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#1 djm

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Posted 06 June 2012 - 09:03 PM

Hey everyone, I was just diagnosed at the beginning of May 2012.  At the time of dx, WBC was at 300k.  Was immediately put on 600mg Gleevec, along with Hydroxurea for the first few days.  As of my last blood draw, my WBC is back to within normal range.  My onc is pretty happy with the progress.  I think the Gleevec is doing a pretty good job....at least I hope it is.  I do have a  couple of questions that I hope you guys can help me out with.

1. My onc wants to put me on Tasigna, she feels that I would get a deeper response with it.  I'm wondering though, that since it looks like I am getting a good response with Gleevec, if it would be worth changing?  I like the idea of getting a deeper response, but right now the side effects with Gleevec aren't bothering me too bad.  I'm worried that that would change with Tasigna.  What do you guys think?

2. I need some help understanding my lab report.  What does it mean the Report titled, "GenoTRACE BCR-ABL t(9,22) Detection by Quantitative RT-PCR" says:

Results:  POSITIVE: Major breakpoint BCR-ABL transcript is detected at 29.335% on the international scale.

Notes: Quantitative PCR and capillary electrophoresis detect the presence of the major/p210 breakpoint (e13a2) BCR-ABL transcript.

Under the Clinical Utility section:

This quantitative real-time RT-PCR assay detects fusion transcripts resulting from breakpoints in various clustered regions of the BCR gene fused to the ABL gene: e13a2,e14a2(previous name b2a2,b3a2), the major breakpoint; e1a2, the minor breakpoint region; and e19a2, the micro breakpoint region.  The presence of these breakpoints is characteristic of the reciprocal translocaiton between the long arms of chromosome 9 and chromosome 22 [t(9,22)] (Philadelphia chomosome)

If I am understanding this mumbo-jumbo, I believe this is one of the common types of CML??  But I don't understand the 29% number.  Does that mean that of the cells they looked at, 29% of them contained this Philadelphia chromosome?  Then is this a high high number?

Any help you can give is appreciated.

DJ



#2 Happycat

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Posted 07 June 2012 - 04:21 AM

DJ,

Welcome to our little Island of Misfit Toys.

In answer to your questions:

1). Current thinking is that the faster and deeper your response, the more likely you are to maintain it without progression of disease. Tasigna and sprycel will both provide that deeper response. You should also consider the dosing schedule and side effects. Tasigna can be tricky to take, since you must do it twice a day and limit food intake before and after. So you might want to think about how regular your eating schedule is now, and whether you can handle the requirements on tasigna. I'm not on it, so you'll have to get that perspective from others. Nor can I speak to side effects.

2). Yes, you have the most common type of CML, where the gene most often breaks during the translocation. Regarding the 29% on the IS (international scale), this is a way to quantify PCR values across different laboratories. Previously, the values were lab-specific, and you couldn't compare values from lab A to lab B.  But with IS, you can. I am not sure if the value was at diagnosis, or is a more recent number. If at dx, then read it as your value was 29%, whereas 100% represents the average value at dx.  When they set the IS scale, they used a group of patients to determine the major points on the scale.  So it's not the value of ALL CML patients, just the cohort of patients they used to set the scale.

Hopefully I got that right. If I didn't, I'm sure someone will correct me.

HTH,

Traci



#3 cousineg

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Posted 07 June 2012 - 09:08 AM

HI  DJ,

  If you've just been diagnosed, I suggest you to meet the nurse Carolyn Blasdel .

I suppose that you love painting. Take a break of reading medical topics and  go to that link: CMLer's portofolio

But If you like more music, then go to:

   The march toward healing

   Too much angels in heaven!

   The battle for healing

    Dia international de la LMC (Spanish music)

 

Welcome to the group,                 

                                   Gilles

Other links: Polymerase Chain Reaction (PCR) - CML

                   Tasigna (Nilotinib)

                   Educational videos



#4 Ray99

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Posted 07 June 2012 - 09:11 AM

DJ,

     I was diagnosed in the late March and my onc put me on Tasigna (300mg 2x daily) right away after confirmation of CML.  I did not get much side effect other than occasional rash on my face, not too bad.  I was able to do my normal daily routines with no difficulty.  There is a three hour period of no food restriction, two hour before and one hour after taking the pills.  It is not that inconvenient, I took mine at 10am and 10pm.  After 4 weeks, my PCR reading dropped to 10.4%IS from 73.3% at dx. 

     Then, my platelet count dropped too low and my onc took me off the medication for three weeks until my platelet went back to normal.  From the reading in this board, I understand that is not unusual.  Now I am on half dose of Tasigna.  In two week, I will have another office visit and he will reevaluate whether to go back to full dose.  While on half dose, I have no side effect at all.  So far, I have good experience with Tasigna.  But everybody respond to the medication in different ways.  I would recommend you to try it.

Ray



#5 CallMeLucky

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Posted 07 June 2012 - 09:52 AM

Different doctors have differing opinions about which drug is best.  You are responding well on Gleevec, although you are at 600mg which is higher than the 400mg standard dosage.  Did the doctor indicate any reason why you were started on a higher dose?  What phase were you in when diagnosed?

For a Chronic phase patient there are various things to consider when deciding to change between drugs.  The newer drugs are more powerful but they have not been around as long and the longer they are around and the more people that use them the side effect profiles are becoming more obvious.  It was thought the newer drugs have fewer side effects and that tends to be true, but it also seems they potentially have more serious side effects for those that do have an issue with them.  Some people like myself feel they may be overdosing some patients on the newer drugs since they are so much more powerful.  Gleevec has been around for a long time and there is a lot of history on it, relatively speaking.  Of the people who have been on it for a long time there do not appear to be any serious long term effects.

There is no right or wrong answer, it just depends on which drug works best for you and gives you a good quality of life.  Before anything else I would try to find out why you are on 600mg.  I would be more likely to switch to a different drug then stay on the higher dose of Gleevec, but again it depends on the circumstances.

Best of luck


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 Trey

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Posted 07 June 2012 - 09:56 AM

You have the "standard" CML chromosome breakpoint and your PCR at diagnosis was comparatively on the lower side of expected PCR International Scale diagnosis levels.



#7 LivingWellWithCML

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Posted 07 June 2012 - 10:50 AM

Lucky is asking a good question about why you started on 600mg instead of the standard 400mg.  But if your side effects are minimal & manageable on that dosage, and you are responding well based on the FISH and RT-PCR test results, then you could definitely continue with Gleevec and not switch to Tasigna.  Some (not all) do respond quickly on Gleevec, so it's certainly an option.  Gleevec has been around longer, and it's less expensive than Tasigna and will go off-patent sooner .... so many things to consider.  Philosophy also comes into play.  Some oncs believe that starting on a second generation TKI is best, and others believe (for chronic phase) that you should try Gleevec first then switch only if you aren't responding well, etc.  But the good news is that we have great treatments available and multiple options if one doesn't work well.  Thank goodness for that!

If you started Gleevec at the beginning of May, then the onc should do a FISH and PCR test at the beginning of August (3 month point) to establish how well you're responding at the genetic and molecular level.  You could wait until those tests to see how things are going - or you could go ahead and switch.  Up to you in collaboration with your onc.  Note that Tasigna, albeit more powerful, has some fasting requirements that you have to plan around, vs. Gleevec that you just take once daily with a meal.

BTW, your treatment goal is to get your FISH test to return negative (called a Complete Cytogenetic Response [CCyR]) as soon as you can, and to get your PCR test (over time) down to 0.1% or even lower (called a Major Molecular Response [MMR]).  Bottom line is that if you stay on Gleevec and your FISH trends down to 0%  (generally, over 12 months or sooner) and your PCR continues to trend downward toward 0.1% or lower, then you'd be doing just fine without having to make a switch.

That said, the data has shown that patients are generally responding faster on the newer TKIs (Tasigna and Sprycel).

For my case, I was started on Gleevec 400mg in April 2011 - I pressed about this and my onc's philosophy was to start w/ Gleevec and monitor, then switch only if I didn't respond well.  So I tried not to panic (LOL, another subject), and waited for my 3 month, then 6 month test results, and beyond.  My FISH went to 0% before the 6 month point, and I reached an undetectable PCR test result at the 12 month point, so Gleevec has been working out for me ... and with manageable side effects.  My personal philosophy (looking back) is that I would've pressed for either Tasigna or Sprycel if I hadn't reached 0% FISH by 6 or 9 months - that would've definitely prompted me to push for a change, but that's just me.

Hope this is helpful -


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#8 djm

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Posted 07 June 2012 - 11:48 AM

Thank you all for your responses.

In answer to Lucky's question regarding the dosage of 600mg, I'm not quite sure to be honest.  She did start me out on 400mg, but then after a couple of weeks she changed it up to the 600mg.  I will ask to see why.  Things were happening so fast at the beginning, but I do recall her saying that she isn't conservative when it comes to treating.  So, my gut says she did this as an aggressive tactic, or she is just trying to ensure a good response.  The side effects are minimal, unless I forget to eat something with it, and boy do I feel it then.  But I will have to see if there is a specific reason.  Also, at the time of dx, I was in chronic phase.

If, and I think I will, go to Tasigna, will the option of going back to Gleevec still be there?  I've read about some developing resistances, so would that be something I would need to think about?

One of the more worrisome side effects of Tasigna, is this QT prolongation.  Anyone know how prevalent this is?  I figure though as long as my EKG doesn't show anything, and my potassium and magnesium levels are normal, that shouldn't be something I need to worry too much about.



#9 CallMeLucky

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Posted 07 June 2012 - 02:00 PM

It sounds like your doctor is very aggressive in treatment.  That can be good and bad.  It is easy for her to take this approach since she is not taking the drugs, but you are the patient so keep an eye out.  If you have no side effects so far that is good, but some side effects build over time.  If you do not need 600 mg, then you really shouldn't be on 600 mg, but that is for the doctor to decide.  Her aggressive approach also makes sense given the desire to switch to the more potent Tasigna without really giving Gleevec a chance.

To answer some your questions

Switching to Tasigna would not preclude you from going back to Gleevec.  The only reason you wouldn't go back to Gleevec is if it wasn't working for you, but if she changes you while you are responding well to Gleevec, then it is certainly possible to go back.  Developing resistance should not be impacted by changing to Tasigna.  With regard to the QT-Prolongation issue, that hasn't really shown to be much of an issue.  Some have reasoned that the warning is more a product of lawyers then actual doctors.  The bigger issue with Tasigna appears to be Pancreatitis which seems to be occurring more frequently.  It is usually controlled by coming off the drug for a while and then starting back up at a lower dose.  Skin rash is also a common issue with Tasigna.

My only advice would be to have a frank discussion with your doctor about her approach to treating this disease and make sure you are comfortable with it.  Some patients want to be very aggressive, others prefer to take a more conservative approach.  The important thing is to find a doctor who's philosophy is somewhat in line with your own.  The expectation is that you are going to be in treatment for a very long time and deal with this doctor for many years so you should make sure you trust her and agree with the way she is going about things.


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%
 

 





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