13 replies to this topic

[Calvink669]

Hi, I am new the group. I was DX with CML (CP) on October 22 2013, just a few short weeks ago. It has been a whirl wind to say the least and took a bit to get over the initial shock.  The information I have found here has been invaluable in learning about this disease. Anyway I went to my DR because not only had I been run down for the last year but I was not eating. (Feeling full after a few bites and had lost about 30lbs). So my blood test showed my WBC to be 550K and my kidneys were a bit stressed along with some low electrolytes. Long story short, I was put in the hospital for a couple days to get things under control  and released with my WBC at 350K + then went not sprycel right away. Just had two week check up and WBC is 40K and I feel better than I have in a long time (even started running again). Oh my PH+ test was 100% and initial PCR was 147%.  The reason I started this thread (other than to introduce my self) was in my reading I've never seen anyone mention WBC as high as mine and just wondered where everyone started at?  Thanks for all the info that is here, it has made learning so easy.  BTW I am in Chicago and goto the Robert Lurie Comprehensive Cancer Center.

Thanks for all the replies in advance and best regards,

Tim

[Marnie]

Hi, Tim. . I'd have to check my records, but I think my highest blood count was around 360K.  Glad to hear that you are feeling better.  It's hard to believe when you are first diagnosed, but life will eventually get back to normal, although a slightly different normal than you had before.  After 3.5 years, I am to the point where I no longer get uptight about bloodwork and oncology visits.  Life goes on.  I am very active with kayaking, motorcycling, snowboarding, teaching.  Medication side effects are annoying, but not life changing. 

All the best,

Marnie

[Trey]

The highest I ever saw someone with CML mention was in the 750K range.  500K is pretty thick blood.  You are definitely in the upper few % WBC at diagnosis.  Average is probably between 100K and 200K at diagnosis.  And your PCR was well above 100%, with 100% being the average at diagnosis using International Scale.  But generally, as long as the leukemic cells did not gain certain genetic advantages prior to diagnosis due to the delay in diagnosing you, the TKI drugs should work just fine.  But it will take a little time to see how things go.  It is good news you were diagnosed in Chronic Phase, and that Sprycel is working well so far.  So far, all is going well.

[0vercast]

250K at dx, and in the 3 days prior to beginning treatment, while they were trying to determine whether I had CML or AML, it shot up to about 290k. That just goes to show how fast these worthless WBCs are produced.

How big was your spleen? I imagine it was massive.

[mikefromillinois]

Hi Tim and welcome.  I'm in the far west suburbs of Chicago.  Diagnosed in the summer of 2011 with a white count of about 225K.  On Sprycel since August of 2011 and it has been knocking the CML into the dirt ever since.  I too lost about 30 lbs leading up to diagnosis.  My doc said it was likely because my spleen was crowding my stomach.

I think you are in very good hands at Northwestern.

Here's wishing you good health and many happy days...

Mike

[MACELPatient]

Not CML(CEL) but my white count was ~64k.  88% Eos. 

[Calvink669]

Mike,

My spleen was very enlarged and the cause if my eating problem! Btw I live in the south loop (Michigan and 13th rink across from soldier field. Such a blessing to be able to get on a bus and go a few stops and be at a top rated cancer center!

[td1961]

650K on 9/11/2003 @ DX

6 years on 800 mg/d Gleevec

2.5 years on 50 mg/d Sprycel

1.5 years on 450 mg/d Tasigna

PCRu 

What a long, strange ride it's been! TracyD

[hannibellemo]

Welcome, Calvin,

I was 348k at dx Dec. 2008, 1.25 million platelets and a "markedly" enlarged spleen.

9 mos. on Gleevec, liver toxicity

2.5 years on Sprycel, 100mg. - pleural effusion

ongoing Sprycel, 50mg.

currently MMR

Pat

[Mschmidli]

Hi Calvin

My WBC was 41k at the time of my diagnosis.I was diagnosed in April 2013. Have been on Gleevec since then. My test results from 3 months ago showed I was down to 2.25%. Will get my latest results this week. Glad to hear you are feeling better. The mental part was the worst for me--was hard to wrap my brain around it. But as time goes on and my numbers go down I think about it less and less.

[ChrisC]

WBC 459k at dx Oct. 2008, very enlarged spleen, lost 30 lbs. in preceding two months.

Leukapheresis for a week, 2-hours-a-day, to bring WBC down to 121k, then began Gleevec.

Gleevec on and off for seven months, lots of side effects.

Sprycel begun in May 2009; surprisingly, reached PCRU in Sept. 2009. PCR test has remained 0.000 ever since.

Ceased Sprycel Sept. 2011.

Still PCRU over two years later, still without medication.

Lost lots of hearing, and energy, but am so glad to be okay!

All the best to you and everyone,

ChrisC

[nia.435]

Hi Tim

I was dx July 2012 in CP. My WBC was at 600k and I had a massive spleen stretching past midway of my stomach.  My Ph+ was 100%. I also had additional chromosomal abnormalities due to late diagnosis. I was also in hospital for 8 days on hydroxyrea to pull my WBC down.  Then I was on Gleevec for 12 months, but had to swop to Sprycel as I did not get CCyR at 12 months on Gleevec.  I am now on Sprycel 100mg for nearly 3 months.  I started reading the posts on this forum, and like you, I also never saw many people with WBC's as high as mine. Tim, I am glad you are feeling beter.  This is a wonderful site with much good advice and encouragement!

All the best,

Vanessa

[Cathy]

Hi Tim

DX 5/10/2010 350 WBC at highest , very enlarged spleen, Gleevec 9 months, stop working counts up, Tasigna 5 days, (pancreatis) off a while then sprycel 100 for 9 mth or so I think , then sprycel 50 for 1 year or so then counts were jumping up , so now sprycel 70, doing okay not MMR yet after a little over 3 years but  I am very close. Someday I hope! ! LOL

Stay strong its a roller coaster, but it all works out,

Take care

Cathy