@linda56
Forum Replies Created
- Replies
-
-
- 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 -
- December 7, 2014 at 3:24 pm
Hello Rick,
Thank you, I will indeed have a worryfree Christmas and hope the same for you.
I had monthly blood tests which did not show any progression. My blood tests have always been good.
It was just the scan that showed sometimes lesions. I had this for a few months in 2013 and again in 2014.
So, you see that must never despair.
Kind regards.
-
- December 7, 2014 at 3:24 pm
Hello Rick,
Thank you, I will indeed have a worryfree Christmas and hope the same for you.
I had monthly blood tests which did not show any progression. My blood tests have always been good.
It was just the scan that showed sometimes lesions. I had this for a few months in 2013 and again in 2014.
So, you see that must never despair.
Kind regards.
-
- December 7, 2014 at 3:24 pm
Hello Rick,
Thank you, I will indeed have a worryfree Christmas and hope the same for you.
I had monthly blood tests which did not show any progression. My blood tests have always been good.
It was just the scan that showed sometimes lesions. I had this for a few months in 2013 and again in 2014.
So, you see that must never despair.
Kind regards.
-
- February 3, 2014 at 7:01 pm
Hello,
I'm taking Zelboraf (Vemurafenib) since August 2012, now almost one year and a half and what the side effects are concerned, I can say that they become better the longer you take the medication. Although that some side effects never go away (like skin problems, painful hands and feet, joint pain), I think that this is a small price to pay for living a reasonable life without progress of the disease. I was NED for a few months last year (from May to September) when my pet-scan showed minor acitivity again. I still continued the vemurafenib treatment and since the pet-scan of January 2014 I am NED again. The Zelboraf is still working for me and I'm very thankful for this.
I must say that in the beginning I experienced the worst side effects, but it seems that the body gets used to it. When I started the pills when one side effect dissappeared, there was another one that came around the corner. But it's worthwile to continue the Zelboraf.
Don't give up !
Kind regards
Linda
-
- February 3, 2014 at 7:01 pm
Hello,
I'm taking Zelboraf (Vemurafenib) since August 2012, now almost one year and a half and what the side effects are concerned, I can say that they become better the longer you take the medication. Although that some side effects never go away (like skin problems, painful hands and feet, joint pain), I think that this is a small price to pay for living a reasonable life without progress of the disease. I was NED for a few months last year (from May to September) when my pet-scan showed minor acitivity again. I still continued the vemurafenib treatment and since the pet-scan of January 2014 I am NED again. The Zelboraf is still working for me and I'm very thankful for this.
I must say that in the beginning I experienced the worst side effects, but it seems that the body gets used to it. When I started the pills when one side effect dissappeared, there was another one that came around the corner. But it's worthwile to continue the Zelboraf.
Don't give up !
Kind regards
Linda
