8 replies to this topic

[nobhill]

Hello everyone.  I was dx'd in January 2008.  My WBC was never all that high - I was dx'd after a regular yearly physical.  In 12/08 my WBC was at 45. My fish test showed 86% abnormal cells. By June, 2009, my Fish was down to 1% abnormal.  However, my WBC after initally dropping back to a respectable 10, has since risen everytime I go to the doc, though not by a lot:

12/8 45

1/06 37

2/09 10.2

3/26 12.2

5/07 13.8

6/18 13.6

9/30 15.0

My doc does not seem at all concerned - so I guess I'm okay - but I know the doc only has one other patient with CML and I'm wondering if I shouldn't be seeking another opinion. That said, I feel fine, so maybe I'm just being paranoid.  Anyway, if anyone else has this pattern, it would be interesting to know if your doc is as unconcerned as mine.

Thank you very much for any input and thank you all for just being here when I first found out about this - I have read the responses to other newly diagnosed folks and your insights have been greatly appreciated.

[Trey]

The slowly rising WBC trend is somewhat unusual, and should not be completely ignored.  But CML treatment guidelines say that the more important indicators are your PCR (or FISH) results.  If the PCR is on a declining trend, then a slightly high WBC could simply be somewhat normal for you as an individual (did you have any CBCs before you had CML?).  Also, that slightly elevated  WBC would not be something you could "feel", so that is not a very useful indicator.  If you want to post your PCR results we could look at them.

[nobhill]

I hate to admit it, but I don't really know my PCR results.  If it weren't for this website I wouldn't even know that such things existed. My doc shared the FISH results in June, we all cheered and I haven't seen the doc since. (I have seen the PA and she tells me my CBC results.) I"m supposed to go back in early January; I think I'll have a lot more questions this time.  Thanks again.

[Trey]

If it were me, I would get a PCR done now.  You cannot allow this CML stuff to get away from you.  I would also get a new Onc if the current one does not care enough to ensure proper monitoring.

[squirrel]

Hi Nobhill,

Your comments prompted me to post--normally I just read. I have learned so much from everyone here. Your doctor/P.A. relationship reminded me of my own. I checked your zip code and you live in the same town as me! I wonder if we have the same doc. Please email me directly and we can chat and maybe even meet!  I was diagnosed in October of 2006 and have had ups and downs from side effects on G but am doing OK. My thoughts about your WBC would be that you may have a secondary infection going on--have they ruled that out? If that's not a possibility, I would definitely do another bone marrow aspiration and get both a FISH report and a PCR. I wouldn't trust doing it from peripheral blood.

Take care!

lopez4630@bellsouth.net

[RJF]

I am also having problems controlling WBCs

At diagnosis, my WBC was at 44.3.  I started at 400mgs of Gleevec and it appeared the counts were going to reach the normal range.  They bottomed out at 6K, but over the next few months it started creeping back up to just over normal (10.3 to 13.0 for the most part).  My onc increased my dosage to 600mg and this hasn't changed much, as I am still floating just above normal for the last 3 CBCs.  I wish my onc would have waited until the latest PCR before he bumped me up to 600.

PCR Results -

At Diagnosis - My first PCR was only qualitative and I now wish I would have questioned that.  It obviously tested positive.

3 Months (on 400mg) - .043:  Since the Quest Diag. (non-treated CML) PCR average is 4.1325, they used this for my log reduction (2.9).  (Comparing apples to oranges, but still positive news)

6 Month (on 600mg for the last 6 weeks) - PCR Negative.

I am please with the results, but I can't help to think I could have achieved this without increasing dosage.  In retrospect, I wish I would have asked him to wait.  Tomorrow, I have an appointment and will get my first CBC since hearing about the PCR negative.  If WBC are still only slightly high, I will ask my onc to go back to 400mg.  To support my request, I was able to go back and find some old CBC from well before DX.  They were at the high end of "normal".  Maybe "normal" for me is a little right of center.

RJF

[nobhill]

Thank you, RJF, for sharing your experience.  I am in no hurry to increase my Gleevec dosage if it can be avoided.  Good luck with your next CBC.

[RJF]

Nobhill -

Yesterdays CBC still showed my WBC as high (12.0), but my Onc allowed me to go back down to 400mg.  He agrees my WBC may be "normally high", since 600mgs wasn't doing any better.  As I stated in my last post, I checked my pre-CML bloodcounts from the last few years: (3/07 - 9.8, 4/08 - 11.9).  Maybe we are both pre-programmed to be slightly elevated.

600mg was tough for me - glad to be back.

Good luck to you as well and keep us posted on how things go.

RJF

[nobhill]

Congratulations on lowering the dosage! Hopefully, this will make things easier for you. I'll let you know how things go.