One of Twelve

Phil64
Phil64 Member Posts: 838 Member
in Colorectal Cancer #1
My first FulFox infusion is nearly done. Yay.

The nurse told me that the 5-FU will make me sensitive to sunlight and prone to sunburn. That was the first I heard of this side-affect. Is this true? She said I should wear long sleve shirts, sweat pants, and 50+ power sun screen on my hands and feet, along with a wide-brim hat. Is this really required? I'm planning a week up north with a pontoon boat and I sure will miss wearing a bathing suit and t-shirts. :-(

May the LORD Bless this day for you and me, and may we be reminded of the extrodinary Love that Jesus has for us. Amen.

Comments

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #2
    That is what they say. I
    That is what they say. I have done 33 rounds of it and never had an issue with sunburn although i was never on a boat all day while in treatment. Be careful and have fun.
  • omrhill
    omrhill Member Posts: 125
    #3
    They told me to be careful
    They told me to be careful in the sun, and I was, but i didn't go to extremes. Never had a sunburn. I wore sunscreen and stayed out of intense sun for long periods of time. The only place I really got a burn was on top of my head, at the part in my hair (no hat)!
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #4
    Sunburn
    It was to some degree, but my chemo was all summer and still continued to work in the yard with short sleeves and shorts. Just put some sun screen on and see how you do the first day. Of course, don't go laying on the beach or anything, but play it by ear. Everyone is different so I'd try it and enjoy.

    Kim
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    #5
    Sunburn
    Take what they say to an extreme, Phil. In March I went out in the sun for several hours and forgot the sunscreen. I ended up with a third degree burn on the left side of my face and my left hand. The sores lingered for a couple of weeks before finally healing and even now my left cheek is sensitive to the touch and my left hand has a purplish tint to it. When I went on the fishing retreat a couple of weeks ago, I did remember to use sunscreen, 45 spf. I still got another third degree burn, this time on the right side. While my face has healed, my right hand still has sores. Now if I'm going out for more than just a couple of minutes, it's 75 spf, long sleeve shirt and gloves. When I ride my bike, there's not a piece of exposed skin showing to the sunlight. Even if I'm out for just a few minutes, I stay in shade as much as possible. Sometimes I think I'm starting to turn vampire!
  • neons356
    neons356 Member Posts: 57 Member
    #6
    It was true for me
    The 5-FU made me very sensitive to sunlight and sunburn. If I were you I'd follow the recommendations.
    PS
    I respect your beliefs. Please respect mine. This is not the place for proseletizing.
  • Coppercent
    Coppercent Member Posts: 158
    #7
    Sunlight
    I was told the same thing to limit my time in the sun and to make sure I was protected very well. I really don't have to worry about it though because since I started chemo treatment a year ago I can't seem to get warm! I am always freezing. It was 90 degrees outside today and people are in tank tops and shorts and I am in long pants and a winter sweater. If I go into an air conditioned restaurant before the meal is complete my teeth are chattering. Not sure if it is the chemo or what but I do get some strange stares. Not sue if it is my bald head or my winter clothing in June in the south! :)
  • steved
    steved Member Posts: 834 Member
    #8
    Genuine issue
    The photosensitivity is a gnuine issue and can be serious for some and not an issue at all for others. Lucky enough to not have it but then again the UK sunburn is hardly an issue! Take it seriously with at lease some decent sunscren but also try it out gradually as you may get away with it- the last thing you want though is the third degree burns described above! Theat will truly ruin your boat trip.

    Agree about the right place for the right stuff- the two things that seem to promote conflict in this forum is people with strong alternative views of treatment pushing them too hard and religion (politics is rightly avoided). Having had some issues on the board recently about the first we don't need one about the latter.

    With full respect to you and your beliefs.

    steve
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #9
    steved said:

    Genuine issue
    The photosensitivity is a gnuine issue and can be serious for some and not an issue at all for others. Lucky enough to not have it but then again the UK sunburn is hardly an issue! Take it seriously with at lease some decent sunscren but also try it out gradually as you may get away with it- the last thing you want though is the third degree burns described above! Theat will truly ruin your boat trip.

    Agree about the right place for the right stuff- the two things that seem to promote conflict in this forum is people with strong alternative views of treatment pushing them too hard and religion (politics is rightly avoided). Having had some issues on the board recently about the first we don't need one about the latter.

    With full respect to you and your beliefs.

    steve

    I was told the same to stay
    I was told the same to stay out of the sun....I used sun screen and had no issue other than the usual blisters I normally get on my lips when they get too much sun. I boat A LOT, I am very fair, blond hair. But, again EVERYONE is different....some people can get a horrible burn just walking to their car in a parking lot. What I found was photosensitivity with my eyes!!! Not only photosensitivity, but during infusions I would be reading a magazine and as the infusion progressed my eyes would get really blurry.
  • dmj101
    dmj101 Member Posts: 527 Member
    #10
    I never experienced any issue with the sun
    Phil... yay.. first one down...
    Don't go overboard... though I don't know where you are... I am in New Jersey and the FolFox last summer gave me no issue with the sun though i was told the same..
    use your normal sun precautions.. a hat.. some sunscreen and see how you make out... before overreacting to the sun.. I know I like the sun.. but for me you'd never know it as I am an spf 50 person and have been since I was 16 and had a horrible case of sunpoisoning.. not that it had anything to do with underage drinking at the shore... lol...
    but seriously.. enjoy what you enjoy and just play it by ear.. just be prepared... be the good boyscout...
    enjoy the pontoon.. wish I could be there... haven't been on one in years.. are you going fishing... or just cruising..
  • ron50
    ron50 Member Posts: 1,723 Member
    #11
    Hi Phil
    I was bad on 5fu and methotrexate.I found I had to wear long sleeved shirts and long pants when I was fishing and apply sunscreen every couple of hours. Even then you always miss a bit and the backs of my hands burned really badly on one fishing trip. Take care ,Ron.
  • danker
    danker Member Posts: 1,276 Member
    #12
    Phil64
    I had 5 weeks of 5-fu with a chemo pump while getting radiation as well. Only side effect was diarrhea. Never heard of sunburn (radiation tended to burn my butt). LOL Used RADIA GEl from Walmart fur my butt.
    Enjoy your pontoon boat.
  • Minnesotagirl
    Minnesotagirl Member Posts: 141
    #13
    Yah ... your first folfox infusion is done
    Phil64,

    Yeah...you have nearly completed the first infusion!!!
    I did have sensitivity to the sun...I broke out in hives when outside and felt ill in the heat. I did not go to the extreme to cover my body like they told you but I did take them seriously with sunscreen and low doses of exposure outside. My eyes became extremely sensitive around the sun as well. I would error on the side of caution if I were you.

    Blessings to you and still enjoy your weekend.

    "Minnesotagirl"
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #14
    Minnesotagirl said:

    Yah ... your first folfox infusion is done
    Phil64,

    Yeah...you have nearly completed the first infusion!!!
    I did have sensitivity to the sun...I broke out in hives when outside and felt ill in the heat. I did not go to the extreme to cover my body like they told you but I did take them seriously with sunscreen and low doses of exposure outside. My eyes became extremely sensitive around the sun as well. I would error on the side of caution if I were you.

    Blessings to you and still enjoy your weekend.

    "Minnesotagirl"

    Hey...me too..my first...aweeeee
    Well lookie there...we are sharing a "first" together! I had my first Folfox on Tuesday and took pump home and got it off today. Wow....this is very different from other stuff I have done...but of course it is. It has made me feel real full. Strange. I refuse to stop eating anything cold. It don't hurt to do cold...just VERY strange feeling...and not comfortable at first but heck...I am not giving up ice cream or soda or ANYTHING I want for that matter so I have found that I ain't..... It's one of those "hurts SOOOO GOOD" feelings and that's ok with me. So far it has been very tolerable. How bout you? What issues it give you? Take care

    Jennie
  • maglets
    maglets Member Posts: 2,576 Member
    #15
    idlehunters said:

    Hey...me too..my first...aweeeee
    Well lookie there...we are sharing a "first" together! I had my first Folfox on Tuesday and took pump home and got it off today. Wow....this is very different from other stuff I have done...but of course it is. It has made me feel real full. Strange. I refuse to stop eating anything cold. It don't hurt to do cold...just VERY strange feeling...and not comfortable at first but heck...I am not giving up ice cream or soda or ANYTHING I want for that matter so I have found that I ain't..... It's one of those "hurts SOOOO GOOD" feelings and that's ok with me. So far it has been very tolerable. How bout you? What issues it give you? Take care

    Jennie

    sun and cold
    haha Jennie....I can't remember what round of oxi I was on when the cold pain super clicked in.....maybe you won't get it......that would be good.

    and maybe this thread goes to show just how differently we all react .....

    me on 5FU just one big burn from the sun....could barely stand in front of a window without frying.....major burn....

    so maybe Phil you won't get that one either....

    ????who knows ....??

    mags
  • Phil64
    Phil64 Member Posts: 838 Member
    #16
    neons356 said:

    It was true for me
    The 5-FU made me very sensitive to sunlight and sunburn. If I were you I'd follow the recommendations.
    PS
    I respect your beliefs. Please respect mine. This is not the place for proseletizing.

    Thank you for the feedback and sorry...
    Neons356, I'm sorry if my references to God and Religion come across as proselytizing. I truly respect all other's views on spirituality. However, I feel like I should be able to freely express my views as well. If there is a rule about this I am sorry that I didn't read it closely. If you can point me in the right direction I'll educate myself and try to comply.

    Again, thank you for the feedback. I will be careful about exposing my skin to sun.
  • Phil64
    Phil64 Member Posts: 838 Member
    #17
    Different responses...
    I guess this should not be surprising. The doctors and reading have been very consistent in saying that different people have different responses to these drugs. And for me the key take away (thank you all for the feedback) is that I should be careful about exposing myself to the sunlight... I went to my 12 year olds baseball game tonight and I used a hat, long pants, and a golf umbrella to keep out of the sun (and for a portion of the time, out of the rain).

    ps. They won both of there games tonight. :-)

    Thank you all again!

    Good night and good rest to you all.
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #18
    Be careful
    You will turn red as a tomato if you spend more then 2 hours in the sun. Be very careful.

    I love to hike in the mountains. I learned to go very early so I would not turn tomato red again.

    Best Always, mike
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #19
    Everyone reacts differently
    I am very slow to tan, and very slow to burn. I spend a lot of time in Mexico usually. I was super careful at first in Mexico, and then got more lax, and never burnt when I was on FOLFOX. I was still careful on FOLFIRI, especially with my bald head, but after getting no color at all, I tried short times with no sunscreen, and lengthened that and never burnt. But then last summer at home in MN on FOLFIRI, even with sunscreen, I did get a burn one day planting my flowers. Just like some antibiotics can make you very susceptible to burning, but not every time you take them, chemo can too. You don't know how your body will react and need to be careful. Wear sunscreen, and go ahead and wear your shorts and swimsuit, but limit how much time you are exposed to sun - find yourself some shade too.
  • Phil64
    Phil64 Member Posts: 838 Member
    #20
    Kathryn_in_MN said:

    Everyone reacts differently
    I am very slow to tan, and very slow to burn. I spend a lot of time in Mexico usually. I was super careful at first in Mexico, and then got more lax, and never burnt when I was on FOLFOX. I was still careful on FOLFIRI, especially with my bald head, but after getting no color at all, I tried short times with no sunscreen, and lengthened that and never burnt. But then last summer at home in MN on FOLFIRI, even with sunscreen, I did get a burn one day planting my flowers. Just like some antibiotics can make you very susceptible to burning, but not every time you take them, chemo can too. You don't know how your body will react and need to be careful. Wear sunscreen, and go ahead and wear your shorts and swimsuit, but limit how much time you are exposed to sun - find yourself some shade too.

    pontoon canapy
    Thank God for the person that invented the pontoon canopy. :-)

    I will heed the advice of all the experienced people on this board and I will be careful.

    "This is the day that the LORD has made; I will rejoice and be glad in it!"

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