BRAF INHIBITORS

Hi Jacque,

Glad there is some progress. Hopefully, the BRAF inhibitors will help even more. It is not chemo. She shouldn't lose her hair. There are some side effects. When BRAF inhibitors are prescribed WITH MEK inhibitors side effects are less and tumor work around is decreased as well. An intermittent dosing schedule helps too! Those are things I would certainly ask the onc about. Here is a post I made re BRAF inhibitors a bit ago that may help:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

Wishing you and your daughter my best. Celeste

Hi Jacque,

Glad there is some progress. Hopefully, the BRAF inhibitors will help even more. It is not chemo. She shouldn't lose her hair. There are some side effects. When BRAF inhibitors are prescribed WITH MEK inhibitors side effects are less and tumor work around is decreased as well. An intermittent dosing schedule helps too! Those are things I would certainly ask the onc about. Here is a post I made re BRAF inhibitors a bit ago that may help:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

Wishing you and your daughter my best. Celeste

Hi Jacque,

Glad there is some progress. Hopefully, the BRAF inhibitors will help even more. It is not chemo. She shouldn't lose her hair. There are some side effects. When BRAF inhibitors are prescribed WITH MEK inhibitors side effects are less and tumor work around is decreased as well. An intermittent dosing schedule helps too! Those are things I would certainly ask the onc about. Here is a post I made re BRAF inhibitors a bit ago that may help:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

Wishing you and your daughter my best. Celeste

She shouldn't lose her hair if she is on the braf mek combo. I was on the older zelboraf and my hair looked like Larry from the 3 stooges. Almost none in the middle and sticking out the sides. It didn't take that long after though it grew back thicker and a little darker than before. I'm glad she's stable. Thst is good. Too bad the fda doesn't let her go straight to pd1 yet. Also instead of the mekinist mek inhibitor someone posted recently a different mek inhibitor that doesn't have the high fevers mekinist can cause. I dunno if she can do that outside the braf mek trial for it yet though. I was on the taf mek combo about 10 weeks and those fevers can make a normal life an issue. Otherwise the side affects were mild for me until close to the end when the fevers chills and shakes and throwing up went crazy for a few days.

Artie

She shouldn't lose her hair if she is on the braf mek combo. I was on the older zelboraf and my hair looked like Larry from the 3 stooges. Almost none in the middle and sticking out the sides. It didn't take that long after though it grew back thicker and a little darker than before. I'm glad she's stable. Thst is good. Too bad the fda doesn't let her go straight to pd1 yet. Also instead of the mekinist mek inhibitor someone posted recently a different mek inhibitor that doesn't have the high fevers mekinist can cause. I dunno if she can do that outside the braf mek trial for it yet though. I was on the taf mek combo about 10 weeks and those fevers can make a normal life an issue. Otherwise the side affects were mild for me until close to the end when the fevers chills and shakes and throwing up went crazy for a few days.

Artie

She shouldn't lose her hair if she is on the braf mek combo. I was on the older zelboraf and my hair looked like Larry from the 3 stooges. Almost none in the middle and sticking out the sides. It didn't take that long after though it grew back thicker and a little darker than before. I'm glad she's stable. Thst is good. Too bad the fda doesn't let her go straight to pd1 yet. Also instead of the mekinist mek inhibitor someone posted recently a different mek inhibitor that doesn't have the high fevers mekinist can cause. I dunno if she can do that outside the braf mek trial for it yet though. I was on the taf mek combo about 10 weeks and those fevers can make a normal life an issue. Otherwise the side affects were mild for me until close to the end when the fevers chills and shakes and throwing up went crazy for a few days.

Artie

Zelboraf was the first Treatment I was put on back in 2011. It saved my life. Within 3 months I saw a 90% reduction in disease burden. A palpable lump in my abdomen disappeared in 2 weeks. I was taken off of it not because of side effects but because my oncologist wanted to switch me to something that would have potential to have longer lasting effects (single BRAF inhibitor treatment has a median time to disease progression of about 7 months as I have been told). With that said the side effects I had were extreme sun/light sensitivity (I got 2nd degree burns on my knuckles and the side of my face while driving in a car on a sunny day…that was fixed with lots of sunscreen and driving gloves). Lactose intolerance which was remedied with lactaid before dairy. Migratory joint pain: one day my elbow would hurt, the next my knee. Some days no joint pain. Rough skin/hyperkeratosis/and uncomfortable calluses on hands and feet all managed with Ceravie Lotion and urea cream and careful foot care. Erythema nodosa (painful lumps of inflamed fat cells under the skin) those were really only painful to touch and most of the discomfort went away after a couple of days and the lumps disappear after about a weeks time. Now all of these side Effects sound like a lot but they really can be well managed and I still went to work and exercised and went on vacation. Bonuses of BRAF: 90% reduction of disease in 3months. That was reason enough for me. Extra bonuses: body hair loss but significant growth of nails and head hair..not kidding.

After the zelboraf I went through lots of other treatments including proton beam radiation to my brain mets And the immunotherapies. each one I had a fair response to but the anti-pd1 trial drug just took too long I think and things got a little too worrisome for my oncologist to let it ride. So now I am in a BRAF MEK inhibitor trial and I have been for over 2 years now (there is one combination that has already been FDA approved I think) and I have seen the reduction of my disease to where it is almost non-existent. There are side effects…a big one being fatigue and weight gain but it’s hard to say if that is truly caused by the drug or the fact that I am in menopause (had surgery due to large masses that just turned out to be benign Cysts). The sun sensitivity and skin changes are a lot less, and the Joint discomfort is still there but more chronic in nature and less intense. Nothing a little stroll can’t Loosen up.

In my opinion as crappy as this disease is, the treatments are far less horrible than for other cancers and more and more targeted therapies are being researched every day. If you want to chat more or if your daughter has any questions feel free to message me. I am happy to discuss more.

Zelboraf was the first Treatment I was put on back in 2011. It saved my life. Within 3 months I saw a 90% reduction in disease burden. A palpable lump in my abdomen disappeared in 2 weeks. I was taken off of it not because of side effects but because my oncologist wanted to switch me to something that would have potential to have longer lasting effects (single BRAF inhibitor treatment has a median time to disease progression of about 7 months as I have been told). With that said the side effects I had were extreme sun/light sensitivity (I got 2nd degree burns on my knuckles and the side of my face while driving in a car on a sunny day…that was fixed with lots of sunscreen and driving gloves). Lactose intolerance which was remedied with lactaid before dairy. Migratory joint pain: one day my elbow would hurt, the next my knee. Some days no joint pain. Rough skin/hyperkeratosis/and uncomfortable calluses on hands and feet all managed with Ceravie Lotion and urea cream and careful foot care. Erythema nodosa (painful lumps of inflamed fat cells under the skin) those were really only painful to touch and most of the discomfort went away after a couple of days and the lumps disappear after about a weeks time. Now all of these side Effects sound like a lot but they really can be well managed and I still went to work and exercised and went on vacation. Bonuses of BRAF: 90% reduction of disease in 3months. That was reason enough for me. Extra bonuses: body hair loss but significant growth of nails and head hair..not kidding.

After the zelboraf I went through lots of other treatments including proton beam radiation to my brain mets And the immunotherapies. each one I had a fair response to but the anti-pd1 trial drug just took too long I think and things got a little too worrisome for my oncologist to let it ride. So now I am in a BRAF MEK inhibitor trial and I have been for over 2 years now (there is one combination that has already been FDA approved I think) and I have seen the reduction of my disease to where it is almost non-existent. There are side effects…a big one being fatigue and weight gain but it’s hard to say if that is truly caused by the drug or the fact that I am in menopause (had surgery due to large masses that just turned out to be benign Cysts). The sun sensitivity and skin changes are a lot less, and the Joint discomfort is still there but more chronic in nature and less intense. Nothing a little stroll can’t Loosen up.

In my opinion as crappy as this disease is, the treatments are far less horrible than for other cancers and more and more targeted therapies are being researched every day. If you want to chat more or if your daughter has any questions feel free to message me. I am happy to discuss more.

Zelboraf was the first Treatment I was put on back in 2011. It saved my life. Within 3 months I saw a 90% reduction in disease burden. A palpable lump in my abdomen disappeared in 2 weeks. I was taken off of it not because of side effects but because my oncologist wanted to switch me to something that would have potential to have longer lasting effects (single BRAF inhibitor treatment has a median time to disease progression of about 7 months as I have been told). With that said the side effects I had were extreme sun/light sensitivity (I got 2nd degree burns on my knuckles and the side of my face while driving in a car on a sunny day…that was fixed with lots of sunscreen and driving gloves). Lactose intolerance which was remedied with lactaid before dairy. Migratory joint pain: one day my elbow would hurt, the next my knee. Some days no joint pain. Rough skin/hyperkeratosis/and uncomfortable calluses on hands and feet all managed with Ceravie Lotion and urea cream and careful foot care. Erythema nodosa (painful lumps of inflamed fat cells under the skin) those were really only painful to touch and most of the discomfort went away after a couple of days and the lumps disappear after about a weeks time. Now all of these side Effects sound like a lot but they really can be well managed and I still went to work and exercised and went on vacation. Bonuses of BRAF: 90% reduction of disease in 3months. That was reason enough for me. Extra bonuses: body hair loss but significant growth of nails and head hair..not kidding.

After the zelboraf I went through lots of other treatments including proton beam radiation to my brain mets And the immunotherapies. each one I had a fair response to but the anti-pd1 trial drug just took too long I think and things got a little too worrisome for my oncologist to let it ride. So now I am in a BRAF MEK inhibitor trial and I have been for over 2 years now (there is one combination that has already been FDA approved I think) and I have seen the reduction of my disease to where it is almost non-existent. There are side effects…a big one being fatigue and weight gain but it’s hard to say if that is truly caused by the drug or the fact that I am in menopause (had surgery due to large masses that just turned out to be benign Cysts). The sun sensitivity and skin changes are a lot less, and the Joint discomfort is still there but more chronic in nature and less intense. Nothing a little stroll can’t Loosen up.

In my opinion as crappy as this disease is, the treatments are far less horrible than for other cancers and more and more targeted therapies are being researched every day. If you want to chat more or if your daughter has any questions feel free to message me. I am happy to discuss more.