Re: Re: Starting with Hydrea vs Gleevec

[Guest guest]

My impression was they use hydroxyurea until they get the cytogenetic

test result to confirm cml dx. When I was dxed in 2005 the test took

12 days to get back and I was on hydroxyurea during that time and it

wasn't working so well, my WBC was ~250 and still climbing (although

more slowly). When I started gleevec the counts stayed in the 250

range for about 10 days, I could tell the dr was starting to get

nervous, and then it plunged back to normal in a few days.

Marcos.

On Wed, Feb 25, 2009 at 4:43 PM, Tracey <traceyincanada@...> wrote:

> Hi and welcome to the group. Many doctors start their patients off

> with Hydrea because it brings the white count down very quickly. In

> the early days, everyone started out on Hydrea but now with Gleevec

> being front line treatment, I suppose some are skipping the Hydrea.

>

> Tracey

> dx Jan 20002

>

>

>>

>> >

[Guest guest]

" In the old days "   I was on hydrea for 5 years, also Agrilyn (sp) for the

platelets. That was 14 years ago.  Good ole Gleevec came along just in the nick

of  time to keep me alive and kicking, now after 5 trials, I am still looking

for one that will work.  Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

 

From: Tracey <traceyincanada@...>

Subject: [ ] Re: Starting with Hydrea vs Gleevec

Date: Wednesday, February 25, 2009, 8:17 PM

Hi Marcos,

I was on Hydrea for 3 weeks which brought my white count down to

normal but it didn't do anything for my platelets which kept

climbing. I started the Gleevec after the 3 weeks and it took

another 2 weeks after that before my platelets started to fall. My

platelets worried me more than my white count at that time (they were

1.6 million). This of course was 7 years ago. It's possible today

that they don't use Hydrea as readily as in the " old days " .

Tracey

> >>

> >> >

[Guest guest]

Hi Tracey,

I understand the platelets got you worried, I would have been scared.

Well, I was scared even with the platelets at 400k. Were you dxed in

CP or AP ? I think remember platelets above 1M is one of the markers

of AP, although it may be when it doesn't go down with treatment. I am

very glad to know you are doing so well 7 years after dx.

I would think early treatment is very sensitive to the dr experience

of cml, or lack thereof. Also to insurance rules.

Marcos.

On Wed, Feb 25, 2009 at 5:17 PM, Tracey <traceyincanada@...> wrote:

> Hi Marcos,

>

> I was on Hydrea for 3 weeks which brought my white count down to

> normal but it didn't do anything for my platelets which kept

> climbing. I started the Gleevec after the 3 weeks and it took

> another 2 weeks after that before my platelets started to fall. My

> platelets worried me more than my white count at that time (they were

> 1.6 million). This of course was 7 years ago. It's possible today

> that they don't use Hydrea as readily as in the " old days " .

>

> Tracey

>

>

>> >>

>> >> >

[Guest guest]

Hi Tracey,

I don't remember reading something on the mechanism of the platelet

increase, if it comes directly from the cml cells (shouldn't be the

same cell line) or something else, I am curious now, I ll try to find

something.

BTW I just got back from the new hemato, my previous one retired,

that's where we see cml therapy did get better :-). Now it's a young

lady, very charming, that worked on the nilotinib trials, looks like I

am in good hands. She gave me my last PCR result, still positive but

too low to quantify, way in MMR. Now Kaiser lab is able to perform the

test, I was referred to Stanford so far. I will do the test on both

labs at the same time next month to have a baseline.

Marcos.

On Wed, Feb 25, 2009 at 6:04 PM, Tracey <traceyincanada@...> wrote:

> Hi Marcos,

>

> I was in CP when diagnosed despite the high platelets. Although they

> take into account a variety of features (spleen size, platelet count,

> basophil count, age, Hgb count etc), the defining feature for

> determining disease phase was/is blast count. On one smear I had 7%

> but when a larger sample of blood was looked at, that reduced to 2%.

> In those days AP consisted of anything over 5% but now they use 15%

> as the marker for AP.

>

> Your right though, platelets over 1 million was traditionally

> considered a very bad clinical feature. That was because Interferon

> didn't do anything for platelets. People who had platelet problems

> before Gleevec typically didn't fair well at all. Thankfully,

> Gleevec does work on platelets because of the PDGF inhibition.

>

> Needless to say, those early days were a bit worrisome! We've come a

> long way baby

>

> Tracey

>

>

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