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Just had 18 month PCR and still not MMR


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#1 Cliffee

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Posted 27 January 2013 - 04:13 PM

Hi,

Wondering if I can get some suggestions and recommendations.

Was DX July 2011 and started on 400 Gleevac. I understand I am a slow responder but now I'm reaching that point on whether to stay the coarse or switch to another drug. I have no side effects other than slightly puffy eyes.

My Doctor at Mayo says he fine either way but if I want to start hoping to see PCRU one day and be eligable to stop meds a switch might need to be in order. He also said that since I'm CCyr long term that's what matters most and there is now evidence that proves it.

Dr. Druker has also said two months go that he is reasonably satisfied with my results so far for the time Ive been on Gleevac.

What to do?

3 months 53% International /20% Mayo

6 months 6.1 Int. /2.3 Mayo

7 months 2.9 Int. /1.1 Mayo

9 months 3.7 Int. /1.4 Mayo

11 months 4.5 Int/1.7 Mayo

Upped to 600 Gleevac

12months CCyr Bone marrow results.

14 months 2.1% Int. /.8 Mayo

16 months 1.3& Int. /.5 Mayo

18-19  months 1.6& Int / .6 Mayo

Thanks for the help!

Cliff



#2 scuba

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Posted 27 January 2013 - 06:53 PM

Cliff,

CCyR is most important, but it is very understandable to want to get to PCRU.

If that's your goal - then switch. Switch to Tasigna or Sprycel. Chances are you will drive your PCR numbers much lower faster.

You will certainly get to MMR and perhaps PCRu.

Staying the course will give you more of the same results.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#3 Trey

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Posted 28 January 2013 - 09:59 AM

You are doing OK, but I would switch to another drug. 



#4 Cliffee

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Posted 05 February 2013 - 09:24 PM

Looks like I'll be switching to Tasigna. 400 x 2 per day.

I'm a little nervous after reading some of the potential side effects. Mainly the Heart related ones like "Sudden Death!

Does Tasigna have a record of this ever happening?

I work out a lot. Gleevac has been great side effect wise. I would hate to drop dead on the treadmill .

I don't take any other meds. I'm 45 years old.



#5 HeatherZ

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Posted 07 February 2013 - 02:55 PM

Hang in there.  I was diagnosed in March 2010 and just last week got the news that I finally reached MMR.  I have been on 400mg of Gleevec since the beginning and I too was wondering if I was ever going to hit MMR.  So many people on her reported hitting the milestone so much quicker than I was and it was discouraging.  I was asking for a drug swich and my doc kept saying he didn't think it was necessary.  So needless to say, I was pleasantly surprised with my results last week.  Good luck with the drug switch!



#6 holygeez8

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Posted 07 February 2013 - 03:04 PM

I would go for the change of drug.  I spent 6 months on Sprycel and never went below 74%.  I switched to Ponatinib and I just got a call from my doctor yesterday that I am at 0% in a month and a half.  I don't have my exact numbers. He just called me to tell me and I will find out more tomorrow. 






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