6 replies to this topic

[Tom1278]

Today I got my 27 month results and I'm frustrated.  I really thought I would finally achieve a MMR but I didn't.  It's like the slow creep that never ends.

 

Due to my continuing trend in the right direction and my very good tolerance of the drug, there's no change from Gleevec 400mg at this point.

 

Diagnosis - 145%

3mo - 39.7% - 0.4 log

6mo - 5.7% - 1.2 log

9mo - 4.6% - 1.3 log

12mo - 2.3% - 1.6 log

15mo - 0.710% - 2.1 log

18mo - 0.411% - 2.4 log

21mo - 0.241% - 2.6 log

24mo - 0.161% - 2.8 log

27mo - 0.115% - 2.9 log

 

I'm tempted to ask to be increased to Gleevec 600mg but I really am nervous about side effects being a lot worse.  At this point, I only have minor bloating and fatigue.

[LivingWellWithCML]

Slow and steady still wins the race - and you're basically MMR with the margin of error factored into the test.  And assuming you have a good quality of life on 400mg, then life moves on.

 

Congrats on the continued downward trend!

[JPD]

Chill

 

You are doing great.  You have PCR-itis (as we all do) and I understand wanting to hit that benchmark, but you're kicking ass and taking names.  Take a deep breath and enjoy that fact.

[Tom1278]

Thanks everyone.  Yeah, I need to chill.  

 

Being a bit of a perfectionist, and an accountant, I always want the numbers to look right.  But I can't control this as much as I want to, so I need to realize things are going well and let it go.

[Marnie]

I'm a turtle, too.  I used to get pretty uptight about PCR numbers. . .especially when I seemed to constantly see people on this forum reaching PCRu, while I toddled along in a slow downward trend.

 

Hang in there.  You will get there.  I wouldn't recommend increasing to 600. . .quality of life is important.  Gleevec side effects can interrupt life. . .at least they did for me.

 

Good luck!

Marnie

[chriskuo]

You are at more than a 3 log reduction from diagnosis.  Given your trend, you are doing great.

[everonward]

Hi Tom

 

I too am a turtle - took me about 3 years to get to MMR and now 9 years down the line my numbers come in at around 0.005%. Hospital on Weds for routine checks and PCR so fingers crossed it remains.