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please help, anyone on Bosulif


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#1 susanlathers

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Posted 21 January 2014 - 09:02 PM

I have been on Bosulif for 12 days and I would rather have diabetes from Tasigna or PE's from Syrycel ot what ever the Glevec side effects were 7 yrs ago when I started this journey. Or I would rather die.  Can anyone tell me if the nausea goes away?  It is constant, I do not want to eat anything, have lost 6 lbs.   My onc gave me a nausea pill they give for chemo therapy and I have not thrown up but the sick, constant nausea is getting me down.  I had diarrhea for 2 days, 6 days apart and in between  have no bowel action.  It may be because I am not eating enough.  I have tried every remedy for that, that I know of.  I'm not constipated, just no urge to go.  I will give it, maybe, another week and if it doesn't get better I will beg to go back on Tasigna.  I will loose the will to live if I have to live this way.



#2 Trey

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Posted 22 January 2014 - 07:19 PM

Generally it takes several weeks to adjust to a new TKI.  You have seen this before, but maybe not as difficult.  There is little experience with Bosulif. 

"the most dominant adverse events resulting from bosutinib treatment are gastrointestinal toxicities (mainly grade 1/2 diarrhea and nausea)"

http://www.ncbi.nlm....les/PMC3652479/



#3 Melanie

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Posted 24 January 2014 - 04:49 PM

So sorry to hear you're having such a hard time on Bosulif.  I've been on it for over a year now and have not had any of the severe issues you are describing.  If your Onc agrees, maybe start with a lower dosage and gradually work up as the side effects and your body adjust. Although, I'm not on full dosage, each increase brings a few weeks of increased diarrhea and a bit of nausea, but my body seems to adjust given time. Hopefully a more gradual approach might help you.

Melanie


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#4 susanlathers

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Posted 25 January 2014 - 01:40 PM

Thank you Trey and Melanie

   It seems, either due to my age or having been on so many powerful medications, my body is rebelling and over reacts to side effects.  What ever "normal" side effects are, for me they are worse.  My onc said I could go back on Tasigna and deal with the blood sugar problem if I wanted. I was off TKI for a few months and PCR went from 0.67 to 70% so really need to do something.  Thank you for your encouragement.

Susan



#5 CallMeLucky

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Posted 26 January 2014 - 04:40 PM

I would consider a ramping up strategy if doctor agrees.  When I switched to Sprycel 100 I had problems, I dropped to 50 and was fine, worked up to 70 and have recently started on 80 and will soon be going to 100.  80 today is not giving me much trouble at all, where it had in the past, so it seems my body is tolerating it better now than it did when I first tried it.  Seems like my body has gotten more used to it.


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 hannibellemo

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Posted 26 January 2014 - 08:22 PM

Susan,

I can relate to the "no urge to go" and I'm on Sprycel! I've never been constipated on it (thank heavens) but I do seem to run through a gamet of gastro-intestinal side effects. I believe you said you developed PE immediately with Sprycel, but I wonder how you would do on 50mg.? That's what I've been taking now for nearly two years after my PE (after 2.5 years at 100mg.)

One reason I really pushed for 50mg. is because I had such awful side effects with Sprycel for the first 4 months and my docs knew I didn't want to "break in" a new drug if I didn't have to.

I go for my 6 month PCR this Friday. Hope I remain at MMR or lower. I'm at the lowest I've ever been, 0.02.

Good luck with your decision!

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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