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3 weeks on Gleevec


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#1 alc999

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Posted 26 February 2015 - 11:16 AM

Just wanted to share...I was diagnosed 1/28/15 with a WBC of 220,000 and and PCR of 195% b2a2 transcript. After 3 weeks on Gleevec I'm down to 13,000 WBC!

 

I had been worried because the original oncologist I was sent to didn't see a need to do a BMB. But this week I switched to a new doctor at a different cancer center and he completed a BMB the same day he saw me. Wasn't too bad and I'm eager to get the results in a week.

 

With the Gleevec I had nausea the first week, but it has seem to resolved itself. I had a full-body rash last week that has also cleared up once the dr had me stop the Allopurinol.

 

Feeling optimistic! 


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#2 Gail's

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Posted 26 February 2015 - 03:02 PM

Good response! How are you feeling?
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#3 Melanie

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Posted 26 February 2015 - 07:07 PM

So glad you saw a specialist. You're in Good hands at UMC. Please keep us updated and happy that your side effects are tolerable. Hopefully they'll get better with time.
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 Trey

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Posted 26 February 2015 - 08:33 PM

And without that nasty Hydroxyurea.  I wish Oncs would get a clue about that.



#5 alc999

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Posted 27 February 2015 - 02:23 PM

Yes, I was glad that my first dr didn't want to put me on Hydroxyurea!


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#6 Gail's

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Posted 27 February 2015 - 04:04 PM

I don't think allopurinol and hydroxyurea are the same drug.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#7 PhilB

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Posted 28 February 2015 - 08:35 AM

They're not.  Hydroxyurea is a somewhat indiscriminate chemo drug that brings down the blood counts.  Allopurinol is taken to deal with the impacts of lots of white blood cells being killed off in a short time - either by Hydroxyurea ir by a TKI.  Many oncs seem to like to hammer the high counts with the Hydrea first before introducing the TKI.  The only thing this treatment protocol really has to recommend it is the fun we have watching the steam come out of Trey's ears.  Generally TKIs do a perfectly good job on their own and the Hydrea can be pretty nasty stuff so it seems to be getting more and more common to use the "Trey-approved" method.

Incidentally, I went the Hydrea route and as soon as my counts normalised my Doc said 'Okay, you can stop taking allopurinol now'.  I couldn't resist saying 'Wow!  You mean you've cured my gout?'



#8 alc999

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Posted 28 February 2015 - 01:41 PM

Sorry - Didn't mean to cause confusion! At 220,000 my onc started me on Gleevec and Allopurinol (i.e. Trey's approved method? :-) ). And for me, it seems to be working well.

 

He discussed Hydroxyurea with me, but it was in terms of it being an option that he didn't recommend we take.


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#9 Billie Murawski

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Posted 28 February 2015 - 05:20 PM

So glad you're doing so well, and glad you went to a different onc, It seems like a bmb is the only way to get a true dx. It's uncomfortable for a few minutes  but worth it to know exactly where you are. I only had one bmb at dx in 2007.






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