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Am I always gonna do this well or am I just lucky?

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#1 luvmybees24


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Posted 11 March 2012 - 02:03 PM

I have been on Tasigna since November 2011. Was dx with WBC at 28, Highest they went was 40 and were down to 7 in a month. Besides the annoying hip pain from my BMB, occasional bloating and hair thinning a little, oh and dry skin..I feel perfectly fine. I'm not overly tired at all like I hear others say. Is it because I'm relatively young (35) or because it was caught so early or because I have such a good response on Tasigna? Or is this just gonna eventually go downhill? I feel bad complaining because I know other people have it worse than I do but I am wondering if I have kinda kicked CML's ass? I guess I'll know more after my PCR test results come in. Just wondering if this is normal or if I'm just one of the lucky ones? All my ailments usually have to deal with my obesity so any pain I feel I just attribute it to that but other than that I have normal energy levels...even for a fatty.


#2 tiouki


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Posted 12 March 2012 - 09:13 AM

I think I already answered a similar post, but your feeling is what many people have under TKIs : we do ok, or great. Maybe the young age helps, but for many people the drugs are well tolerated.

I don't think that the side effects you have or don't have has any link with the response you have or the fact that you have been caught early. Still you probably or one of the lucky ones

There is no reason that you'd feel worse in the future.

I am 22 with sprycel and have no side effects at all.

Good luck!


#3 mscl


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Posted 12 March 2012 - 01:25 PM

Pierre responded to me not too long ago on this as well. I was just diagnosed in February and on Sprycel. Doing fairly well myself as well right now.  I have just a little fatigue, nothing I can't handle yet. I can't tell if my hair is thinning yet, but it looks like there are a few more loose hairs in the comb. I think I'm felling a little joint pain, but not sure if that is because I'm a little less active right now or the meds.  Age 47...also known as age 29 and holding!


Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.

#4 hannibellemo


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Posted 12 March 2012 - 04:29 PM

Oh boy, Laura, now you've gone and done it - tempted fate!!

Seriously, I hope you are always this lucky and CML treatment is very boring and uneventful for you!




"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 cleocans


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Posted 12 March 2012 - 04:46 PM

Besides my water retention I have been very fortunate on Sprycel.  I get the occasional bone and joint pain but that's about it. (knock on wood)  39 years old here.

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