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#21 steelpony5555

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Posted 22 November 2016 - 10:27 AM

A shart party?????........Oh Hell No.......lol lol lol..... on a better note my sharts have moved on after the 2 months of being a pain in the arse......Now I believe it is back to those little zits on my head that hurt like hell.....

#22 tiredblood

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Posted 22 November 2016 - 11:06 AM

You do a lot of thinking in stop and go traffic-- more stop than go. I was behind a car with a support the Arts tag on it. My first thought was a vanity tag with sharts on it.



#23 Trey

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Posted 24 November 2016 - 09:50 AM

I saw such a license plate several years ago:

http://community.lls...e +plate +shart



#24 kat73

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Posted 24 November 2016 - 04:40 PM

All very funny!  I wondered how I had missed this edifying thread, then I looked at the date.  Really had a pang.  I was into my first month of Gleevec at the time y'all were writing, miserable and scared beyond belief, sicksicksick.  I had not found this site yet and I had nobody.  "Most people tolerate the drug very well.  See you in a few weeks." That's all I had from the onc, and it was just me and the internet.  I feel so sorry for that person from so long ago!


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.


#25 hannibellemo

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Posted 25 November 2016 - 10:18 AM

kat73,

 

Wish you had found us sooner! TKIs were relatively new on the market when I started and I couldn't bring myself to read even the LLS pamphlet on CML (it hadn't been updated to include Gleevec yet), it scared the ever-loving shart out of me! Luckily I found this site within a month after dx and immediately knew I had found kindred souls!

 

We relied an awful lot on humor back then, and Trey and PhilB for facts, just as we do now. Lots of regular posters have moved on, hopefully because they are doing so well they don't need the site any longer, but many pop in now and then to see what's going on or just to give us an update.

 

Don't know where I would have been without all the great people on here. (Oops, starting to hear violins in the background, I'll stop now!)   :lol:


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>


#26 MarCap73

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Posted 26 November 2016 - 09:13 PM

All of you on this site have been what's kept my sanity over the last year!  I have learned more from this site than I have anywhere else.  


Dx: 11/2015

Sprycel: 100mg

 

May-17: 0.0095% IS

Aug-17: 0.0048% IS

Nov-17: 0.0066% IS

 

 


#27 Marnie

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Posted 27 November 2016 - 01:21 PM

That was shortly after my diagnosis, too.  I don't recall the song, though I do recall lots of entertaining threads.  It was so nice that PhilB convinced me that I could still scuba dive, though he did say that a shart attack might bring on a shark attack.  What a great visual I get from that line!!



#28 Billie Murawski

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Posted 28 November 2016 - 04:25 AM

Marnie, I remember that post being talked about when I first joined this group in 2010 I think, And I was so happy to find this site, but figuring out the lingo is a bit scary. I browsed for a few days at first before I introduced myself, and I figured out sharts right away because I had been on Gleevac for 3 years, but I really couldn't figure out why someone would go scuba diving if they never knew when the sharts would hit.  It's tough when you are a newbie.        Billie



#29 Billie Murawski

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Posted 28 November 2016 - 04:29 AM

All very funny!  I wondered how I had missed this edifying thread, then I looked at the date.  Really had a pang.  I was into my first month of Gleevec at the time y'all were writing, miserable and scared beyond belief, sicksicksick.  I had not found this site yet and I had nobody.  "Most people tolerate the drug very well.  See you in a few weeks." That's all I had from the onc, and it was just me and the internet.  I feel so sorry for that person from so long ago!

Me too Kat it took me 3 years to find this site, I always was a late bloomer, But better late than never!    Billie






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