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Has anyone had side effects STOPPING a TKI? (Sprycel in particular)


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#1 hannibellemo

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Posted 17 March 2012 - 05:55 PM

Ever since I stopped on Wednesday my arms and fingers have been sore. Weird, because they weren't sore when I took Sprycel. Just wondering if anyone has experienced noticed anything when stopping a TKI.

As suspected I really do not like prednisone! I hope I don't have any hidden psychotic tendencies!  I've read this drug can bring them out, perhaps deep down I'm not really a Hannibellemo but a Hannibal Lector! 

Pat


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"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>


#2 pammartin

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Posted 17 March 2012 - 07:57 PM

Hi Pat,

When I had my break from Sprycel (blood work bottomed out) I had a few odd happenings.  The first week taking Sprycel I had neuropathy pretty bad, but it disappeared in the 2nd week, during my break on the third day without the pill, I had horrible neuropathy for about another week.  Have to admit I was disappointed, everyone said to enjoy the time off the drug and not worry too much about labs and numbers, my body was adjusting, but although I believe I felt a bit better sometimes, I seemed to have some of the side effects when I first began taking Sprycel.  I also had headaches, joint aches, and a general feeling of yuck, if memory serves, just when I started feeling pretty good on the break, it was time to start taking it again!  I might look into prednisone for the rash and hot flashes my ear seems to have, I swear someone across the room can see my ear on fire and it is hot to touch.  I share your thoughts on the psychotic tendencies, in my case it is Murphy's Law, if I take the steroid they will appear!

Pam



#3 Guest_billronm_*

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Posted 17 March 2012 - 08:26 PM

Hi Pat,

   If you do get a drug induced psycosis I have a few people that I would love to have (wiped out) you could do it for me ,and there isn't a court who would convict you, because you are mentally unstable!   I would deeply appreciate it.  Sincerely Billie



#4 Trey

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Posted 17 March 2012 - 10:02 PM

Well, both you and Hannibal had liver issues.  Fava beans, anyone?

Hannibalellemo, Queen of De'Nile



#5 Judy2

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Posted 17 March 2012 - 10:40 PM

Hi Billie,

You are too funny. I always get a laugh when reading your posts.

Judy Judy Judy



#6 hannibellemo

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Posted 17 March 2012 - 10:55 PM

Pam,

That is so weird, but that is exactly how I feel now! Headache, achy joints, yuckky feeling. Geez, with Sprycel you get it coming and going!

Pat


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>


#7 hannibellemo

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Posted 17 March 2012 - 11:02 PM

Billie,

You'll be the first to know if I all of a sudden develop a taste for liver (and fava beans)! 

Pat


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>


#8 GerryL

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Posted 18 March 2012 - 02:18 AM

Hi Pat,

Just when you think you can enjoy a bit of R&R, those TKI's slip the knife in one last time, just to remind us who is in charge of our bodies.



#9 pammartin

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Posted 18 March 2012 - 08:02 PM

I will never, ever think of fava beans again without thinking of Hannibal Lector in Silence of the Lambs.  Talk about psychosis!



#10 pammartin

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Posted 18 March 2012 - 08:05 PM

Pat,

I have decided that Sprycel hits you in the chest with a 2x4 when you are taking it and slams you in the arse with the same 2x4 when you take a break!  Sprycel can handle a 2x4 with extreme accuracy.



#11 Guest_billronm_*

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Posted 18 March 2012 - 08:38 PM

Pat,

I will never eat liver again. But if you take me up on my offer,I'll put you in my will, and if I ever get anything you can have it all.   Billie



#12 pammartin

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Posted 18 March 2012 - 08:42 PM

Billie you just went out and ordered liver.  From now on order a very rare steak, not only does it taste divine (at least to me) you can annoy your dinner companions completely because of the juices on your plate.  Most people have rude things to say about my very rare steaks, but I do not ever mention they are eating moldy fungus when shoving mushrooms into their flapping mouths. 






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