4 replies to this topic

[alc999]

Hi all. I'm hoping for some feedback...

 

I was diagnosed at the end of January with a BCR-ABL of 195% (WBC 220,000, FISH 20/20), and started on Gleevec 400 mg in early February. Now after 3 months, my BCR-ABL is down to 16% (and WBC down to 3,200). My Onc says he's not terribly worried, but that if I'm not down to .01% at six months (when we do a BMB for PCR, and FISH) he's going to consider switching my drug.

 

Has anyone else had their PCR results go down this slowly, and what was your eventual outcome? It seems that I keep reading about folks hitting .01 at 3 months. But has anyone's results gone slower but still hit the target?

 

I'm religious about taking my Gleevec, and haven't missed doses. I have struggled with side effects (muscle/joint pain, nausea, fatigue, very bad rash), but have now come out the other side with all of them. I am nervous about switching, but of course, want a better result.

 

Thanks so much,

Alissa

[snowbear]

If your PCR was indeed 195% (and not 19.5% ??) at diagnosis, I would say you've made tremedous progress.  My PCR only went down by 2% in the first 3 months - from 22.5% to 19.5%. 

 

My Onc has always told me it will take up to 18 months to achieve 0.01% and that some people never make PCRu.

[alc999]

Thanks Snowbear. My PCR really was 195% on the international scale. Very high, I know. I'm still unsure what it really means and how it could have been greater than 100% though.

[Trey]

alc,

Your Onc has unreasonable expectations.  Most do not even get to MMR (.1%) in 6 months, let alone .01%.  Even getting to MMR in one year is a fast response. 

[scuba]

Hi all. I'm hoping for some feedback...

 

I was diagnosed at the end of January with a BCR-ABL of 195% (WBC 220,000, FISH 20/20), and started on Gleevec 400 mg in early February. Now after 3 months, my BCR-ABL is down to 16% (and WBC down to 3,200). My Onc says he's not terribly worried, but that if I'm not down to .01% at six months (when we do a BMB for PCR, and FISH) he's going to consider switching my drug.

 

Has anyone else had their PCR results go down this slowly, and what was your eventual outcome? It seems that I keep reading about folks hitting .01 at 3 months. But has anyone's results gone slower but still hit the target?

 

I'm religious about taking my Gleevec, and haven't missed doses. I have struggled with side effects (muscle/joint pain, nausea, fatigue, very bad rash), but have now come out the other side with all of them. I am nervous about switching, but of course, want a better result.

 

Thanks so much,

Alissa

 

Hi Alissa,

 

Here are the NCCN guidelines on treatment and expected response rates. I link to page 50 - but reading other pages is informative.

On page 50 is a chart 5.3.2 that describes what to expect and when it is expected. This should help put where you are in perspective. You are doing quite well where you are currently. It's possible that new guidelines may emerge suggesting a faster response is expected given the newer drugs. But the now "old" standby Gleevec still has a terrific outcome if its tolerated well. It may not be as fast, but it does seem to be as deep.

 

http://www.nccn.org/...l/index.html#50