far.
In April 2014 the PET scan showed a possible metastasis in the sacrum bone area. After MRI, it was decided to do radiotherapy treatment, but just before the start of the treatment, the pain was gone and so it was decided to wait until the next scan which was one month later.
The spot had not changed in growth and so nothing was done.
In August 2014 I made a bad fall and broke my hip (result hip prothesis and subsequent revalidation).
In September 2014 I had my usual scan, but due to my accident, there were too much areas of inflammation and the doctors concluded that this was probably due to my accident because of my injuries during the fall.
The next scan was planned in November 2014 and I received a very good report : completely NED again.
Since then the scan is planned every three months. The last scan beginning of February showed also NED.
As far as the side effects are concerned, I can say that especially at the start of the medication they were very severe, but at the long term they have become very manageable.I am now 33 months on the BRAF medication and NED; my next scan is in May.I hope this helps.
Kind regards.
Linda -
- April 15, 2015 at 8:00 pm
Hello Tal,Please find hereafter my history on BRAF :
Diagnostic : stage IV in June 2012 – no primary found
Metastasis in lung/kidney/abdomen and several tumors underneath the skin on the whole body.
Poor prognosis : six to nine months, but this prognosis changed rapidly when lab results showed that I was BRAF positive. There was light again at the end of the tunnel !
BRAF inhibitor Zelboraf since August 2012
PET and CT scan every two months since then.
All tumors shrinking and dissappearing quickly. The first months severe side effects : complete hair loss, sore hands and feet, skin problems, etc… I think I went through almost every side effect that was listed in the patient information. But the longer, the more the side effects easened. My hair is now back to normal again. However, the sun sensitivity never got better on Zelboraf.
NED in May 2013
In March 2014, I started the BRAF/MEK combo (Dabrafenib/Trametinib)
Immediate relief on my feet and hands and also the sun sensitivity was much better. I am now able to go into the sun (with sunscreen) without any problems. No major side effects so far.
In April 2014 the PET scan showed a possible metastasis in the sacrum bone area. After MRI, it was decided to do radiotherapy treatment, but just before the start of the treatment, the pain was gone and so it was decided to wait until the next scan which was one month later.
The spot had not changed in growth and so nothing was done.
In August 2014 I made a bad fall and broke my hip (result hip prothesis and subsequent revalidation).
In September 2014 I had my usual scan, but due to my accident, there were too much areas of inflammation and the doctors concluded that this was probably due to my accident because of my injuries during the fall.
The next scan was planned in November 2014 and I received a very good report : completely NED again.
Since then the scan is planned every three months. The last scan beginning of February showed also NED.
As far as the side effects are concerned, I can say that especially at the start of the medication they were very severe, but at the long term they have become very manageable.I am now 33 months on the BRAF medication and NED; my next scan is in May.I hope this helps.
Kind regards.
Linda -
- April 16, 2015 at 4:38 pm
My side effects at first, the first month to 2 months; painful lower legs, and arms from elbow through hands. Pain would switch from Left side to Right side, sometimes legs and sometimes arms or both, seemed like arthritic pain. Thats what stands out to me for the first couple of months as being the worst.
I think people suffer from different side effects. The sun has always been difficult. Missing 1 little spot with sun-tan lotion can turn into 2nd degree burn for me after short period of time.
After about 3 months a diabetic like nerve pain went to the bottom-front of my feet. That lasted a long time months without relief, even tried cortizone shots in bottom of feet without relief. Maybe the side-effects…pain goes to the weakest parts of your body. I have high arches in feet and ran marathons. Arthritis in legs and hands.
I've been fortunate, Zelboraf shrunk the tumors in lungs significantly as I was facing 6 months to a year to live back in sept. of 2011. CT scans and blood work has come back well always. So the side effects I would say were minimal.
I was able to work for 2 1/2 years taking Zelboraf. The last year has brought fatigue and some nausea, foot pain and fluid in legs. If possible the best thing is to keep active!
Hope this helps your father and I wish him the best!
Bruce
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- April 16, 2015 at 4:38 pm
My side effects at first, the first month to 2 months; painful lower legs, and arms from elbow through hands. Pain would switch from Left side to Right side, sometimes legs and sometimes arms or both, seemed like arthritic pain. Thats what stands out to me for the first couple of months as being the worst.
I think people suffer from different side effects. The sun has always been difficult. Missing 1 little spot with sun-tan lotion can turn into 2nd degree burn for me after short period of time.
After about 3 months a diabetic like nerve pain went to the bottom-front of my feet. That lasted a long time months without relief, even tried cortizone shots in bottom of feet without relief. Maybe the side-effects…pain goes to the weakest parts of your body. I have high arches in feet and ran marathons. Arthritis in legs and hands.
I've been fortunate, Zelboraf shrunk the tumors in lungs significantly as I was facing 6 months to a year to live back in sept. of 2011. CT scans and blood work has come back well always. So the side effects I would say were minimal.
I was able to work for 2 1/2 years taking Zelboraf. The last year has brought fatigue and some nausea, foot pain and fluid in legs. If possible the best thing is to keep active!
Hope this helps your father and I wish him the best!
Bruce
-
- April 16, 2015 at 4:38 pm
My side effects at first, the first month to 2 months; painful lower legs, and arms from elbow through hands. Pain would switch from Left side to Right side, sometimes legs and sometimes arms or both, seemed like arthritic pain. Thats what stands out to me for the first couple of months as being the worst.
I think people suffer from different side effects. The sun has always been difficult. Missing 1 little spot with sun-tan lotion can turn into 2nd degree burn for me after short period of time.
After about 3 months a diabetic like nerve pain went to the bottom-front of my feet. That lasted a long time months without relief, even tried cortizone shots in bottom of feet without relief. Maybe the side-effects…pain goes to the weakest parts of your body. I have high arches in feet and ran marathons. Arthritis in legs and hands.
I've been fortunate, Zelboraf shrunk the tumors in lungs significantly as I was facing 6 months to a year to live back in sept. of 2011. CT scans and blood work has come back well always. So the side effects I would say were minimal.
I was able to work for 2 1/2 years taking Zelboraf. The last year has brought fatigue and some nausea, foot pain and fluid in legs. If possible the best thing is to keep active!
Hope this helps your father and I wish him the best!
Bruce
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