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#1 cleocans

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Posted 09 November 2011 - 01:29 PM

I just got the results back from my first PCR test.  My onc wants me to up my dosage of Sprycel 100 mg to 140 mg.  He said he doesn't care what they were before he just wants to see zero.  I'm scared of upping the dosage.  I already retain water on 100 mg.  I'm worried about plural effusion with 140 mg.

The results I have are             10/25/2011                                                 7/20/2011

BCR?ABL PCR.BL               detected 0.500%                                        detected, Major

                                                                                                           b2a2/b3a3

                                                                                                            24.695%

Kim



#2 CallMeLucky

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Posted 09 November 2011 - 01:55 PM

If I understand what you put here you went from 24.695% in July to 0.500% in Oct (i.e. three months) and your doctor wants you to increase your dosage???!!!!!

Perhaps there are other details, but based on the information you have given, the only conclusion is that your doctor is an idiot, and a potentially dangerous one at that.  This is not chemo therapy and the goal is not obliterate everything at all costs.  You have had an amazing response given the information you have provided.  It is very likely you will be undetectable in the near future given your progress so far.  I would highly, highly suggest you get a second opinion from a more qualified CML specialist.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 cleocans

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Posted 09 November 2011 - 02:04 PM

I thought that sounded a little off.  But I wanted to see what others had to say.  He said all my other blood work was great.  Just my HGB was still a little low at 11.4.



#4 hannibellemo

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Posted 09 November 2011 - 02:09 PM

I agree with Lucky, so much so I'd be looking for another onc. Good luck.

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 CallMeLucky

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Posted 09 November 2011 - 02:22 PM

Well, hammering you with more TKI isn't going to help that HGB along.  It also risks bringing on more side effects and raises risk for the more serious ones.  What stage were you in when you were diagnosed, I know your CBC was pretty high over 200K, do you know what your blasts were?  I just checked the NCCN guidelines and the only mention of 140mg dasatinib is an option for patients in accelerated or blast crisis.  For chronic phase, it appears the guidelines only call for 100mg.  I'm sure there are doctors who will prescribe higher to prevent someone from going to accelerated phase, but that would be in the case of the PCR going up, in your case the PCR is going down.  Furthermore, if you were in accelerated phase and the doctor wanted to go with 140mg dosage, that should have been from day one.  It just doesn't seem to make sense to bump you up now when your PCR is going down drastically and you will likely get to zero in the near future without upping the dosage.  Did you have a FISH test done at Dx and/or this last test round?  What were the results of the FISH?


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#6 cleocans

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Posted 09 November 2011 - 02:28 PM

I feel so unprepared for all these questions!  Things I should know but don't.  I do believe a FISH was done at the start.  I don't know if one was done on my last blood work.  I don't know what my blasts were.  But will try to find out.



#7 CallMeLucky

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Posted 09 November 2011 - 02:35 PM

Don't feel overwhelmed, you are doing fine, actually you are doing really well, so all the details are not that important.  I was only asking to try and come up with a reason to go "ahh! that's why he wants to up the dosage" because I can't think of one - but of course I am not a doctor.  So as a patient, I am looking at it as I would if it were me.  Don't stress this too much.  The #1 thing to take away is that after 3 months of treatment you are doing amazingly well and that should be celebrated.  The other stuff needs to be addressed, but it is not as important.  Going to 140mg probably wouldn't hurt you, but it just may not be necessary.  So enjoy where you are and when you get a chance, consider getting a second opinion before you decide to up the dosage.  Or you could always just go back to the doctor and tell him you are not comfortable increasing the dosage given where you are now and you want to wait until results of your 6 mo tests.  Don't feel like you are unprepared - today is a good day, enjoy it!


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#8 cleocans

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Posted 09 November 2011 - 02:44 PM

Thank you Lucky!  Yes I should enjoy it!  I did call my onc and left a message about my stage and blast counts.  It is something I want to know.



#9 scuba

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Posted 09 November 2011 - 03:02 PM

"more TKI" is not better.  Each of us has a threshold where the TKI works best with minimal side affects.  Over doing the dose taxes your system unnecessarily.  And that is especially true with Sprycel.  Sprycel is nasty.  A -life saver - but nasty at higher doses - including the recommended 100mg. dose.  The good news is that lower dose, they are finding out, is quite effective.

You had a significant drop on the dosage you are at.  You should at least wait for the next PCR (3 months) and see what the next drop looks like.  If it is more than 2 log lower - you are doing great - and may even be able to lower your dose.  It may even be 3 log lower.

Your Oncologist does not seem to know the latest research.  You should ask him.


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"


#10 cleocans

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Posted 09 November 2011 - 03:07 PM

Thanks scuba.  I will definitely be talking it over with my onc.  He wants to do another PCR in two weeks, to see how the high dose is working.  But hopefully I won't be taking the higher dose.



#11 CallMeLucky

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Posted 09 November 2011 - 03:13 PM

Wow your doctor really worries me.  What exactly would he expect to find in two weeks?  Does he expect you to be zero?  If not is he going to want to switch you to another med?  What if your PCR blips up, then what?  What if it goes down - how much is going to satisfy him?  He is making very drastic decisions using a test that is known to not be that accurate, over time frames that no experienced doctor, I have heard of, would consider sufficient.

Please be diligent when dealing with this doctor.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#12 LivingWellWithCML

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Posted 09 November 2011 - 03:51 PM

Agreed.  The NCCI treatment guidelines are very clear for CML.  If you are responding well to treatment at the 3 month point, then you stay on the same TKI dosage and get the next FISH & PCR test at the 6 month point.  That is exactly the protocol that my CML specialist is following with my case.

The gang on this thread is asking all of the right questions:

  • Did your 3-month bloodwork include a FISH test?  If so, what was the result (percentage)?  Given the rapid drop in your PCR, I would not be shocked if your FISH is close to ... or completely negative (0%).  That would be an awesome result, but it's important to know.
  • Did you get a bone marrow biopsy when you were diagnosed?  If so, then it would be good to know what the FISH percentage was when you were diagnosed (it's usually pretty high because we're carrying a heavy leukemic burden in our marrow and bloodstream...mine was 98% positive for the Ph+ chromosome).
  • You definitely want to know the Blast Percentage from your bone marrow biopsy at diagnosis.  That percentage is one of the factors that's used to determine what phase the CML was in when you were diagnosed.  Many of us, for example, were diagnosed in Chronic Phase (which I believe is < 10% Blasts).

The more I follow this forum, the more I read about oncologists who simply do not understand CML or the proper treatment path.  Sounds to me like a second opinion (and probably a switch to someone else!) is prudent.

Regardless, your 3-month PCR is a pretty amazing drop, which means that Sprycel is beating down the CML hard and fast.  That's wonderful news for you!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#13 cleocans

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Posted 09 November 2011 - 04:06 PM

CML_in_ATL he did mention some about being negative (could of been FISH) but he wanted to see 0.00%  Damn, wish I wasn't so afraid to ask questions, but no more.  This is my life and I deserve to be involved in decisions that effect it.  I did have a BMB when I was diagnosed.  I'm still waiting for the onc to call back about stage and blast numbers.

It sucks to cause DH just left this morning for his Grandmother's funeral, she died yesterday of AML, and I can't talk to him right now.

Anyways, I am going to go celebrate with my girls tonight.  We will go get some ice cream!



#14 CallMeLucky

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Posted 09 November 2011 - 04:13 PM

Just remember that untreated CML is generally a slow moving disease, and yours is being treated and very much under control.  You are not in any kind of trouble and you have time to work these things out.  Keep that in mind.  You have things to work out, but you have time to work them out.

Enjoy your ice cream.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#15 Trey

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Posted 09 November 2011 - 04:38 PM

You have said a few times that this was your first PCR.  But you also list numbers from July that seem to be PCR numbers from what I can tell.  I presume you meant the first since diagnosis.  In reality, what matters most is your latest PCR test.  It shows that you are responding well.  Everything else is not very useful at this point, as long as your PCRs continue downward as a trend. 

Increased dosage does not always mean faster response, since it can cause low blood counts requiring drug breaks.  So a steady dosage that works well is often better than a higher dosage that requires regular drug breaks. 

Some questions for your Onc:

1) Have I achieved CCyR at this point (zero FISH or zero BMB)?  Isn't CCyR the treatment goal at 12 months, which is still 6 months away?

2) Given that the diagnosis was July 2011, how many CML patients achieve a zero PCR (PCRU) within the first 6 months? (Answer: Fewer than 1%)

3) If dosage is increased and it requires frequent drug breaks, isn't that going in the wrong direction?

4) If I want to balance response and quality of life, isn't that MY decision?



#16 cleocans

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Posted 09 November 2011 - 05:06 PM

I was diagnosed in chronic stage and am very well controlled, from the nurse.  She also said that they couldn't get a blast count because of something.  I couldn't quite hear what she said.  I asked her to have the DR call me tomorrow and will ask him the questions directly.

Thank you everyone for your responses.

Yes, Trey this was my first since diagnosis, sheesh!






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