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Will I ever feel good again?


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#1 Teresabourgeois

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Posted 11 June 2011 - 01:51 PM

After 4 months of CML and Sprycel my labs and bone marrow test all look good.  Seems the medicine is doing what it is suppose to be.  So I was thinking I should be feeling better...?  But I don't!  Is this the new me?  I'm a slug with no energy.  I look tired and haggered most of the time.  Will I ever feel well again?  ASKING ALL CML WARRIORS



#2 Skittles

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Posted 11 June 2011 - 03:31 PM

I don't know if this helps or not but it took me 6 months to feel even human after starting Gleevec but as time went on I felt better and better and by the time I reached a year I felt 'almost' like my old self. My energy level still is not what it was pre-Gleevec but I honestly did feel better as my body adapted to the medication.  It takes time for most of us so hang in there and hopefully you will be feeling better shortly.  Best Wishes, Skittles



#3 knoppl

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Posted 11 June 2011 - 04:17 PM

I have to agree with Skittles. It took quite a while to feel ok again. I found the 13 month mark and all of a sudden I had more energy and just felt better overall. I know this seems like such a long time but it goes fast and hopefully it will keep getting better as time goes on.



#4 hannibellemo

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Posted 11 June 2011 - 06:10 PM

Teresa,

It took me several months and lots of whining on this board but I really feel pretty good now. I was so shocked to feel so crappy on Sprycel when I had had relatively few side effects on Gleevec, it really set me back on my heels.

I'm 19 months in, MMR, my side effects cycle and I have weird dysfunctional platelet episodes but all and all life is good. In hopes of appeasing the gods, I'm well aware that all of this could change at any time!

I say it alot, but I truly could not have done this without the support of everyone on this site! Be sure a take advantage of the support every chance you get.

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>


#5 CallMeLucky

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Posted 12 June 2011 - 02:25 PM

I would say yes, you will feel good again, but accept that it will likely be intermittent.  I have found over time the effects cycle.  They are not that bad and I have my good days and not great days.  Hang in there, I think it will get better.

Also, realize it has only been four months and you are going to have to be more proactive about your day to day health to help keep you feeling decent.  Healthy diet, good amount of sleep and regular exercise are going to be part of the equation.

Hope you feel better soon.


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%
 

 


#6 sferrazza

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Posted 14 June 2011 - 04:00 PM

Hi,

Sorry about your diagnosis!  I've been on meds for 1 year for CML.  First Gleevec which sucked and now Tasigna which is much better.  I'm still waiting to be my old energetic self but the days are getting better.  I used to sleep so much and felt fatigued all the time.  Now I'm not as bad as 5 months ago but still not back to what I consider normal for me.  Good luck with everything!

S



#7 Marnie

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Posted 17 June 2011 - 05:34 PM

Hi, Teresa . . .

Yes you will feel better, but you probably won't ever get back to your old normal.  I'm sure you've already done this, but it helps me to get out and do things, even though I don't have the energy I'm used to having.

Good luck!

Marnie






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