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2nd time PCR tested -4.5 log - PCRU on Jan 17th, Dx Gleevec since Sept 2010.


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#1 valiantchong

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Posted 10 April 2012 - 05:57 AM

So gald today to get my results tested PCRU again since June 2010... after 1.5 years still PRCU.. now on 400mg Glivec. Hopefully could reduce to 200 mg after July 2012 comming test. Dont know if doc allow or not...:) But I am still happy to sustaining PCRU since last year..

Thank you,



#2 ChrisC

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Posted 10 April 2012 - 10:20 AM

Congratulations! Perhaps it's time to begin collecting the latest published studies of reducing your dosage, if you can find any, to support your request to your onc. And always, good luck and good health!

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!

 

 


#3 valiantchong

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Posted 10 April 2012 - 12:23 PM

Hi Chris,

Thank you for the comments. Would like to thank the people and friends on the boards here that had provided some advises and good information here to me and everyone openly so that I could learn more on this desease.

I dont see any known publication on dose reduction research papers so far on Glivec, it is only from individual experience.

I had a friend that age over 86 years old, who has CML on 400 mg, he reduced to 200mg successfully without his doctor knowledge....amazing isnt it... I want to stress this is not the correct way but one should seek the blessing of his doctor to monitor the PCR marker closely...

I am kinda worry too, on the accumulation of the medical toxicity years on the Tkis, I do hope we could get to the cure soon. But I am quite disappointed on the progress of the research results to find cure since the first TKI Glivec (silver bullet) in 1998...where until now there is still no where near the ultimate goal after 14 years...  However what we could do is just hanging on our life on the thread of TKi..



#4 hannibellemo

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Posted 11 April 2012 - 05:18 AM

Congratulations on your excellent results!

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 ChrisC

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Posted 12 April 2012 - 01:36 AM

Hi VC,

Here's another "good news!" report to share (I WISH that there was already a central place to post all of these reports, they are beginning to add up!):

http://newcmldrug.co...or-one.html#141

"I rarely post but I just wanted to say that yesterday was my anniversary -- the third year since discontinuing Gleevec in 2009. I was diagnossed with CML in June, 2000, was on interferon until December of that year until I was in the expanded clinical trial at Stanford University in California and started Gleevec. I reached PCR-undetectable in September, 2002, and have remained so over the years. I stopped Gleevec, with my doctor's permision April 9, 2009, and have remained PCR-U with every three-month check up since then. I am followed by Dr. Neil Shah at UCSF and we're both delighted with my progress. I'll continue (indefinitely? who knows?) having a PCR every three months. I hope that I might be one of those fortunate people who have been actually "cured" with Gleevec. Again, who knows. 

Nancy B from Californi"

--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!

 

 


#6 valiantchong

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Posted 12 April 2012 - 01:53 AM

I am so so delighted and happy for your excellent results... May you be cured and in PCRU forever.. Good to hear that, do post when you are free, so that we could learn your experience. Since you contribute to the cured statistic and a inspiration for us to duplicate your success...  Thank you for your sharing...Your good result will be a pathway for cure...



#7 ChrisC

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Posted 12 April 2012 - 02:40 AM

Do post your comment at the link above, so that she is sure to read it, please ?

I posted Nancy's comment here for those who don't also read that CML board.

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!

 

 





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