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One year PCR result is good but not great.....Need advises

Started by Ray99 , Apr 24 2013 05:09 PM

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5 replies to this topic

#1 Ray99

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9 posts

Posted 24 April 2013 - 05:09 PM

Just got my one year PCR result and the reading is 0.15%IS, 0.05% higher than 3months ago.

I am on Tasigna 600mg daily since diagnosed about a year ago. The PCR dropped to .23% in four months.

It then bounced between .3% and .1% for the next eight months.

Three month ago, my Onc said he might change to Sprycel if the reading do not go down further.

Now he want to wait for three more months to make that decision.

I have minimum side effect from Tasigna, occasional cramp and bone pain. Other than that, quality of life is very good.

I would like to get some advises or suggestions from people on this board.

1. Should I wait for three more months?

2. Should I get a second opinion from CML expert? I am four hours drive away from Dr. Talpaz.

My current Onc is considered a CML specialist in town. He does BMT also, but he has told me that it is unlikely that I would need it.

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#2 CallMeLucky

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216 posts

LocationCT

Posted 25 April 2013 - 08:57 AM

You might consider 800mg Tasigna before switching to Sprycel.

800mg is a "standard dose", Tasigna has two standard doses, 600 and 800. Maybe a little more gets you over hump, since you have minimal side effects the increase may not bother you.

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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#3 Trey

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LocationSan Antonio, Texas

Posted 25 April 2013 - 09:39 AM

Ray,

You are doing fine, hovering near MMR which is very good for one year. Your PCRs are statisically flat. The "Tasigna plateau" (flat PCRs) is quite common at the 1 year point. Personally, I would just keep doing what you are doing and see what happens in 3 months.

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#4 Ray99

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Posted 25 April 2013 - 12:51 PM

Trey and Lucky,

Thank you for your responses. I really admire your knowledge about CML and TKI. I will ask my Onc about increasing dose. He may or may not agree. But, I am comfortable with his plan to stay the course for three more month since it is consistent with both of your opinion.

Ray

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#5 TeddyB

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203 posts

Posted 25 April 2013 - 01:45 PM

Good luck ray, keep us updated.

Sorry you didnt get the results you were hoping for, but 0.05% is as Trey says, basicly flat, and its good to know that its common for Tasigna to plateau abit around the 1 1year mark

Teddy