17 replies to this topic

[0vercast]

I'm hearing people say that those taking Gleevec should avoid the sun.  What exactly happens if you don't?  Do you get rashes, burn more easily, or get dizzy or fatigued?  I'm preparing for the upcoming bass fishing season.  I am accustomed to getting a lot of sun in the summer, so I'm wondering what I can expect this year.

Thanks, Joe

[chriskuo]

Many people get very red easily and rashes may proliferate.

Covering arms and legs and using sun screen on the face are good precautions.

Not everybody becomes hypersensitive to sun, but it is very common.

Be careful with small doses of exposure until you can gauge your response.

[Rissa]

A couple of weeks ago I went to my daughter's soccer game and I spent an hour out in the sun and ended up with a red face and slightly red arms.  That's unusual for me.  I've always been able to spend time out in the sun without sunblock and just get tanned.  Last summer I did use sunblock because of the warnings about gleevec and sun exposure, but I didn't think spending just one hour outside would make my face so red. 

Rissa

[momruns]

I love the sun but I respect it.  I just did a 14 day cruise and was in the sun a lot and got very tan.  I personally see no difference from before Gleevec and now.  I guess was are all different when it comes to our side effects.  You will see with some it is fatigue, some weight gain, some GI issues and I guess some the sun.  We trout fish up here in NW Pa and I love to be on the creek on a nice sunny day but here it has been a cold and rainy start to the season so I guess most of my skin is covered.  Enjoy the fishing.

Loreta

[Marnie]

When on Gleevec (and also now on Sprycel) I get a sunburn just thinking about the sun.  I don't go anywhere without sunscreen, a long-sleeved shirt, and a hat.

[pamsouth]

My skin is an olive color and it has always been hard for me to get a sun burn or skin problems, so I never worried about being in the sun.  However a few years ago we went to the beach and when I came back, I had huge sun spots on my face and upper part of body.  I went to a skin doctor and she said it may not go away.  Thankfully with time most of the sun spots have faded.  I went on gleevec in 2005 so I am assuming the sun allergy is from the gleevec.  Might mention my cheeks and my chest would be beat red year around.  My massage therapist told me to stay out of the hot tub and to take warm showers and cool it down, as the hot water constricts the blood vessels and makes the blood pressure go up.  I took her advice and the neck and face look more normal and I don't get those hot flashes anymore.  (I am 64 years) I really do think a lot of it was from the hot tub and hot showers and me having high blood pressure, plus the medicines i take.  All my doctor said about the beat red chest, neck and face was I am afraid that is your leukemia can't do anything about.  But I swear once I stayed out of the hot tube and cooled the shower off that 80 % of the problem was cured, oh and stay out of the sun.

Pamsouth.

[Taylor]

My skin is fairly olive with a bit of ruddiness (Italian mixed with a dash of Native American a few generations back).  Before Tasigna, I either tanned or had a slight burn and then tanned the next day except in the most intense cases--without sunscreen or just a light layer of it. 

Last year I discovered that the mid-April sun in Oklahoma (not that hot or intense) for about three hours gave me a total burn that lasted a couple of days.  That was my first post-Tasigna sun experience.  I now put on some decent sunblock and that seems to help me.  I eventually get the tan but I don't burn.

[CallMeLucky]

Gleevec has made it so I sun burn very easily.  The first time I noticed it I was sitting outside having lunch on an April day, not that hot out, was one of the first nice days after the winter.  I was wearing a t-shirt and sitting under an umbrella, most of my body was covered but one arm was exposed to sun.  Within about 20 minutes I had a nasty burn on my arm.  Now when I go out in sun I wear sunblock.  SPF 50 is what I try to use and seems to do the trick.  With sufficient sun block I don't have that much of a problem.  Been able to do vacations, beach, amusement parks etc with no issue.  but if I forget the sun block, forget it, I'm screwed.  I also picked up some SPF shirts which I find good for those days when I am going to be out in sun for long periods of time.

[hannibellemo]

Taylor,

I also have olive skin and until CML I'd kept a tan all year round. It is really difficult to get used to my light olive skin now. I even have little round depigmented areas on my skin that never take a tan anymore. <Sigh>

Pat

[pamsouth]

Yea Hannibellemo,  I also have those round depigmented areas.  Before CML/TKI, I always had the most beautiful skin took after my mother who is part Jewish.  When she died at 84 years, hardly a wrinkle in her face, soft as baby skin. 

PamSouth

[Pin]

Burn-o-rama is what happens to me - I used to have olive skin and would tan easily in the sun, now I am quite pale and have to be super-careful to wear sunscreen anywhere exposed to the sun or I burn very easily. When I do get a sunburn, it turns bright red, hangs around for a few days and then disappears.

[0vercast]

You'll want to try online.  I was looking around earlier for some light clothing for the boat.  Googling 'SPF shirts and clothing' produced these.

http://www.coolibar.com/

http://www.spfstore....-Shirts-s/1.htm

http://www.sierratra...post.com/s~upf/

http://www.rei.com/s...uery=spf shirts

I like these.  I'll probably get a couple.

http://www.amazon.co...t/dp/B0028BJ8BG

There's many more, but many are not cheap.

[CallMeLucky]

I usually shop Amazon.

http://www.amazon.co...fix=spf,aps,159

[Lizzybee]

When I went to the beach last fall, I burned fast and bad, and it took months to heal.

[Susan61]

Hi:  Use a good sunscreen I guess.  I know they told me no Sun or Grapefruit. on Gleevec.  I miss my Grapefruit, but was never one for the sun.  I am extremely Fair Skinned, and would always burn and peel so bad.  I have avoided the sun for years, but thats probably why I am on Vitamin D supplements.  You have to be careful.  They say the sunrays are much stronger now than they used to be.  I do not know if thats true.  Be Careful.

[pamsouth]

Wow I never knew they had SPF clothing.  I will be sure and order a couple of shirts.

thanks for the tip.

PamSouth