For the first time in weeks, I tried to play golf. It was for a good friends' retirement party. SPF 50 sunscreen, SPF 30 long sleeved shirt, goofy floppy hat, SPF 50 bandana around my neck, looked like a real golfer dude. It was at a very nice private country club and I was playing great golf (39 on the front nine if anyone really cares). After playing three more holes could really feel the affect of the sun so had to quit. Today it's back to prednisone, cold compresses and an uglier then normal looking face. Scales, blotches, runny-seepy stuff, etc. Plus it itches and burns. Oh the things we do to tolerate Tasigna.
Posted 20 July 2012 - 07:09 PM
Wow ! That sounds brutal, but nice score !
Dx'd: 8/2008. Started Gleevec 400 mg 11/08.
Drug break 2011.
Started Tasigna 4/11 450 mg.
Reduction to 300 mg Tasigna 1/2012.
PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)
12/2015 ? slightly detectable at probably less than 0.01% per Mayo Clinic.
4/2016 PCRU. Still at 150 mg Tasigna.
CESSATION: stopped treatment 7/20/2017.
9/6/2017: barely detectable at 0.01%.
12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.)
12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.)
Posted 20 July 2012 - 08:47 PM
On Gleevec went to Florida a few years ago. Was on the beach but put plenty of sunscreen, hat, glasses and all.
Came back with a hideous looking face. Went to a dermatology and she said it may go away in time. It is pretty much gone. If I am out side in the sun I keep a big sunbrello hat and glasses on. Going periodically to a facial therapist. She works wonder for my face and the products I buy from the saloon for my face works wonders. She also give me a shoulder, arm, hands massage. The saloon is called Massage Envy they are through out the U.S. I singed a contract for a year for myself and my husband. Great deals all their therapist are certified and they are open 7 days a week. When I found them I found a little bit of heaven. You might google them and see one of their saloons around you, and maybe they can help you out.
Posted 21 July 2012 - 12:33 AM
I can't resist this one, you cracked me up. Are you going to a Saloon called Massage Envy? You litttle devil! Or is it a Salon called massage envy? Hee Hee Love Billie
Posted 21 July 2012 - 09:46 AM
I seem to crack a lot of people. I'm one of kind, makes the world a little more interesting, huh? Can't stay oh here long, thank goodness, I can get wordy. Getting ready to go to the hair SALOON and have a drink! Did you know at some hair dressers and massage then serve alcohol? A few weeks ago had a 2 hour massage by a male, he did a great job, he was the only one available at that time. He did a good job draping. Nice hands!!
Seems no matter how many times I proofread, there is always a correction to be made. That would be a good job for you to be my editor. I drink to that one. In fact I haven't had my tea yet this morning, so brain is still foggy. Can I believe that on TKI BRAIN FOG?
Got to hurry, wouldn't want to miss my beautification appointment. Wish she could do something about these droop eyelids, that my friend Gleevec gave me.
Love Ya, Hugs xoxo Pam
Posted 21 July 2012 - 03:40 PM
Hi Pam S,
Where is your hair saloon, and massage parlor with only men? I wanna go there. The only stimulation my body gets is when I fall down! Love Billie
Are you sure you're going to the right kind of massage parlor (whoops I mean massage saloon) we had some in Erie but they shut them down. Something about getting naked I think.
Message was edited by: Billie Murawski
Posted 21 July 2012 - 03:46 PM
Hopefully this Oct I will be attending Massage School. Yep I'll be starting my own business, in my home, no restrictions. Will have the time of our lives, yes we will.
Posted 21 July 2012 - 03:50 PM
NAKED!!!! WHOOPEE, There will be a lot of blind people walking around after seeing me naked!!!
Posted 21 July 2012 - 04:15 PM
That is the best belly laugh. Naked, still laughing as I write this. Do you think anyone will be paying us for just a body glimpse.
Really, it's the low lights, the candle scent, exotic music, water fall and plants, that are alluring.
Along with a good sixth sense and a little imagination. NO a lot of imagination. Maybe a glass of wine would help.
Posted 24 July 2012 - 09:00 AM
Great score! Wish I played that well. I get some lucky shots, but a lot of times I'm hacking the ground. It's fun though. Sorry you are suffering every time you go out in the sun. I hope this is a passing side effect for you and not permanent.
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