4 replies to this topic

[jbinsd]

Hi all,

After Sprycel dropped my WBC count down to 1.6 (and .5 absolute neutraphil count), my doctor asked me to hold on the medication to allow my counts to go back up.  After my neutrphil count went from .5  to .7, it suddenly went back down to .5 over the span of 10 days-ish.  All my other blood counts are marching up as expected to more normal ranges (HGL, RBC, platelets, etc.).  I have a feeling that I'm more concerned than I should be because I'm getting labs twice a week - and getting too wrapped up in the lab-to-lab results rather than seeing the bigger picture.  What I'm wondering is if this is a common experience when first starting Sprycel?  I know it's not uncommon for the values to drop and having to then calibrate to taking the drug, but I'm wondering why my WBC count would not be moving and actually dropping despite having been off Sprycel for 10 days.

- jb

[Trey]

The dynamic is a changeover from the leukemic WBCs to the good (non-leuekemic) WBCs.  It can take a while for the changeover to be effective.  Actually, the low WBC is often a good sign that the leukemic cells are dying enmasse, but there is often a lag in the good cells catching up. 

A good strategy is to take lower dosage when starting back up.  Maybe as low as 20mg and working back up as necessary. 

[jbinsd]

Right.  I know that is the doctor's plan once my WBCs go back up.  It's just weird because they went up briefly then dropped back down even though I had been off Sprycel for a week.  Meanwhile everything else is going up.  I have my next blood test tomorrow, so hopefully we'll see an uptick.

[Melanie]

It's been my experience that sometimes it can take a month or more for your WBC and ANC to recover.  Don't be alarmed, for most people this is a short term issue and as Trey stated, it takes a while for the good cells to catch up. The twice a week labs are always a bit concerning, but if you've never had this issue before, then they need to monitor your counts more closely to ensure you don't risk an infection. If your ANC continue to be below .5, then some Onc will automatically put you on an antibiotic just to be safe until they know what your body's risk level is. Some people can tolerate low ANC without adverse effects very well, but you won't know that till you've had some experience with it. The lower dose with gradual build up is the best way to start again.

Hopefully by now, you have recovered and all is well.

Melanie

[jbinsd]

Thanks Melanie!

It continues to be an up and down process for me.  I'm down to 70MG doses now and it's looking like things maybe finally starting to stabilize, but I won't know for sure for another few weeks.

That first time it dips low is pretty scary, but now that I've been through it three times, it's like old hat to me.

- joel