5 replies to this topic

[Lori's okay]

Dear Friends,

I don't post often, but I sure appreciate all that you share.

My situation is not bad.  I've responded very well as far as pcr tests go.  Here's a brief recap

DX 10-11

Began Tasigna 12-11

PCR at DX: 8%

By July 2012 pcr 0.035

Sept 2012 PCRU

Dec 2012 PCRU

Apr 2013 0.042

I started on 600mg a day of Tasigna, had a couple of brief times of half dose, then most of this time have been at 450mg.  Then in Dec 2012 side effects just caught up with me too much and doc and I decded to do 300mg a day to see if I could maintain.  I feel human again on half dose. 

So, my doc said on the phone that this is a small enough uptick to not need to make a change.  I am incredibly sensitive to all medications.  The fatigue and dark mental cloud is very difficult even on the 450mg dose. 

If you were me, would you try to go back up?  Stay the course and see if this low level continues?  I fear that I am just barely keeping this illness at bay.

Thanks for any input.  I see the onc tomorrow to talk it over.

Lori

[GerryL]

Hi Lori,

If it was me I'd wait until I had another blood test, remember it is a trend you need to be concerned about.

In the end it may come down to the half dosage not being enough, but I'd still wait till the next test. And remember there are a couple of other TKIs you could possibly try.

[Rdd]

Hi Lori,

I take Tasigna also, July 2011, except 800 mg ever since.  I cannot advise you, only share my experience, hoping to cheer you up.

My diagnosis was 2009, and my test results have been up and down approximately like yours.  Except my fatigue symptoms get less and less over time.  Some days I feel almost normal, and my personal physician is happy with all he sees otherwise.

My layman's belief is diet helps fight symptoms.  I have quit all junky foods and sugar drinks, and am eating nearly no meat. ( I believe a spare, simple diet at least helps minimize chemical interactions with the residues of the medicine.)  When there is fatigue, light exercises always make it better and gives me a little euphoric high.

By the way what is PCRU ?

Cheers.

R

[Trey]

When a person is at such low levels there are many options and no real wrong answers.  You are hovering at PCRU and popping in and out can happen for a while.  But overall the half dosage may not be high enough for you personally to continue your downward trend until an even lower level of leukemic cells is achieved.  The cells you are fighting now are some of the harder ones to kill off since they are higher in the cell hierarchy.

The options could be many, but the main ones might be to either stay with 300mg through the next PCR cycle, or maybe increase dosage on alternating days (300mg/450mg).  You could even just take the increased dosage every three days and see how you feel.  I might try one of the intermittent dosage options if it were me.

[Lori's okay]

Trey,

thank you so much for answering.  I am surprised how much relief I feel to hear your thoughts.  Thank you for all you do on this board!!

Rdd,

PCRU stands for PCR Undetectable.  It means the illness is at a low enough level that the pcr test, our most sensitive, cannot detect it, but that it is not necessarily gone.

Regards,

Lori

[simone4]

Hi, I have experienced the same results recently.  I was dx 1/09 and had to lower

Gleevec from 400mg to 300mg. within 5 months. I achieved PCRU 4/11 and

10/11.  However, in April "the cruelest of months" (to quote T.S. Eliot)  my results

were the same as you- .042.  So now wait for another test in June and see if

there is a trend.  I low dosage of Gleevec may be raised, I don't know.

Even on this lower dose, my darkness is horrible and my fatique is worse.

Sorry, you feel this way as well, but comforting to hear someone verbalize it.

Take care and hope all goes well on your next test.

Simone