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the numbers jumping up and down

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#1 Cathy


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Posted 10 December 2014 - 02:33 PM

Hi, after 4 1/2 years you would think my numbers would be more stable they've been going up or the past three test. 6 weeks ago they were .4962 the new ones are .5982 almost .6! So needless to say getting up this high I'm starting to panic. I know they are just jumping around but they haven't been this high in a couple years. I've never reached MMR yet.


So they were going to send me to Cleveland Clinic but we are going to do a mutation and bone marrow test first and see what is shows. I had my sprycel increased to 70 mg a year ago because numbers were going up.


What is wrong with just going along and being boring.


Has anyone numbers been this high and no big deal after being on TKI for a couple years ?


Thank you ,





DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!


#2 Trey


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Posted 11 December 2014 - 04:40 PM

You were almost MMR at one point.  If the next PCR is as high or higher I would look at another change in drugs.  You previously said you have a 3-way translocation.  The Onc told you it does not affect things, but it can in some cases, possibly making the patient a slow responder.  So if the next PCR does not improve I would explore options for Iclusig (Ponatinib) or maybe Tasigna if you never tried it. 

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