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First Month on Sprycel - Need some advice please!


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#1 Mobirdies

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Posted 12 March 2013 - 12:16 PM

Hi All,

I'm feeling real down right now and I need some positive encouragement.  I had my first oncologist appt. yesterday to review my first month on Sprycel and my oncologist stated that based on my last four weeks blood results it seems that I'm doing good so far; however, he strongly suggested that I consider a bone marrow transplant as an option and he also said that he's going to start the process to get ready for it in the event that Sprycel does not work for me after we evaluate my first major blood test results which it is scheduled for the first week in May.  As you can see that's not what I was hoping to hear from him after my first month on Sprycel.  I've been feeling better than I did on Gleevec, I have more energy and my side effects are not that bad. My white cells are under control at the moment.  Can an oncologist predict what's going to happen to a patient after evaluating the first month blood test results?  Any feedback you can provide would ge greatly appreciated!



#2 CallMeLucky

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Posted 12 March 2013 - 12:23 PM

No your Dr cannot predict anything.  He can make a guess based on his experience, which may be a completely different guess from another Dr with different experience.  Watch your results and don't let anyone rush you into a BMT.  Even if you do need one, that should not be determined without getting at least two or three opinions.

Best of luck and congrats on feeling better and having good results so far.


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%
 

 


#3 Mobirdies

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Posted 12 March 2013 - 10:52 PM

Hi CallMeLucky, Thank you for your feedback.  I will definitely get a second opiinion.

#4 ritan/

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Posted 13 March 2013 - 03:43 AM

yeah, there's no way anyone can predict outcomes without actual test results. and even if Sprycel doesn't work, why would he immediately jump to transplant? there are several other TKIs to try, and i'd think you'd want to exhaust all possibilities unless the disease starts to progress. i certainly wouldn't risk a transplant if there were any other choices.



#5 Trey

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Posted 13 March 2013 - 09:28 AM

You did not respond very well to Gleevec, but that does not mean you won't do well on another drug.  Most who fail Gleevec will do well on the second generation drugs.  Your Onc may just be taking introductory steps and being overly cautious as a back-up plan, but he will not know how well Sprycel is working for several months. 



#6 Melanie

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Posted 15 March 2013 - 12:20 PM

I had a similar experience with my hem/onc also thinking about a BMT.  We did all the preliminaries, thinking this may be the route needed.  Almost two years later, we're still working on all the other alternatives...and there are many.  No one suggested the BMT, except as a very last resort, even my BMT doctor. I have a good non related donor match which gives me comfort if all the options do eventually fail.  Good news is that there are always new drugs and treatments coming out to help fight this disease, so it seems there's always another treatment plan to try. So as Trey says, your Onc is just setting up a back up plan like mine did...in the hope of never needing it.  Hope this encourages you some and may the Sprycel work on 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)

#7 Mobirdies

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Posted 28 March 2013 - 04:14 PM

Thank you Melanie and Trey.  I hope Sprycel works for me.






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