Is anyone on Gleevec NOT adversely affected by sun exposure? Just wondering if that's one of the symptoms I *may* get or one I definitely will. I've got a beach vacation planned for August and wondering if I should cancel it? Thx!
Anyone NOT more sensitive to sun exposure on Gleevec
Started by
Krock41976
, Jul 11 2015 03:08 PM
Sun exposure Gleevec
11 replies to this topic
#2
Krock41976
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Posted 11 July 2015 - 03:12 PM
Sorry for the double post. Please disregard this one.
#3
Marnie
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Posted 11 July 2015 - 04:40 PM
Don't cancel, but be sure to pack a lot of sunscreen and wear a wide-brimmed hat. I burn just THINKING about the sun. But I don't let that stop me from doing what I want to do.
Have fun!
#4
rcase13
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Posted 11 July 2015 - 06:13 PM
I am not on Gleevec but on its cousin Tasigna. I have a lot of issues with the sun and heat. My heart starts racing. No fun!
But I was fine on a recent trip to the beach. Stayed under the umbrella and wore hat with sunscreen. I would run out and play with the boys for 15 minutes at a time.
Don't let it stop you. Get creative and be smart. Have fun!
But I was fine on a recent trip to the beach. Stayed under the umbrella and wore hat with sunscreen. I would run out and play with the boys for 15 minutes at a time.
Don't let it stop you. Get creative and be smart. Have fun!
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg
Cancer Sucks!
#5
chiocchi
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Posted 14 July 2015 - 02:01 PM
DON'T cancel!!! Enjoy the sun with precautions of course:) I just came back from the Jersey shore without any burns. I used 50 SPF ,once applied in morning , then afternoon . And as the others advise,a sun hat does wonders!! Enjoy!!
#6
Krock41976
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Posted 14 July 2015 - 03:35 PM
DON'T cancel!!! Enjoy the sun with precautions of course:) I just came back from the Jersey shore without any burns. I used 50 SPF ,once applied in morning , then afternoon . And as the others advise,a sun hat does wonders!! Enjoy!!
Thanks, chioccho! I'm actually heading to the Jersey shore. Ocean City! Just out of curiosity, did you tan at all or just didn't burn. I'd be happy with not burning, but I wouldn't turn down a tan!
#7
kat73
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Posted 14 July 2015 - 06:46 PM
Krock - I can't tan AT ALL. My default daily color is bluish-gray white, with a little sallowness thrown in. Blends well with the aging bruises. Used to be an English complexion peaches and cream girl. I did discover on a recent week at the beach with grandkids that, although I can't TAN, I CAN BURN. Yet another annoying eccentricity of taking TKI's.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#8
mlk210
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Posted 14 July 2015 - 10:11 PM
I went to Mexico a few weeks ago. I'm on Sprycel and I used the spray sunscreen (80spf) the first day and burned. With that being said, I was in the water a lot and tried to keep reapplying. I went to the gift shop and bought the lotion sunblock. Used that for the rest of my time. My burn healed fast, but it never turned into a tan like it used to before Sprycel. I was pleasantly surprised how much I was out in the sun(even on a catamaran) and I didn't burn anymore after I religiously reapplied the lotion sunblock (50spf).
7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)
8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)
1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)
3/16 .014 after a wk w/o meds
4/16 Started 400mg Gleevec
4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable
#9
hannibellemo
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Posted 15 July 2015 - 03:20 PM
I had no issues with my very short time (9 months) on Gleevec and I went to Belize where it is very hot and humid inland. It's a different story on Sprycel. I have a very low heat tolerance and I no longer tan. I don't know if that is because I use sunscreen on a daily basis or what. I used to get very dark but those days are definitely gone.
Have fun!!
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
#10
jmoorhou
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Posted 16 July 2015 - 12:08 AM
I'm not. 
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#11
chiocchi
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Posted 17 July 2015 - 07:47 PM
DON'T cancel!!! Enjoy the sun with precautions of course:) I just came back from the Jersey shore without any burns. I used 50 SPF ,once applied in morning , then afternoon . And as the others advise,a sun hat does wonders!! Enjoy!!
#12
chiocchi
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Posted 17 July 2015 - 07:49 PM
Brock,I was at Seaside Pk! I get a little tan but have to be real careful not to burn. I'm sure if I got to spend a month there ,I'd be really tanned☺️
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