2 replies to this topic

[mck_001]

I can't believe I'm coming up on my 4 month anniversary since my diagnosis.  I had my 3 month post-Sprycel bone marrow aspiration yesterday (WOW....Sue and Rodney at MD Anderson truly do pain free procedures!  I'm not even sore today, the day after and spent 4 hours sitting in the car to drive home after the procedure!)  Anyway, yesterday I saw Dr. Cortes and he seems pretty hopeful that I'll have reached CCyR by 3 months on sprycel.  His optimisim makes me very nervous because now if I'm only at 35% FISH or 50% FISH, I'm going to be disappointed.  I'm really praying they can get a PCR score on me.  They were unable to get that at diagnosis and told me it was either their machine error or I have a mutation which keeps them from being able to measure it.  Let's pray for the former!!!

My ANC was 2.2!!!  And my WBC was 4.1!!!  However, my platelets are double dipping after climbing back up finally to 130 two weeks ago.  Now, they're 100 and I'm nervous they're going to start their descent again.  My pattern has been that my WBC and ANC are always a couple of weeks behind my platelets....meaning that they finally got to normal a couple of weeks after my platelets reached almost normal, but now that my platelets are dropping, if my ANC sticks to my pattern, I'll expect it to be getting lower in a couple of weeks.  Has anyone else  noticed a pattern like that with their counts???

I'm having a sonogram on Tuesday with my local ob/gyn to check for fibroid tumors to see if that's the cause of my frequent periods and we are discussing options (non-hormonal and no IUD options) to figure out how to keep me from having so many periods.

[Tedsey]

Well, my experience has been a little different.  I dropped to PLT 22,000 and holding in that range after starting Sprycel (but all my other counts have come up a little---I'll take what I can get).  However, I was only in the 40s on Gleevec.  I am living OK at 22,000, but no contact sports.  I am sure your doctor went over the signs of bleeding if you get lower.  They are black, tarry stools, or bloody stools, bloody nose, easy bruising, gums bleeding, trouble clotting from little cuts, fever.  If you don't get any of these, you should be OK if you go lower.  So, no need for excessive worry (I freaked out enough after dx when I went very low, so you don't have to bother--I have enough anxiety left over).  My onc does not transfuse unless a patient is around 10,000 or shows signs of bleeding.

Best of luck at the OB/GYN.  I am having the same problems.  I am due to see my OB/GYN for my yearly anyway.  So, I should see one too.  Let me know how things turn out.  Thinking of you and your beautiful children.

Teds

P.S. It is so nice that Dr Cortes is so positive.  What a breath of fresh air.  My last onc was all gloom and doom with me.  She told me I was in late-stage chronic phase (whatever that means, but I have seen it written in research reports).  She said we would stay on Gleevec, no matter what, skip all second tier drugs and go straight to transplant in ten years.  I have written this before.  Sorry to repeat myself.  But I am very concerned that some oncs push SCT when they may not be necessary.  She was a stem cell transplant doctor.  So, I guess she is a strong believer.  She also seemed to be a little of a sadist.  Glad I am rid of her.  Dr Cortes sounds very compassionate.  Glad you are with someone good.

[scuba]

Dr Cortes told me the same thing (his fellows anyway) - that on Sprycel, they expect cytogenetic remission after 3 months.   It is interesting that he wants to keep me on Gleevec while my counts are low until they start climbing again - then the switch.

The Key is to stay on the TKI - let it work and use other means to combat the low counts.  My other Onc took me off for 3 weeks and Dr. Cortes would not have done that.  Needless to say - Jorge is primary now.