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Dyspnea (shortness of breath) with Sprycel of unknown origin


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#21 Billie Murawski

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Posted 03 October 2016 - 09:20 PM

Trey, I have some left over 50mg Sprycel, just in case I ever run short could I cut them in half to hold me over. I doubt that will happen but just in case, I take 20 mg would that 5 mg make a difference? 



#22 hannibellemo

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Posted 04 October 2016 - 06:06 AM

Sprycel is 90% absorbed from the stomach (as are all CML TKI drugs), not mostly from the small intestine.  So it does not matter either way if you cut it.

Thanks, Trey, now I could have sworn I read that somewhere, but it's right there in the Sprycel information PDF. So why then the directive about not cutting or crushing?


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>


#23 Trey

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Posted 04 October 2016 - 04:37 PM

Billie,

Pat cuts her Sprycel.  Ask her if you need more info.

 

Pat,

I believe the only issue is that lawyers are concerned a pregnant woman might somehow touch a crushed pill.  A silly issue, but somehow that is their concern.  Even if a pregnant woman touched a crushed pill it would be no issue at all. 



#24 DebDoodah22

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Posted 04 October 2016 - 10:20 PM

They did throw in a precautionary to pharmaceutical staff to take precautions ( glove up) when handling if the coating is cut. This gives me pause.

#25 Buzzm1

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Posted 05 October 2016 - 03:05 AM

I have complete faith in what Dr. Kantarjian at MD Anderson told one of our fellow CMLers in regards to cutting/splitting TKI tablets http://bit.ly/1oHD09v

 

As long as we aren't completely stupid about it there is very little to worry about.

 

Dr. Kantarjian also rails against the outrageous prices that we are being charged for these drugs.


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#26 Billie Murawski

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Posted 08 October 2016 - 01:12 AM

I had my check-up at cc x-ray shows small pe no need to drain it I'm just supposed to keep taking water pills and let them know if it gets worse Yippee!  I only take 20mg Sprycel so I can't go down to a lower dose. I can't take Tasigna to risky for me. Gleevac made me so sick so my dx is make sure I keep taking h2o pills and cope with the shortness of breath. The 2 bp pills I take also have a diuretic too. So I have to make sure I take them faithfully. I'm trying to move around more so maybe that will help. She said hopefully there will be a new drug that comes out that I can tolerate better. CRAP!!!!!!!!!!!!!

 Now I get a stress test Monday and I'll be cleared for Surgery Oct 31. I have another skin cancer on my leg and it's squamus cell a plastic surgeon has to do it because it's about 4" below my knee and right next to my shin bone. Hopefully he can avoid a skin graft. I am not into pain, I'm going to be laid up for a while and have a nasty scar but I have to have it removed. I had a melanoma about 11 years ago and 8 skin cancers removed now this somenabitch!  Maybe now would be a good time to read both copies of shades of grey.Or maybe not B) .  Boy a Margarita sounds good right now.  Thanks for letting me vent. Love Billie



#27 Marnie

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Posted 08 October 2016 - 07:29 PM

I make the world's best margaritas (or so I've been told).  I'll make one and drink it for you, Billie!



#28 Billie Murawski

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Posted 09 October 2016 - 02:24 AM

Billie,

Pat cuts her Sprycel.  Ask her if you need more info.

 

Pat,

I believe the only issue is that lawyers are concerned a pregnant woman might somehow touch a crushed pill.  A silly issue, but somehow that is their concern.  Even if a pregnant woman touched a crushed pill it would be no issue at all. 

Pat, Well I sure as hell ain't pregnant.



#29 Billie Murawski

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Posted 09 October 2016 - 02:27 AM

I make the world's best margaritas (or so I've been told).  I'll make one and drink it for you, Billie!

Marnie I have been craving a good Margarita forever. By the time I get to my Docs appt.s & get all the tests done I'm too pooped to go get a margarita.



#30 Billie Murawski

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Posted 09 October 2016 - 02:28 AM

I make the world's best margaritas (or so I've been told).  I'll make one and drink it for you, Billie!

Can you e-mail one to me?






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