› Forums › General Melanoma Community › Very sun sensitive; BRAF/MEK trial 28 months stage IV
- This topic has 18 replies, 4 voices, and was last updated 12 years, 3 months ago by
mbaelaporte.
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- April 14, 2013 at 9:32 am
I love to ride my bike and hike…again. I cover myself, put on SP 70, but come back sunburned in the face, and my nose skin peels like a snake. What gives? I do live at almost 7,000 feet in Colorado with more UVs, but still this didn’t happen before to this extent.I love to ride my bike and hike…again. I cover myself, put on SP 70, but come back sunburned in the face, and my nose skin peels like a snake. What gives? I do live at almost 7,000 feet in Colorado with more UVs, but still this didn’t happen before to this extent.
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- April 14, 2013 at 12:44 pm
Hi John,I love to be outdoors as well, but I have not burned in years. A dermatologist once told me that the goal is to have the same skin tone all year. He said, “If you get red, don’t blame your sunblock, it’s your fault. Wear a shirt.” Yes, it sounds tough, but he was absolutely right. I now where a bucket hat everywhere and there are plenty of great shirts from rei, Patagonia, etc. Be safe. Maybe bike at sunrise/sunset since you need to wear a helmet and the bucket hat is not realistic unless you are just hiking.
Brendan
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- April 14, 2013 at 12:44 pm
Hi John,I love to be outdoors as well, but I have not burned in years. A dermatologist once told me that the goal is to have the same skin tone all year. He said, “If you get red, don’t blame your sunblock, it’s your fault. Wear a shirt.” Yes, it sounds tough, but he was absolutely right. I now where a bucket hat everywhere and there are plenty of great shirts from rei, Patagonia, etc. Be safe. Maybe bike at sunrise/sunset since you need to wear a helmet and the bucket hat is not realistic unless you are just hiking.
Brendan
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- April 14, 2013 at 12:44 pm
Hi John,I love to be outdoors as well, but I have not burned in years. A dermatologist once told me that the goal is to have the same skin tone all year. He said, “If you get red, don’t blame your sunblock, it’s your fault. Wear a shirt.” Yes, it sounds tough, but he was absolutely right. I now where a bucket hat everywhere and there are plenty of great shirts from rei, Patagonia, etc. Be safe. Maybe bike at sunrise/sunset since you need to wear a helmet and the bucket hat is not realistic unless you are just hiking.
Brendan
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- April 14, 2013 at 3:58 pm
Hi John,
Great to hear from you! I'm now on my 24th month on the program and all is good so far. Last month I was told the protocol for us old timers was modified to scans every 12 weeks. I'm sure you were told the same. That 8 week schedule was getting old….
I feel for you re the sun sensitivity. I also tend to burn more than before the drugs (especially when I forget to take a hat to protect my bald pate), but there is alot more atmosphere between the sun and me where I live. We did go on a cruise to the Amazon last year, and situated as we were right on the equator, I managed to burn myself in nothing flat even through my hat and clothing.
Best wishes,
Harry
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- April 14, 2013 at 3:58 pm
Hi John,
Great to hear from you! I'm now on my 24th month on the program and all is good so far. Last month I was told the protocol for us old timers was modified to scans every 12 weeks. I'm sure you were told the same. That 8 week schedule was getting old….
I feel for you re the sun sensitivity. I also tend to burn more than before the drugs (especially when I forget to take a hat to protect my bald pate), but there is alot more atmosphere between the sun and me where I live. We did go on a cruise to the Amazon last year, and situated as we were right on the equator, I managed to burn myself in nothing flat even through my hat and clothing.
Best wishes,
Harry
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- April 14, 2013 at 3:58 pm
Hi John,
Great to hear from you! I'm now on my 24th month on the program and all is good so far. Last month I was told the protocol for us old timers was modified to scans every 12 weeks. I'm sure you were told the same. That 8 week schedule was getting old….
I feel for you re the sun sensitivity. I also tend to burn more than before the drugs (especially when I forget to take a hat to protect my bald pate), but there is alot more atmosphere between the sun and me where I live. We did go on a cruise to the Amazon last year, and situated as we were right on the equator, I managed to burn myself in nothing flat even through my hat and clothing.
Best wishes,
Harry
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- April 15, 2013 at 12:48 am
Hi John,
Is photosensitivity a side effect with your BRAF drug as it is with Zel?
Its interesting to read this as photosensitivity is not one of my side effects. I do have the joint pain ( dose-reduction to 3/3), some skin tags, loss of body hair, and fatigue. Drove about 30 minutes today in the sun with my jean skirt exposing a fair amount of leg–nothing. No rash either. Maybe I used up all my rashes on my first ipi treatment and IL-2. Not complaining, just wondering.
Take care of yourself,
Karen -
- April 15, 2013 at 12:48 am
Hi John,
Is photosensitivity a side effect with your BRAF drug as it is with Zel?
Its interesting to read this as photosensitivity is not one of my side effects. I do have the joint pain ( dose-reduction to 3/3), some skin tags, loss of body hair, and fatigue. Drove about 30 minutes today in the sun with my jean skirt exposing a fair amount of leg–nothing. No rash either. Maybe I used up all my rashes on my first ipi treatment and IL-2. Not complaining, just wondering.
Take care of yourself,
Karen -
- April 15, 2013 at 1:08 am
I don't know about the MEK component but w / BRAF I had to be careful from the reflection off cars / true shade only prevention
I remember trying to get through a meal at a restaurant dabbing myself w / aloe leaves trying to stem the pain of a burn; the burn was more intense & on fire than I had ever experienced before
and some anecdotal : I have "remarkable" tumor presence and the BRAF knocked them to almost nonexistence within 4 days & my doc referred to me as Mr. Remission at about 5 month into therapy ( after scans )
the disease did a workarond & was back within say 8 mos. of starting the BRAF
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- April 15, 2013 at 1:08 am
I don't know about the MEK component but w / BRAF I had to be careful from the reflection off cars / true shade only prevention
I remember trying to get through a meal at a restaurant dabbing myself w / aloe leaves trying to stem the pain of a burn; the burn was more intense & on fire than I had ever experienced before
and some anecdotal : I have "remarkable" tumor presence and the BRAF knocked them to almost nonexistence within 4 days & my doc referred to me as Mr. Remission at about 5 month into therapy ( after scans )
the disease did a workarond & was back within say 8 mos. of starting the BRAF
-
- April 15, 2013 at 1:08 am
I don't know about the MEK component but w / BRAF I had to be careful from the reflection off cars / true shade only prevention
I remember trying to get through a meal at a restaurant dabbing myself w / aloe leaves trying to stem the pain of a burn; the burn was more intense & on fire than I had ever experienced before
and some anecdotal : I have "remarkable" tumor presence and the BRAF knocked them to almost nonexistence within 4 days & my doc referred to me as Mr. Remission at about 5 month into therapy ( after scans )
the disease did a workarond & was back within say 8 mos. of starting the BRAF
-
- April 15, 2013 at 12:48 am
Hi John,
Is photosensitivity a side effect with your BRAF drug as it is with Zel?
Its interesting to read this as photosensitivity is not one of my side effects. I do have the joint pain ( dose-reduction to 3/3), some skin tags, loss of body hair, and fatigue. Drove about 30 minutes today in the sun with my jean skirt exposing a fair amount of leg–nothing. No rash either. Maybe I used up all my rashes on my first ipi treatment and IL-2. Not complaining, just wondering.
Take care of yourself,
Karen
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