8 replies to this topic

[chrissy778]

I was diagnosed August 2013.. I was put on Gleevec 400mg and have been on it ever since and had great response. Once in May 2014 My Neu # (ANC) was 0.86 I stayed the course and it went back up. Today it is down to 0.97 My Dr wants me to come in next week to check again to see if it goes up... If it does not he is going to give me a break off Gleevec which I never had to have.. I know it is normal to have numbers jump around and the wht count to be low in the beginning of treatment but I am over two years since diagnosis. Three months ago I did reach PCRU but now I am worried my marrow is not making enough good white cells... Could this be a symptom of Marrow failure? Please help...

[Trey]

The main issue is whether your ANC will rise when required to fight infection.  If it does, the low number is not so important.

 

You could lick the bottom of a small child's shoes and see if you get sick.  If not, then you are fine.

 

Better yet, just see if you get sick in the next few months.  If not, then just forget it.  I would not think a drug break is required, but it also would not harm your PCRU response.

[Melanie]

Trey is right about waiting to see if your ANC will rise when needed. Not sure about the licking of the child's shoe though....😀
I know it's difficult wondering if your numbers are going to make you sick or not and if it has a negative effect on your CML status or your quality of life. So sorry you're having to go through this. If it's any help, I've live with ANC below 1.0 for over 4 years and very rarely has it caused me to get sick, but we all are different.
The drug break will help but probably isn't necessary. Your ANC have probably already recovered and your labs just caught them at a low point. Sometimes they just drop. Try not to let the anxiety get to you and pray next week your labs will show complete recovery. Let us know and Happy Thanksgiving!

[chrissy778]

Thank you both... I will let you know how I make out.. mbrown, thank you, you made me feel better. I guess for now all I can do is wait..  shoe.jpg   410.27KB   0 downloads Happy Thanksgiving also..

[chrissy778]

Ugggh Today I had my results though I am happy to report my White count went up Sadly so did my Pcr from undetected to 0.050 I have to go back in two months to have it drawn again. I already checked and it was the same lab..     So my numbers went from                                                                                                                                                                                                            05-2014 0.155

09-2014 0.013

12-2014 0.054

 02-2015 0.026                                                                                                                                

 05-2015 0.003

 09-2015 0.000

 11-2015 0.050

To say my anxiety is at its worst is a under statement.. The Dr said if it goes up again he will test for a mutation whitch I am guessing bone marrow   and switch drugs... I can not even think straight right now.. Anyone who has had their blood count do this I would appreciate so much if you would write your experience here...Sorry I can not get the top number to align...Also the only thing different I have done was start a probiotic.. The Dr said he doe not think it would change anything but to stop it and see...

[kat73]

Chrissy - I know you are disappointed.  Here's what I see, though (objective, third-party):  I see since September 2014 consistent zeros on the right side of that decimal point.  Yay!  Could you, just for now, accept that as your first and best good thing?  And worry about the next door number for sometime in the future?  Think of this - if you never lost that zero yet never got any further, you'd still be sitting pretty.  In 2009 (back at least that far), the word was that very few people ever obtained PCRU, and the expectation was that you didn't need to in order to keep CML at bay.  We forget that, now that so many people (it SEEMS) race to PCRU in the first year.  I have bounced around somewhat like you - 6 months ago I got PCRU, and then that was followed 3 months later with 0.05.  Oh well.  Sigh.  IMHO, don't be too quick to go have a BMB and go hunting down the mutation rabbit hole - who needs all this anxiety?  I don't know if Sprycel is an option for you, but I know that in my case I was a slow but steady responder on Gleevec, but when I switched to Sprycel things zoomed downward quickly and nicely.  (But, as I said, then I just sort of poked along at a turtle pace, but at least it's at a lower level than before.)  Anyway, all things to consider.  Try and calm yourself about worst case scenario stuff.  The zero is worth holding on to - the rest is noise. 

[rct]

My Mrs was diagnosed in 2006, 800 then quickly down to 400 Gleevec, PCRu in about 18 months.  Around 27 months after diagnosis her wbc/anc tanked.  With very little exception they remain tanked, rarely above anc .8, usually below .5, wbc hardly cracks 2500.  Still PCRu with only occasional exceptions, nothing to worry about there.  But those whites have been a serious problem and we even went out to Portland to see Druker about it.  He wasn't too concerned, most docs aren't, but that doesn't make it any easier on you.

 

Good luck with it, hang in there, PCR down, that's what matters.

 

rct

[chrissy778]

Thank you Kat and Rct... Kat I wish I could hug you thank you for trying to knock sense back into me.. Are you saying you went from 0000s to 0.050 also then back down.. I hope that happens for me.. I am sorry and I know  I sound like a wiener but anxiety effects me terribly and I have myself so worked up as though I was diagnosed all over again... I am so sorry.. I can not explain it, it is awful. Rct glad your Mrs is doing better... My Anc does get very low but thankfully I never had to stop treatment yet... I also have never reached 2500 who would think we would ever complain about a low white count thank you.. Hugs to you also. Kat I will keep re reading your post until make next visit, thank you.

[kat73]

Chrissy - Don't apologize for anxiety overwhelming you.  I think of anxiety as a Maurice Sendak-type beast that I have caged in a dark corner.  Sometimes, if I get too near, a huge paw with claws comes out between the bars and tries to take a swipe at me.  Actually, Sendak's beasts are kinda nice underneath, so there goes that description!  As to the numbers, I have had the kinds of differences between tests you have had, but only once have I had the magical PCRU so far, and when it went back up to 0.05 that one was more in line with where I had been.  So, when I go in for the next one I'm going to try and be prepared for it to be undetectable again OR pretty much the same OR maybe a higher far-right number (.06 or .08 or something.)  Any of those three would be "likely".  I readily confess that if I lost that zero I would not be a happy camper.  And the beast might get out.