Just saw the oncologist for the 2nd time for my husband who was diagnosed with CML in July; His WBC was 117 and after 3 weeks of Gleevec, it's down to 12.5! His spleen seems to still be enlarged through? Did anyone else have the quick response to WBC count but have it take longer for the spleen size to go down?
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WBC count dramatically reduced 3 weeks on Gleevec
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Hi
I am 38 and was diagnosed in March. My WBC was 330! And I had an "Enormous" spleen according to my consultant. I was firstly put on Hydroxycarbomide for 3 weeks which finally got my WBC down to 14.1. Then I started Nilotinib (Tasigna) and that got all my counts including my platelets and HB all within range within 3 weeks and the WBC was around 5.3 and whats known as a Complete Haematological Response. My massive spleen was gone by my next checkup which was about 5 weeks after starting Nilotinib. When I got that news it was such a relief to finally hit the first step of this journey. I kept feeling my spleen everyday to see if it was going down and thank goodness it did. I had days when I wasn't sure and I began to question myself but he'll know when it does everything feel so much looser and softer and less compact in that area. Lets hope it never returns :-)
All the best for your husband and his treatment
Alex
My spleen was palpable 14cm below the costal margin (bottom of ribs). I'm not sure where that figures on the scale, but certainly fairly large.
My clinic notes show that it took 4 weeks for the tip of my spleen to revert back behind the costal margin, and this is certainly in line with my memory that it took about a month to 6 weeks before things felt fairly normal there.
However, I did take hydroxycarbamide for about a week before starting on my TKI. Perhaps this makes a difference in the speed of spleen reduction.
David.
It took forever for my spleen to get back to normal - at least 3 months. I'm now almost three years in and still have discomfort in the spleen area. So don't worry! It is normal for this to take time.
My spleen was normal, any idea why?
I think it’s good news when you don’t have an enlarged spleen. No spleen enlargement means your CML should be easier to treat ( or at least this was considered the case before second gen TKIs were developed)
As my husband had an enlarged spleen his oncologist wanted him to start on a second generation TKI.
I am not sure if spleen enlargement is also related to how high your white blood count is at dx. Paul’s was over 200k .