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#1 pammartin

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Posted 21 January 2012 - 09:44 AM

Good Morning everyone,

Two questions, two separate issues.  Next Friday when I begin the 100 mg of Sprycel, any ideas on when I may see a change in my labs if it isn't going to work.  I realize each of us respond differently, but just wondering if anyone has experience with this?  Thanks

Second issue, I have taken 2000 mg of Lysine daily for a few days when I have mouth ulcers.  It seems to heal them quickly, without the Lysine I can have them for two weeks or more.  Well you guessed it, I woke this morning to a very sore mouth.  I didn't want to take the Lysine until I asked if anyone had an opinion on the effects and the TKI. 

Thanks! Again

Pam



#2 reedgirl

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Posted 21 January 2012 - 02:56 PM

Hi Pam,

  I can't help with the Lysine question, but can give you some info on Sprycel.  My husband went on 70 mg last March at least 7 months after diagnosis.  He suffered from pretty bad drug intolerance to Gleevec and Tasigna and was actually off medication more than he was on medication during that time period.  I think it was about 6 months after starting the medication his levels took a huge drop.  Hope this gives you a little peace as you begin the new drug and hope you see quick, good results!

      Audrey



#3 Judy2

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Posted 21 January 2012 - 03:17 PM

Hi Audrey,

I'm so glad you posted regarding your husband. I just started  50 mg Sprycel on Tuesday. I was dx last May, was on 200 mg Gleevec for 5  months but my PCR numbers were still high so then I went to 300 mg but could not tolerate the side effects. Also, could not tolerate the side effects on Tasigna. I'm curious, is your husband havng any side effects on Sprycel and do you know what  his PCR level was when he started Sprycel and what it was after 6 months? Thanks in advance.

Judy



#4 jrsboo

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Posted 21 January 2012 - 04:04 PM

Dear Pam,

I think most of the Sprycel folks (myself included) have reported fairly good results quickly.  But my memory is not what it used to be, so I could be wrong there.  I was dx really early and had an extremely quick response (down to normal from 42K in about 3 weeks), but I don't know if that is what the normal response is.

Best Wishes,

Caroline



#5 reedgirl

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Posted 21 January 2012 - 04:06 PM

Judy,

Greg's PCR in January of 2011 was .327.  He was put on 50 mg of Sprycel end of March 2011.  One month later April 29 2011 his PCR was 3.049.  They attributed that to him being off medication for so long prior to starting Sprycel, dr was not surprised to see an increase.  He upped the medication at that time to 70 mg.  In July 2011 his level went down to .108 at his appointment in November the lab "forgot to run a PCR", was what they told us.  Greg sees Dr Talpaz at University of Michigan, we really really like him so we don't fault him at all, things just happen I guess.  They overnighted us a package to take to our local hospital, get blood drawn and overnighted back to them to run the PCR.  The results from that came back at .135.  End of March will be one year since on Sprycel.  I have to be honest and say I wish his number was lower, 20 months after diagnosis I wanted him to be PCRU.  He may never get there, from what I understand some people don't reach that stage.  In the meantime, you asked about side effects, he really hasn't had anything severe, esp compared to what he experienced on Gleevec and Tasigna.  He gets tired, everyone does.  The worst thing he has is his stomach has gotten larger, looks like he's 9 months pregnant and just about every day he gets a headache.  I can not say the headaches are from the drug, he is under a great amount of stress at work. In fact, we leave home around 7:30ish every morning for work and some days he doesn't get home until 6, 7, or 8 in the evening.  Stress could be part of the cause of the headaches.  His face and neck also turn red a lot, I think he could have high blood pressure, he's going to see his pcp soon for that.  Overall, Sprycel has worked well for him.

I hope you have success on Sprycel without severe side effects.  It's so unfortunate these drugs give side effects, but then again what drug doesn't????  Best wishes to you in your journey!

Audrey



#6 Judy2

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Posted 21 January 2012 - 04:20 PM

Hi Audrey,

Thank you so much for taking the time to post, I really appreciate it. You mentioned that your husband gets headaches, I think that is a fairly common side effect of Sprycel. Rashes are also common. I'm thrilled that your husband has found a drug that he can manage with and is getting good results. I wish him continued good results in the future.

I have been getting mild rashes on Sprycel, I'm only 5 days into it now, and also sharp stomach pains and diarrhea every night. I'm hoping things don't get worse. I'm also hoping I don't get fluid retention, my kidneys aren't great to begin with.

Anyway, thanks again Audrey.

Judy






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