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Increase Dose?


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#1 JoshLee

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Posted 11 April 2013 - 10:01 AM

Hi Everyone,

       So, I just have a quick question because I want to get some opinions. I am about 27 months past DX. I was on Tasigna, I had a flat response on PCR for over a year. Anywhere from 1-3% IS Scale (Tests done at U Mich, not my normal hospital). About 7 months ago I went to U Mich to see Dr. Talpaz. He suggested 70 mg Sprycel. I started that and have had some success. On my PCR test at my regular hospital I went from a .9 log (0.20% against the control gene) reduction at the beginning of Sprycel to a 1.5 log (0.069% against the control gene). I know this isn't exactly speedy, but considering my PCR didn't move for over a year, I'll take it. However, I am wondering if I am short changing myself because I am not on 100 mg of Sprycel. I have almost no side effects so I believe I could tolerate more drug. My WBC usually hovers around 3.8-4.3 so a little low. How would you apporach your oncologist about this? I know mine will say "We'll we've established a trend with the 70mg, so why change". Thanks for the feed back.



#2 Trey

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Posted 11 April 2013 - 12:30 PM

100mg Sprycel once per day is the recommended starting dosage, but after the leukemic load has decreased significantly 70mg should be a therapeutic dosage for most.  Although there would not be anything wrong with asking to increase dosage, at some point with increased Sprycel dosage you start tempting the pleural effusion issue, which can put a patient off track for an extended period of time.  And you cannot see the PE coming, even if you currently have "almost no side effects"  So it might be better to wait through another PCR before trying to make any changes. 



#3 CallMeLucky

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Posted 11 April 2013 - 02:48 PM

I can tell you that there is a big difference between 70mg and 100mg in terms of side effects.  At 100mg I went to ER twice with chest pains and cough.  At 70mg I did not have that problem.  Still had some muscle pain and overall not feeling great (I am currently at 50mg which feels better).  So while on one hand I would think it makes sense for you to be at a higher dose to drive it down more, on the other hand Trey makes a good point - Sprycel is a powerful drug and I can tell you that 20-30mg changes can make a big difference.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#4 hannibellemo

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Posted 11 April 2013 - 09:57 PM

Josh,

I just want to second what Trey says. I felt really good at 2.5 years on Sprycel when the pleural effusion came out of left field. Was not expecting that and I was off Sprycel for nearly 3 months. Lost my MMR, bummer. Be a tortoise and stick with the 70 for a bit longer and see how it goes.

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>


#5 hannibellemo

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Posted 12 April 2013 - 06:55 AM

I forgot to add that your WBCs are my "normal" and have been for quite awhile and there are people on here that would love to have those numbers.

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>





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