Posted 19 December 2014 - 12:50 PM
I haven't posted a lot recently, just kind of lurking I suppose. I had an appt with my onc today and had some strange numbers for me. And as usual, whenever something is out of the ordinary it really stirs things up
So as a history I was dxed Jan 2011. High wbc, don't remember platelets. Started Tasigna in Feb and was PCRu by Sept 2011, about 8 months. I've maintained that ever since with margin of error/noise.
Switched to Sprycel in Feb '14 because Tasigna was giving me some arrhythmias including a-fib with rapid ventricular response. I've maintained PCRu (although we did a test for that today that I'll know about soon).
Thing is, today my platelets were at 98. WBC were good. Obviously that's pretty low. I checked and I've had two blood draws, aside from today, since starting Sprycel. Platelets on both meds always hovered between 150-180. So I'm not sure about today's results. I'll do a cbc in two months. But a drop from 160 in Aug to 98 today seems steep.
I have removed grains from my diet since August due to digestive issues, I'm wondering if I'm missing out of some fortified vitamin benefits or something. A long shot, but hmm. Or maybe it was just an errant sample? Does anyone have any ideas? Thank you.
Posted 19 December 2014 - 04:15 PM
The first thing I would do, if it bothers you, is to have them run platelets again. It could very likely be an error. Also, your platelets haven't tanked. 20 is tanking, 50 - doctors start to worry, 98 is fine for just about anything you want to do, including playing with knives and other sharp objects and running with scissors.
When my platelets dropped below 100 earlier in my disease (I was also on Sprycel by that time) I was told that platelets are very sticky, it's really hard to count them and 98 could just as easily be 120.
In my opinion, removing grains is a great thing to do for any diet. I'm not intolerant I just feel better without them. I doubt that has anything to do with it.
"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>
Posted 20 December 2014 - 02:10 PM
Posted 20 December 2014 - 11:19 PM
11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.
Remain on full dose Tasigna
Major p210 International Scale
Be well, Diane.
Posted 20 December 2014 - 11:36 PM
If you stop bleeding after a cut, you are OK. If not then you probably aren't reading this post anyway, so it wouldn't matter.
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