6 replies to this topic

[scuba]

In February of this year I stopped taking Sprycel (20mg) in order to test low residual durability.

My PCR was below quantification (i.e. < 0.01%), but still considered detectable. Some reports gave Undetected, some gave <0.01% (M.D. Anderson does not report more than two decimal places).

 

Over nine months, my PCR remained the same for the first several months but then started to show up and down PCR's. The last one before I restarted approached MMR (one log increase). I decided to resume Sprycel at that time (very low dose) to test if my PCR would fall back. I am pleased to report that my PCR has indeed fallen back to barely detectable (<0.01%) agaom. It took nine months for my PCR to rise and only two months on the same dose to drop it back. 

 

As important, my bone marrow shows normal trilineage hematopoiesis (blood making) and no signs of CML (but with depressed red cell formation (Sprycel gives me mild anemia even at 20mg) and no blasts.

 

The good news is that stopping and re-starting Sprycel, in my case, was no big deal. I will try cessation again - and again and again until it sticks (I believe that Leukemic stem cells burn out over time). I will wait, however, until I am "undetected" for a period of time before trying again. Or I might go one month on - one month off. 

 

Trey: I don't know about the Trisomy 8 yet. Cytogenetics is pending.

[Frogiegirl]

Thanks for keeping us in the loop Scoobs!  Very Nice. I am considering dropping my dose as well, the 600mg of tasigna is hitting me hard with the side affects. Just had my 3rd PCRU and am told I need to go two more(6months) of PCRU then stop Tasigna and try for our last baby.....I am so tempted to go to 400mg daily just for a few weeks and see if I can get some relief from the fatigue and joint aches...oh and the onryness......might just be the stress of the holidays...because really I'm a gem to be around  (sarcasm)

[scuba]

Thanks for keeping us in the loop Scoobs!  Very Nice. I am considering dropping my dose as well, the 600mg of tasigna is hitting me hard with the side affects. Just had my 3rd PCRU and am told I need to go two more(6months) of PCRU then stop Tasigna and try for our last baby.....I am so tempted to go to 400mg daily just for a few weeks and see if I can get some relief from the fatigue and joint aches...oh and the onryness......might just be the stress of the holidays...because really I'm a gem to be around  (sarcasm)

 

Jessica - It's interesting that I was able to stay off Sprycel for nine months. Isn't that how long it takes to make a baby? 

[Frogiegirl]

Scoobs your observations never cease to amaze me!   Yep 9 months indeed.....that's all I need.....any longer would just be an extra bonus...minus the baby ofcoarse!  

[nsharavana]

hearty congrats my friend..god bless

[mdszj]

Very nice - you will get there eventually.  I like your idea of the bad cells eventually dying off.  Last week I reduced from 100 to 80 S, but that is probably still overkill for the cml cells.

 

I called a few weeks ago about the LAST (Life After Stopping TKI) trial, they said I would be eligible in Oct 2016.  Even tho I have been pcru since Oct 2013, I had a brief rise above detectable last Oct, then back to pcru.  Unfortunately this makes the clock start over to get the minimum 2 years pcru requirement.  In the meantime I am hoping that Univ of Penn where I see my specialist, opens up this trial so I dont have to take the train up to NY, the next closest place.

 

Merry Christmas!!

[Dom]

Scuba, does your onc advise you in this? Or are you doing it on your own? My onc advises against this type of stopping and restarting. He says I run a risk of losing responsiveness.