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How to discuss dose reduction with my onc?


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#1 Lori's okay

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Posted 14 February 2012 - 07:03 PM

Hello All,

I'm looking for a little advice.

I am on Tasigna, started 12-15-11.  Having good results.  Numbers went a little too low so 3 weeks ago onc put me on half the dose.  I was on 300mg 2xday.  Now on 150mg 2xday for total of 300mg.  I feel like a new person.  Side effects almost gone.  Fatigue from a 7 to a 2, scalp sensitivity from 8 to 2, rash and pain on face from 5 to a 1.  In these 3 weeks numbers flattened out pretty well.  Here's a few specifics:

December:  WBC 18, Platlets 635

3 weeks ago WBC 3.0, Platelets 82, ANC 1.86

Now:  WBC 2.93, Platlets 110, ANC 1.6

(Have yet to get a follow up FISH or PCR.)

So my onc wants me to continue this dose for 2 more weeks with hope of raising it back up. 

Getting to my question:  Seems to me that many specialists in the field are willing to put one on a lowered dose while local oncologists are not.  I did see a specialist for one visit at Hopkins whom I can contact for consultation.  An earlier thread posted a link to a presentation from the 2011 ASH meeting, http://ash.confex.co...Paper44523.html that describes great results from reduced doses on Sprycel and Tasigna. 

QUESTION: DO YOU HAVE ANY ADVICE FOR ME IN MY DISCUSSIONS WITH MY ONC TO HELP CONVINCE HER THAT STAYING AT A LOWERED DOSE MAY WELL BE ADEQUATE? 

Thanks in advance for any help, both in facts and hints on how to communicate.

Lori


DX 09-2011 PCR 8.08 not IS WBC 17 , Began Tasigna 600mg  

in 2012 Tasigna 450mg/day ,in 2013-2017 Tasigna 300mg/day

DATE/PCR

09-11/ 8.08 not IS

03-12/ 0.054 not IS

06-12/ 0.035 not IS

09-12/ PCRU, 01-13/ PCRU

4-13/ 0.042 IS

7-13/ 0.014 IS

11-13/ PCRU, 04-14/ PCRU

8-14/ 0.006 IS

PCRU: 12-14/ 05-15/ 10-15/ 02-16/ 

09-16/ 02-17/ 09-17/ 

10-17 tapered off 

11-3-17 Stopped Tasigna

1-15-18 still PCRU

 


#2 Trey

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Posted 14 February 2012 - 07:43 PM

You were  diagnosed only 4 months ago.  Your PCRs should determine lowering the dosage, not CBCs.  I would not even consider doing it until you achieve MMR (3 log reduction) unless side effects are intolerable at the higher dosage.  First priority is to get the CML under deep control, so staying on full dosage until then is important.  Then consider dosing options.  Again, if side effects are intolerable (not just uncomfortable) that is a different issue.






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