4 replies to this topic

[Taylor]

Hi everyone,

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.

[hannibellemo]

Hi, Taylor,

 

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.

 

Pat

[Taylor]

Thanks Pat, I appreciate the info - as usual! I'll just sit tight until two months and see if there's a trend.

Taylor

[Damerault]

My platelet s are at 37 and have been hovering there for months. I am on Tasigna and my my blood counts cannot seem to recover. The good news is my body seems to have adapted to the lower counts. I would watch for bruising, eye bleeds, bloody nose or gums bleeding that could occur if you go below 50. In the 90s is a good number. Good luck and don't worry, your body will adjust.

[Trey]

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.