27 replies to this topic

[0vercast]

Doesn't the disease have a higher risk of accelerating the longer the WBC count remains elevated?

[Trey]

Partly sunny with occasional rain,

If the CML is untreated over a long time (many months or years) then yes.  But a couple weeks, no.  CML develops over a long period of time, and does not advance rapidly in 99% of cases.  We all had CML for a couple years prior to diagnosis.  So a couple weeks is not an issue.

For those who think 250K WBC is a lot, I have read about up to 750K WBC and maybe not even in Accelerated Phase. 

[Happycat]

Or cloudy with a chance of meatballs?  Sorry, I read too many kids stories!

I had a WBC of 43K, took only gleevec, no hydroxyurea or allopurinol. The onc said that since my WBC wasn't that high, I didn't need the allopurinol. But I have often wondered if the lack of allopurinol is why I had so much joint and bone pain in the first few months. I know everyone gets the pain to some extent on TKIs, but I suspect the allopurinol would have moderated that a bit.

I agree that hydroxyurea is a crude axe to use on CML, especially when there are so many fine TKI scalpels out there.  I can understand the hydroxyurea if your counts are getting high enough to raise your stroke risk, etc., but absent the need, I wouldn't want to take something that kills off healthy cells, too. Kinda like throwing out the baby with the bath water, isn't it?

Traci

[0vercast]

Alright, thanks again for the reply.  We all had it for a couple years prior to dx!!  Scary to think about.  I can only account for about 7 months, when I experienced symptoms that in hindsight...  It must start very slowly, because once the WBC get into the hundreds of thousands, I can attest to the fact that it increases VERY quickly.  Like I said in an earlier post, it took just 4 days for me to go from 250k to 350k.  I just wonder how long it would have taken for my WBC to drop on just a TKI, since it just crept downward while taking a double dose of Hydrea and a 1.5x dose of Gleevec (4000/600mg).

[Trey]

The CBC showing an increase of 100K in 4 days is not an accurate view of the progression.  Given those two data points you would be tempted to conclude that it is a linear acceleration that would result in adding 100K every 4 days, so that in 2 weeks it would have been over 700K.  The reality is the WBC goes up and down continually, and is different from morning to afternoon every day.  A week later it might have gone from 350K down to 175K, or even less.  Two points do not enable straight line projections.  The body does not sit idly by.

[lindacarriere]

Well, unfortunately, we don't have the labs back yet to confim what phase he is in, but his WCB's are down to 51,000.  He has cut his dose of Hydro in half and is still on the Allo for now until the results are back and can prescribe the proper med.  I asked why not start on Gleevec right away, but there is a strict protocol here in Quebec (confirmed by the Regie here) that he is not allowed to prescribe it until he has the labs back.

I did get copies of his bloodwork and am glad to have that information in hand.  I am thankful for the feedback on low counts from all of you and will watch for signs of this before our next appointment (22nd).  We have a nurse that we can call at any time with any questions or concerns, so I know I can get him in right away if I feel anything is not going right. 

Currently, the only ill effect he is having is pain in his knees.  Trey, I do understand your concern about the Hydro.  And although I respect your opinion, I cannot imagine at this point just standing back and doing nothing.  The risk of a long term low count is there, but for the mental health of the patient and short term control of the WCB's I can't argue with this course of therapy for the mean time.

[GerryL]

Hi Linda,

Probably similar to Australia - the government subsides it so they want all the boxes ticked first.

[TeddyB]

I was only put on Gleevec and allopurinol with a wbc of 270k, i was on allopurinol for 4 weeks, then the onc said i could stop taking it.

Got my wbc count down to normal in about 3-4 weeks time, no joint or bone pain, probably because of the allopurinol i take it.