4 replies to this topic

[Lori's okay]

Hi all,

Just got my results: 

ZERO FISH

PCR went from 8% at dx to 0.054% !!!

I have been on Tasigna, and have had to lower dose due to blood levels too low for a while.....so this has been achieved with 5 weeks at 600mg a day, then 6 weeks at 300mg a day (my heavenly half dose), then now 450mg a day for the last 6 weeks! (that's 2 weeks of 450 prior to blood draw)   I was so concerned that results would be affected by the lower dosages!!

Just had to share with you all, this forum has been wonderful to go to.  I think of you all often.

Here's to low numbers for us all!!!

Lori

[rjmeistro]

I AM so Happy for you!!  It sounds like this is outstanding results.

I am a layman when it comes to FISH.  Please explain what the numbers mean. 

[pamsouth]

Congrats on the quick response.  You went on Tasigna Dec 2011, right?  Just wondering what kind of side effects on the 600mg.  What were your numbers when diagnosed?

Thanks Pam

[Usurugger]

Absolutely awersome. Hoping I have the same results on sprycel. Started on 2 April and counting the days.

[Lori's okay]

HI Pam, 

Yes, I started Tasigna Dec 2011.  I'm glad you asked about sides as I've wanted to write a discussion about that....one I wish I could have read early on as I worried so about starting these meds.

I wish I could have believed all the people who say that side effects really do subside after a while!!  They do!!  My first four days were awful, with very red face, pounding pulse.  Could barely sleep.  Doctor said to go off for a few days, then went back at full dose and was still tough but not as bad.  Over the weeks at full dose face rash continued, my skin hurt to the touch, and scalp oh so tender, would cry when I brushed my hair.  Also VERY tired.  Could not be away from home for more than 1 1/2 hours at a time.  At half dose was like having life back completely!  At 3/4 is ok.  Rash barely noticeable.  Fatigue is there but not nearly so bad.  I so wonder how much of what seems to be initial "side effects" is actually the effects of the process of killing off the bad cells and having to regrow the healthy ones.  Anyway, I'm finding this dose really tolerable now and during those first four days would never have believed it could get this much better!

Also, you asked my early numbers, my highest WBC was 18,000 so I think I was caught early.  Did not have FISH at dx but cytogenics were 15/15 or 100% BCR-ABL.