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#1 CallMeLucky

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Posted 02 May 2011 - 03:00 PM

I started taking Gleevec last July, so I guess it wasn't really in my skin yet.  I heard people say sun was an issue, but didn't seem like it was going to be an issue for me.  Well yesterday we went to lunch and sat outside, I was under an umbrella, but part of my right arm and the right side of my face had sun exposure.  After sitting there for a half hour or so I got up and walked to other side of table and everyone just looked at me.  My wife said "your arm and face are all burned".  I got a nasty sun burn in a short amount of time, bright red with one part looking almost a little purple.  Looks like I will be buying a lot of sun screen!


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#2 janekaye

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Posted 02 May 2011 - 03:11 PM

Unfortunately I had the same issue on Gleevec - still have it now on Sprycel.  We just returned from Turks and Caicos, and even with the most extensive "coverage" I could apply, I still had huge red, splotchy areas on my back and arms.  And I've always been someone who gets very dark.  I just try to be very careful and watch my time outside.  We live on the water and have a pool and a boat, so I'm constantly aware of wearing a hat, etc.  Just spray that 30+ sunscreen on and you'll be fine.

Good luck!

-janekaye



#3 HeatherZ

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Posted 02 May 2011 - 03:58 PM

I started G last April and didn't seem to have any issues with the sun last summer either.  Yesterday I was at a track meet all afternoon with my son and got sunburn on my nose and cheeks.  It was not really a sunny day; overcast with occasional drizzle and was a little chilly.  I guess I am also starting to notice the sunburn issues others have referred too.  Looks like I'll be joining you on the super sun screen boat Lucky!



#4 Taylor

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Posted 03 May 2011 - 10:30 AM

Hmm, I thought I replied yesterday but I don't see it.  Anyway, I hear you on this one.  I never saw sunburn on my Tasigna side effects list.  I've got olive skin with a little bit of ruddiness (Italian and a little bit Native American) and usually just tan, but I was working outside with my dad in the morning in early April, and with just four hours of exposure I had a burn that lasted for days.  Weird.  Guess I better stock up on some sun blocker.



#5 janner25

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Posted 03 May 2011 - 11:59 AM

Sorry Lucky that you had to join the group!!!!  I am also finding the burn lasting much longer!

Sunscreen is now applied daily .  And I'm trying to find a non-slimy one or one that doesn't make you look greasy.  Even tried to neutrogena one...still greasy.  I'm happy to take suggestions...

No more sun goddess for me...but hoping applying sunblock will allow me to sit on the beach this summer...



#6 VickiW

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Posted 03 May 2011 - 12:12 PM

Yep, me too when I was Gleevec  Didn't have much of a problem first year (started in March) but the next year I couldn't go out in the sun at all!  I had to do my gardening in the early morning and just before dark.  Otherwise, if I was outside too long, even in the shade, I would start getting physically ill.  I am now on Sprycel and going into my third summer.  First one I was still cautious (switched in March) but last year I still burnt easier but nothing like when I was Gleevec.  I think all of these mess with your skin cells but Gleevec does seem to be the worst. 

Just before I switched to Sprycel I even started losing pigment in my skin (unusual but listed in the Gleevec paperwork).  It stopped when I switched but now I am stuck with wierd white "freckles" on my arms

My only advice?  Long sleeves and large hats.

hugs and prayers, Vicki


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#7 MACELPatient

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Posted 03 May 2011 - 02:24 PM

Yup.  I noticed it back in early April when I started going outside to do yard work.  I wonder if the sensitivty is heightened the longer you are on the medicine.



#8 VickiW

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Posted 03 May 2011 - 05:09 PM

Billie;

yep, I lost the pigment in my hair from Gleevec too but I was afraid to look just how bad so I just kept dying it till I was switched to Sprycel and it stopped falling out.  Finally let it grow out and I had went from light red head with soft, fine hair to course, ash blond, that is what isn't snow white .  Why is white hair only distinguished on men????


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#9 jrsboo

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Posted 03 May 2011 - 11:43 PM

Dear Janner,

Funny you should ask, just got back from Dermotologist (horrid yeast infections everywhere, soap burns, bad bad bad).  And he gave me this lovely Sunscreen for my face: Cetaphil UVA/UVB Defense, SPF 50.  Feels great on face!!!!  Not greasy at all.

Also gave me Neutrogena Ultra Sheer Dry Touch Sunblock SPF 55 for rest of body.

Luckily (?) I live in Pacific Northwest, we don't see much sun, but it came out on Sunday, I sat out for an hour or so, and face was bright red for two days.

Caroline



#10 Goldfinger

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Posted 05 May 2011 - 12:39 AM

What is it about taking Gleevec that makes the sun an issue in the first place? I can recall them telling me I am very susceptible to skin cancer now. It's always been very easy for me to get a tan- even after one day outside. Even sun blockers don't seem to help any but I have no  intention of staying inside just because I may get skin cancer.

GF



#11 GerryL

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Posted 05 May 2011 - 01:42 AM

Gleevec may make skin more susceptibe to sunburn by inhition of KIT signaling in Melanocytes (Melacocytes produce the pigment in the skin) which results in a loss of pigment in the skin.



#12 Trey

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Posted 05 May 2011 - 09:29 AM

As with many side effects issues, this does not affect all of us the same way.  I have not been any more likely to sunburn, but when I get very tanned on the arms, I have white spots where I did not tan, mixed with the tanned skin -- sort of like a reverse measles look with white spots in the brown skin.

Gerry -- nice response.



#13 Lynne D

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Posted 05 May 2011 - 05:14 PM

Hey there. I used to be a really nice Italian shade of olive, never burned. Now I am ghost white and burn in minutes. I never used to burn. Even with suntan lotions I can't really get a tan. So it took my pigment away. Grrr


Lynne Dagata

ldagata65@gmail.com

 

"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins


#14 GerryL

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Posted 05 May 2011 - 06:33 PM

Thanks Trey - just don't ask me for more information on Melacocytes I think my brain would go into meltdown. 



#15 VickiW

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Posted 06 May 2011 - 07:19 PM

Yep, me too.  The Gleevec started causing some serious loss of pigment on my arms too which thankfully stopped spreading when I switched to Sprycel but I am now left with some really cute white "freckles" which I assume are as permanent as my white hair

The only thing I miss about Gleevec is my cholesterol counts.  My family has genetically high cholesterol (huge history of heart disease/death) but when I was on Gleevec I could eat anything I wanted and still have the best total cholesterol I have ever had (187).  Within a year of switching to Sprycel it jumped back above 230!  Through a LOT of oatmeal and limiting all the bad (aka good tasting)stuff I have it back down to 212, sigh.


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16





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