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Diagnosed with CML 2 years ago


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#1 Randall

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Posted 30 December 2016 - 02:33 PM

I'm a little scared because I got my results back and I went from 6% to 8%.  I went from Gleevec to Tasigna 2x/day 400 mg and now my doctor is going to be switching me to Sprycel.  He's also referring me to a bone marrow transplant specialist.  I'm a nervous wreck!!!!



#2 scuba

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Posted 30 December 2016 - 03:12 PM

Have you had a Chromosome mutation test - specifically to check for the t315i mutation. Before thinking about transplant you need to have your CML typed so you know what you have. It's important you find an Oncologist who is an expert in CML so you get the right treatment.

 

It is quite possible Sprycel will work for you. It is a very different drug from both Tasigna and Gleevec. Tasigna and Gleevec are structurally similar and work in a similar way although Tasigna binds more tightly to the response site. Sprycel binds to different sites and can usually work when the others don't. But it is important for you to find out.


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 Randall

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Posted 30 December 2016 - 03:25 PM

I did have the mutation test after I was switched from Gleevec to Tasigna.  The test results showed no mutation.



#4 thatguy

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Posted 30 December 2016 - 05:28 PM

Is 6% the lowest you've gone? I'm with Scuba, go see a specialist if possible. ..how often do you test?
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#5 Trey

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Posted 30 December 2016 - 09:54 PM

Your Onc is wise to do what he has done.  The drug switch is necessary, and the transplant consult is precautionary.  Sprycel has a reasonable chance to work for you, so that should be the primary focus.



#6 deva

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Posted 01 January 2017 - 01:13 AM

Why did you switch from Gleevec to Tasigna?

#7 r06ue1

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Posted 03 January 2017 - 06:34 AM

If Sprycel doesn't work for you try Bosulif, some have had good results from that switch.  If you fail Sprycel you also have the chance to get into the ABL001 trial which might do the trick.  

 

Avoid the transplant if possible.


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg





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