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Time for a new Doc?????

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#1 SR Bruiser

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Posted 16 October 2017 - 09:11 PM

As I continue with the angioedema episodes 2nd one in 8 weeks a visit with the Oncologist revealed I will continue on the benadryl/prednisone for a total of 10 days and then back to Sprycel 100 mg. Asked about dose reduction and the reply was I have to reach 0.000/ undetected and stay undetected for 2 years before any talk of dose reduction. So is it time to find another Doc ?


As I continue reading Trey's blog again and again [THANK YOU for all the information] alcohol should not be a factor but I remember having some red wine the night before and maybe I have a problem with sulfides any thoughts ???


Scuba I picked up some Curcumin, will start a few days after the Sprycel restart maybe it will help the knees and shoulder, how is it going post Harvey in the Houston area?




10/2016    WBC 33K

11/2016    WBC 45K   

11/2016 PCR 38.3 BMB

12/2016   500 mg Hydroxyurea for 3 weeks

12/2016   100 mg Sprycel started

03/2017    PCR  3.854 IS

06/2017    PCR  1.467 IS

8/2017      PCR  0.947 IS

#2 scuba


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Posted 16 October 2017 - 09:27 PM

Houston is recovering very fast - so much generosity and "can-do" get it done here. The only thing left for us now is to beat the Yankees and head to the world series. That would make Houston proud.


p.s. get a new oncologist if you can.

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 SR Bruiser

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Posted 16 October 2017 - 10:02 PM

Thanks scuba I was getting a very uneasy felling with them after reading Treys blog, was going to see if Trey had any suggestions?.good luck with the Yankees.

#4 cmljax


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Posted 17 October 2017 - 09:25 AM

Look at my signature - my oncologist has permitted me to reduce dose 3 times during the first year of treatment to help combat some pretty nasty side effects.  He has done this because my response has been so good - MMR in less than 3 months; etc.  I have only been undetectable since my last test 4 weeks ago.  While my oncologist would say that you should at least get to MMR before considering dose reduction, you should not have to be undetectable for 2 years. Even the DESTINY trials were not that stringent. If your oncologist continues to insist upon this as the criterion for dose reduction, he/she is behind the times so you should find one who is willing to adjust your dose based upon finding the right balance between response and side effects.


Good luck whatever you decide

Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative

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