› Forums › General Melanoma Community › Zelboraf patients…any sunscreen recommendations?
- This topic has 33 replies, 6 voices, and was last updated 12 years, 10 months ago by
Richard_K.
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- June 23, 2012 at 4:38 am
The photosensitivity on Zel is no joke! My family and I attended a local annual parade recently…I had on long sleeves, pants, shoes, a scarf covering my head with a hat, sun glasses and sun screen (UVP 50) on my face, lips and ear lobes (the only parts exposed) and sat in the shade. But to no avail I still managed to burn, blistering all that was exposed. I have even burned during my brief work commute (and I wear sunscreen diligently). Anytime I am in the sun within 5 minutes I feel an acid-like burn.
The photosensitivity on Zel is no joke! My family and I attended a local annual parade recently…I had on long sleeves, pants, shoes, a scarf covering my head with a hat, sun glasses and sun screen (UVP 50) on my face, lips and ear lobes (the only parts exposed) and sat in the shade. But to no avail I still managed to burn, blistering all that was exposed. I have even burned during my brief work commute (and I wear sunscreen diligently). Anytime I am in the sun within 5 minutes I feel an acid-like burn.
What has worked or helped for other folks on Zel? My hubby had a special UV protective tint applied to our vehicle windows, I have purchased some UVP clothing…but I refuse to stay inside and not enjoy summer time with my family!
I would love to hear from others going through this.
Best,
Amy
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- June 24, 2012 at 3:26 am
I also refuse to stay indoors while I’m able to go out. I have yet to cover myself 100% when staying out for long periods of time. Today it was about a 2″ square on my wrist. Last weekend it was small spots on both thumbs that the 1/4″ tall blisters subsided two days ago. We need to invent some kind of scanner that tells the spots we miss with lotion..ha. I’ve been on zel 9 months and still havn’ t learned.Bruce
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- June 24, 2012 at 3:26 am
I also refuse to stay indoors while I’m able to go out. I have yet to cover myself 100% when staying out for long periods of time. Today it was about a 2″ square on my wrist. Last weekend it was small spots on both thumbs that the 1/4″ tall blisters subsided two days ago. We need to invent some kind of scanner that tells the spots we miss with lotion..ha. I’ve been on zel 9 months and still havn’ t learned.Bruce
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- June 24, 2012 at 3:26 am
I also refuse to stay indoors while I’m able to go out. I have yet to cover myself 100% when staying out for long periods of time. Today it was about a 2″ square on my wrist. Last weekend it was small spots on both thumbs that the 1/4″ tall blisters subsided two days ago. We need to invent some kind of scanner that tells the spots we miss with lotion..ha. I’ve been on zel 9 months and still havn’ t learned.Bruce
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- June 24, 2012 at 2:28 pm
Amy
So sorry to hear about your sun problems; it sure sounds as if you are hypersensitive to the photosensitivity side effects. It also sounds as if the only real problem is the areas where you need to use sunscreen as opposed to sun-protective clothing.
In order to not violate the MRF “Terms of Use” policy, I will e-mail you directly with the name of the product I use. It’s an SPF 55 broad spectrum sunscreen that’s available over the counter, doesn’t feel oily or greasy after it’s on and has no real odor. Don’t forget, it takes some time for the chemicals to establish and start the protection. If you go right out into the sun after applying, you will have no to minimum protection for the first 20-30 minutes.
Dick
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- June 24, 2012 at 2:28 pm
Amy
So sorry to hear about your sun problems; it sure sounds as if you are hypersensitive to the photosensitivity side effects. It also sounds as if the only real problem is the areas where you need to use sunscreen as opposed to sun-protective clothing.
In order to not violate the MRF “Terms of Use” policy, I will e-mail you directly with the name of the product I use. It’s an SPF 55 broad spectrum sunscreen that’s available over the counter, doesn’t feel oily or greasy after it’s on and has no real odor. Don’t forget, it takes some time for the chemicals to establish and start the protection. If you go right out into the sun after applying, you will have no to minimum protection for the first 20-30 minutes.
Dick
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- June 24, 2012 at 2:28 pm
Amy
So sorry to hear about your sun problems; it sure sounds as if you are hypersensitive to the photosensitivity side effects. It also sounds as if the only real problem is the areas where you need to use sunscreen as opposed to sun-protective clothing.
In order to not violate the MRF “Terms of Use” policy, I will e-mail you directly with the name of the product I use. It’s an SPF 55 broad spectrum sunscreen that’s available over the counter, doesn’t feel oily or greasy after it’s on and has no real odor. Don’t forget, it takes some time for the chemicals to establish and start the protection. If you go right out into the sun after applying, you will have no to minimum protection for the first 20-30 minutes.
Dick
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- June 25, 2012 at 12:51 pm
Hi,
I remember how bad it was when I was on zelboraf. My lips were a big one for me, kepts lip sunblock with me all the time. I bought the light uv protection clothing and tried to find a flattering hat(tried is the word there ha). BUt like you I still missed spots and even with protection found being out in full sun from 10-2 for more than 5 minutes standing still caused me pain and i had to find shade. I did try to plan my outside time around earlier or later hours so I could enjoy being outside without worrying about the burn so much. Good luck!
laurie from maine
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- June 25, 2012 at 12:51 pm
Hi,
I remember how bad it was when I was on zelboraf. My lips were a big one for me, kepts lip sunblock with me all the time. I bought the light uv protection clothing and tried to find a flattering hat(tried is the word there ha). BUt like you I still missed spots and even with protection found being out in full sun from 10-2 for more than 5 minutes standing still caused me pain and i had to find shade. I did try to plan my outside time around earlier or later hours so I could enjoy being outside without worrying about the burn so much. Good luck!
laurie from maine
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- June 25, 2012 at 12:51 pm
Hi,
I remember how bad it was when I was on zelboraf. My lips were a big one for me, kepts lip sunblock with me all the time. I bought the light uv protection clothing and tried to find a flattering hat(tried is the word there ha). BUt like you I still missed spots and even with protection found being out in full sun from 10-2 for more than 5 minutes standing still caused me pain and i had to find shade. I did try to plan my outside time around earlier or later hours so I could enjoy being outside without worrying about the burn so much. Good luck!
laurie from maine
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- June 27, 2012 at 10:31 pm
Janner
Good point, so here goes. The sunscreen I use is a Johnson & Johnson product, “Aveeno”, “Continuous Protection Sunblock Lotion”, SPF 55. Don’t forget in order to get the maximum protection it needs to be applied prior to direct sun exposure and periodically reapplied.
From a disclosure point of view, I am a retired accountant from an industrial manufacturing company; no ties to Johnson & Johnson.
Dick
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- June 27, 2012 at 10:31 pm
Janner
Good point, so here goes. The sunscreen I use is a Johnson & Johnson product, “Aveeno”, “Continuous Protection Sunblock Lotion”, SPF 55. Don’t forget in order to get the maximum protection it needs to be applied prior to direct sun exposure and periodically reapplied.
From a disclosure point of view, I am a retired accountant from an industrial manufacturing company; no ties to Johnson & Johnson.
Dick
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- June 27, 2012 at 10:31 pm
Janner
Good point, so here goes. The sunscreen I use is a Johnson & Johnson product, “Aveeno”, “Continuous Protection Sunblock Lotion”, SPF 55. Don’t forget in order to get the maximum protection it needs to be applied prior to direct sun exposure and periodically reapplied.
From a disclosure point of view, I am a retired accountant from an industrial manufacturing company; no ties to Johnson & Johnson.
Dick
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