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#1 AmyH

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Posted 11 January 2012 - 01:14 PM

Hi everyone! 

I had some more blood work today and my platelets were good, red blood cells up to a 10.7 (only a 7 a week ago..)...but my white blood cells are still up in the 200,000 range.  In the hospital they dropped down to the 100,000s with the first drug (the drug they gave me when they weren't quite sure I had CML but suspected it...not sure of the name..) but since on Gleevec its been in the 200,000's.  I've been on Gleevec for 5 days.  I don't have another blood test until next Wednesday and he said if it didn't show any improvements we will talk about either upping the dosage or switching drugs. 

Suggestions?  Is this normal? 

I also started taking Allopurinol for 10 days b/c my uric acid was a little elevated. 

I'm pretty much scared out of my mind. 

I'd really love to stay on Gleevec since my side effects are not bad at all. 

Thanks everyone!


~Amy



#2 CallMeLucky

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Posted 11 January 2012 - 01:46 PM

This is almost identical to a post from a few days ago from someone else.  I don't know what it is with these doctors and this idea that things are going to get better overnight.  You've only been on the drug for 5 days.  NCCN guidelines call for complete hematological response, which means normalized blood counts, by 3 months.  Give it some time.  You were probably taking hydroxyurea, which was killing all the wbc indiscriminately.   Gleevec is only going to kill the leukemia cells.  So give it some time, over the next couple of weeks you should see the numbers start to come down.  If they don't by all means switch to something else, but at least give it a few weeks and your doctor should not be scaring you.

Oh and if you find the post from the other person you will see that the next week after the post, the counts started going down again.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 AmyH

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Posted 11 January 2012 - 02:26 PM

Okay,  I thought I had read that a few days ago, but I didn't see it again.  Yah, it was hydroxyurea. 

Thank you!



#4 pamsouth

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Posted 11 January 2012 - 02:33 PM

AmyH,  I have a hard time keeping up with all the different post too.  so much information.  Sometimes I try to go back and reread the post or the original, but not always have the time.  I think sometimes I keep repeating myself because I forget which sight I posted on and don't often take the time to go back and read or know if the person I have written to is following my post.  Also someone will bring a subject matter up again that is swirling around my head,

It gets confusing.

PamSouth


PamSouth


#5 Judy2

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Posted 11 January 2012 - 03:09 PM

Hi Amy,

My situation is kind of long so I don't want to bore you with it but after I had been off med. for about 3 weeks my wbc started to go up again, to about 29,000 so I went back on Gleevec. After I was on Gleevec for 2 weeks my wbc went up to 50,000 but one week later it was down to 11,000. Like everyone says, give it time. My uric acid was also up. Last spring when my uric acid was up I ended up with a uric acid stone so I went on Sodium Bicarbonate and the stone dissolved in about 2 months. I know things are scary but hang in there.

Judy



#6 Trey

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Posted 11 January 2012 - 05:29 PM

You should give it about a month before making an evaluation of initial Gleevec performance.  CML is not like a mechanical device that can be stopped by a flick of the switch. 

But taking higher initial dosage is always an option whether there is a reason or not. 



#7 tiouki

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Posted 12 January 2012 - 03:14 AM

Hello Amy,


In this post there is someone in the same situation, you have to wait a little longer (because stopping hydrea will AT FIRST increase the counts, I copy you an explanation I wrote in this post) :

http://community.lls...e/128896#128896

"Actually you have to consider that hydrea acts like a spring that decreases cell production. When you stop it immediately the cell counts increase.

That is why at diagnosis doctors usually wait until WBC decreases below 100 000. Gleevec and other ITK do a great job but they are slower to act that's why hydrea (faster) is used at first to decrease WBC when it's really too high (like your husband, 250k (I had 400k)). Usually when ITKs start the counts increase for the reason I explained (the spring thing). It should increase for few days then start to decrease due to gleevec.

In my case for instance I had went down to 25k with 2500 hydrea for 3 weeks (It's a higher dosage than your husband you should consider that, maybe 1000mg a day is simply not enough as WBC count is very high). I then started sprycel and my counts increased to 55k after 10 days (where you are now), then started to decrease to get back to normal range 5-10k.

So there is absolutely no need to worry your husband counts will get back to normal soon I am sure "

So no need to be scared it's totally normal wait a few days/weeks and counts will go down



#8 valiantchong

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Posted 12 January 2012 - 05:37 AM

Base on normal response, most people will response in 3-4 weeks time. Just hang on there... I believe at the end of 3rd week your WBC will come down to 10K.






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