sun sensitivity

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eweb
eweb Member Posts: 14
edited March 2014 in Colorectal Cancer #1
Hi. Hope someone can help with this. I finished 5FU/Leu about 2 years. During treatment I experienced severely dry skin at the beginning and then sported a lovely tan. Now, no tan, but despite being a sunblock maniac, my face becomes very sore when I am outside for any prolonged time (longer than 20 minutes). I wear a hat when I can, but I still get a burning feeling. I have tried different sunblocks and none of them seem to work. Any suggestions?
Thanks,
Ellen

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  • foxy
    foxy Member Posts: 188 Member
    #2
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    Hi Ellen, I am way out of date, as I had the same chemo in 1994. Just thought I would let you know that my Specialist told me to never let sun light on my skin, during this chemo. We live at the top of NZ down under and summer heat and humidity is great. I ended up with very itchy skin and it was dry and horrible. This has been a problem ever since, but what the heck I am still alive and kicking, with no chemo since Jan 1994. I had 5fu once a week for 52 weeks, which is not done now, but it certainly worked for me. I now have the skin of a very old woman, but I am heading that way anyway. the very best of luck to you.

    Virginia.
  • spok5
    spok5 Member Posts: 18
    #3
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    Hi eweb- I am surprised that you're experiencing this side effect 2 years after finishing treatment. I had the same thing happen while on chemo. I sat outside in the hot sun to watch a track meet and boy did I pay for it. It got very swollen and hurt all over where my skin was bare. Although I didn't have a sun burn I felt like I did. My doctor said- STAY OUT OF THE SUN! The info I got with my chemo ( I took oral Xeloda instead of the pump and it was sent to my house so I got the pages of medical stuff with it)said that you should not even sit by a sunny window while you are taking the drug. Even though you are 2 years out maybe call your doctor and ask for advice.
  • jsabol
    jsabol Member Posts: 1,145 Member
    #4
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    Hi Ellen,
    Thought I would chime in, even though my sun reactions are not as severe. I spent a lot of time puttering in my garden when I was receiving chemo (5FU and leuco, too, also finished 2 years ago!) I was instucted to be very careful in the sun, and even bought sun proof outdoor clothing with a high SPF factor. I wore long sleeves and long pants and a big hat all summer. Even with that, I got very brown, but unevenly (not very attractive!), the backs of my hands were nearly purple, and the surgery to remove my thyroid (unrelated to cancer) that summer has left me with a sort of tan line across my neck.
    I now get what I call a "sun rash" very quickly, but it is better now that I use a skin lotion with sun block in addition to regular sun block. The initial redness does not hurt, and mine fades quickly. I still use my light wieght sunproof shirt a lot.
    I would check with your onc's office, too, for suggestions; or maybe a referral to a dermatologist with post chemo experience? Do you think you may be sensitive to one of the ingredients in the sun block, also?
    Good luck to you; it is really hard to avoid the sun in daylight hours! Judy
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
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    Hey, Ellen
    I burnt the top of my head once during chemo for the Breast Cancer...2 days later was sitting being infused...my onc said 'What part of STAY OUT OF THE SUN did you NOT understand?????'
    I now wear a hat, and if I HAVE to be out in the sun, I have sheer long sleeves blouses, with sunblock on underneath...
    This is part of my new 'normal' I USED to be a sun bunny! Sigh...BUT I am alive and KICKING!!! and NED!!!!!
    Hugs, Kathi
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #6
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    This just goes to show that every person reacts differently to chemo. I had the same 5FU/Leu 4 years ago, then later I had Camptosar and Xeloda. Both times at first I did all the stuff like wearing a hat and long sleeves, etc. but then I discovered that I was not getting sunburned and so I quit and just used sunscreen. I never had those issues with sun sensitivity. However, in my case, the 5FU did some permanent damage to my tear ducts. I still have a very watery right eye all this time later. I am sure it will be for the rest of my life, but if that is the only cancer related problem I have, then I'll take it!
    If I were you I would go see a dermatologist. Your problem may be totally unrelated to the chemo you had such a long time ago.
    Good luck,
    Susan.
  • foxy
    foxy Member Posts: 188 Member
    #7
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    shmurciakova said:

    This just goes to show that every person reacts differently to chemo. I had the same 5FU/Leu 4 years ago, then later I had Camptosar and Xeloda. Both times at first I did all the stuff like wearing a hat and long sleeves, etc. but then I discovered that I was not getting sunburned and so I quit and just used sunscreen. I never had those issues with sun sensitivity. However, in my case, the 5FU did some permanent damage to my tear ducts. I still have a very watery right eye all this time later. I am sure it will be for the rest of my life, but if that is the only cancer related problem I have, then I'll take it!
    If I were you I would go see a dermatologist. Your problem may be totally unrelated to the chemo you had such a long time ago.
    Good luck,
    Susan.

    Hi Susan, just thought I would tell you that I still have a watery left eye after 12 years! Sorry!!
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #8
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    shmurciakova said:

    This just goes to show that every person reacts differently to chemo. I had the same 5FU/Leu 4 years ago, then later I had Camptosar and Xeloda. Both times at first I did all the stuff like wearing a hat and long sleeves, etc. but then I discovered that I was not getting sunburned and so I quit and just used sunscreen. I never had those issues with sun sensitivity. However, in my case, the 5FU did some permanent damage to my tear ducts. I still have a very watery right eye all this time later. I am sure it will be for the rest of my life, but if that is the only cancer related problem I have, then I'll take it!
    If I were you I would go see a dermatologist. Your problem may be totally unrelated to the chemo you had such a long time ago.
    Good luck,
    Susan.

    Hi -

    Yes everyone is different. I'm like Susan. My oncologist did not advise me to stay out of the sun (Xeloda / oxaliplatin / Avastin), but my boss's wife who is an oncology nurse told me that sun could cause huge damage. At first I was careful - although my internet searches did not indicate that these particular drugs tended to cause sun sensitivity. Finally I went to Virginia Beach for 5 days and later to Florida for 5 days. I used sunscreen of course, but I was fine!

    Guess this is just another example of having to listen to your body and respond if it is objecting to something.

    Take care,
    Betsy
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #9
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    Betsydoglover said:

    Hi -

    Yes everyone is different. I'm like Susan. My oncologist did not advise me to stay out of the sun (Xeloda / oxaliplatin / Avastin), but my boss's wife who is an oncology nurse told me that sun could cause huge damage. At first I was careful - although my internet searches did not indicate that these particular drugs tended to cause sun sensitivity. Finally I went to Virginia Beach for 5 days and later to Florida for 5 days. I used sunscreen of course, but I was fine!

    Guess this is just another example of having to listen to your body and respond if it is objecting to something.

    Take care,
    Betsy

    Hi Ellen. As already mentioned the normal advice from oncs. was to keep covered up and avoid direct sun while on chemo. I did 6 months 5fu/leuc. too which I completed 2 years ago. However, even now I do for some strange reason have "sunburn", a bright red rash come up on my right arm every time I get sun exposure. Really crazy 'cos it only effects about 8 inches of skin area just above my right wrist...nowhere else...go figure!
    I also have an ongoing problem with watery eyes and they get very sore. I guess that is still after effects of chemo and in fact my doc. says that this is not unusual. Doc. says that there are many patients he knows that do have long lasting effects even years later. I guess the "poison" for some of us still plays havoc.
    Cheers, Ross n Jen
  • eweb
    eweb Member Posts: 14
    #10
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    Thanks everyone for your input! I should add that the 'tan' during chemo was from my complexion changing, not exposure to the sun. Also, I was one of the odd ones who not only lost most of their hair, but eyebrows and lashes too. I'll look into seeing a specialist and I'm trying lotion.
    Thanks again,
    Ellen

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