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results are in: PCRU on Gleevec 300mg.


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#1 simone4

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Posted 11 April 2012 - 05:26 PM

I wanted to share my news especially in light of recent discussions

of dosage lowering.  I have been on 300mg.of Gleevec for three

years, reduced from 400mg. after only 3 months after dx. My

wbc, neut., remain low, but consistenty low. 

I think of you all each day and I hope for deep responses for us all.

I will now raise my glass of bourbon, put on  Nina Simone, some

Stevie Ray Vaughn, and alot of Hendix and toast to a decent day.

Simone



#2 GerryL

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Posted 11 April 2012 - 06:59 PM

Hi Simone,

Thanks for the info - I'm going to talk to my doc about lowering my Gleevec dosage to 300mg if I can maintain my PCRU for a year. After 18 months on Gleevec, my side effects seemed to have ramped up a bit. Maybe then I can have a glass of red wine without having to take a fluid tablet.



#3 hannibellemo

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Posted 11 April 2012 - 07:35 PM

That is truly wonderful news! A little "Foxy Lady" is in order!

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>


#4 LivingWellWithCML

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Posted 11 April 2012 - 08:43 PM

Wow, that's fantastic!  What are your WBC and Neutrophils usually?  I just got my 1-yr CBC today on Gleevec 400mg (waiting on FISH/PCR), and although my WBC ticked back up to 4.x at the 9-month check, it's now back to 3.x (and Neutrophils ~ 1.5).  I don't think I should be alarmed by these levels, and I imagine it could continue to be like this for years...


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#5 Trey

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Posted 11 April 2012 - 09:04 PM

How you say in French "I dropped another log"? 

Hooray for the dose splitting low dosers....and for Hillbilly French ladies. 

Tres bien, y'all.



#6 valiantchong

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Posted 12 April 2012 - 01:31 AM

CONGRATULATION...so happy for your excellent result. This has contribute to the statistic of success of lower dossage....



#7 ChrisC

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Posted 12 April 2012 - 01:39 AM

Cheers to you, Simone!

Hooray!

<clink>

Turn up that music, willya? Thanks!

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#8 simone4

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Posted 12 April 2012 - 03:39 PM

Thank you for responding to my good news. Hope everyone

has continued success as well.

Oh Trey, "hillbilly", really?  I had to ask my neighbor exactly

what this meant.  She said (or rather she hollered) that hillbillies

drink moonshine, not bourbon.  And I have to say "you all" because

when I don't someone invariably corrects me.  My neighbor,

when she cannot understand me, says: "Spell it , swettie".

Simone



#9 GerryL

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Posted 12 April 2012 - 06:29 PM

I think is is actually spelt y'all and you say it as one work - yawl

Try to see if you can get watch an episode of the Beverly Hillbillies



#10 PhilB

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Posted 16 April 2012 - 07:36 AM

Congratulations Simone!  Sitting here with 'My Baby Just Cares for Me' running round my head after reading your post.



#11 simone4

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Posted 16 April 2012 - 09:52 AM

Yes, Nina loved that song. I saw her live when I was a young teen in

Amsterdam.  A very small audience and she was beautiful and

had fun with us.  I still love her version of "I Put a Spell On You".

Merci

Simone






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