Looks like I'm allergic to sunlight! I've been fighting a painful
rash for over two months and last week went to a Dermatologist/Oncologist at
Johns Hopkins. He confirmed what my PCP has said all along. The Tasigna is
causing me to be photosensitive. I've been wearing SPF clothing, sunscreen,
etc. but still get extremely burned if out in the sun. For now the only option
is to stay out of sunlight. He did give me a referral for phototherapy
treatments, does anyone has any experience with this? It almost sounds to me
like voodoo medicine.
Ain't this swell
Started by
WoofWoof
, May 29 2012 02:41 PM
3 replies to this topic
#1
WoofWoof
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Posted 29 May 2012 - 02:41 PM
I have cancer but it doesn't have me
#2
CallMeLucky
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Posted 29 May 2012 - 03:32 PM
Sorry to hear, no experience with that therapy but would be interested in hearing about it. I was out in sun yesterday, had sun block on. I did not burn, but I have been very itchy. This happens whenever I am out in the sun. Hopefully it doesn't get any worse....
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%
#3
Happycat
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Posted 29 May 2012 - 03:33 PM
Only thing I know phototherapy is used for is seasonal affected disorder.
Perhaps you should eat lots of garlic to prove you are not a vampire, lol!
Traci
#4
Guest_billronm_*
Guest_billronm_*
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Posted 29 May 2012 - 03:34 PM
Hi ww,
Sorry about your rash.What kind of sunscreen do you use? I've tried a couple that didn't work at all, or they gave me a rash,(not a bad one like yours) just enough to let me know my skin can't tolerate it. I have all this expensive sunscreen and it's not helping me, Ron just opened the pool Yesterday and I can't go in it until I find a better sunscreen. My skin is sensitive anyway, so Sprycel even kicks it up a notch. I hate the feel of sunscreen too. I just saw a commercial about sunscreen, and I think it was LOREAL they just came out with a lighter feeling sunscreen and it has several different spf numbers. I'm going to try it. I'll let you know how it works. PHOTOSENSITIVITY TREATMENTS. Yeah just what we need, something else to nuke us with even more, if they ask for a lock of your hair run like hell. Why don't we just smear our bodies with mud, and live in caves. Ever since I had that melenoma, and had to have some lymph nodes removed, my doctors all yell at me if I even blush. Good Luck Billie
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