9 replies to this topic

[Marathon]

Hello All

I hope this email finds you all well. Energized, motivated and happy.

Morning meeting this week with my wife (she is the one with CML). Mixed feelings...... see below.

(CML was dx Abr 2012 with 200,000 WBC then)

Doc wants to see her again in 1 month and if no change she will study dose increase or even change of drug.

Now on Gleevec 400 mg. since the beginning. Side effects bearable.

BCR/ABL Results-Evolution

At DX (Apr 2012): 46%

3 months: 6.3%

6 months: 0.66%

9 months: 0.53%

12 months: 0.49%

15 months:  0,24%

18 months: 0.10%

Doc says that after one month, depending on results a decision will be taken on increasing dose or switching to another drug.

Could you please help assessing these results according to your experience?

Thanks for being there.

M

[jjg]

It looks like a nice steady response. Some people respond faster but not everybody can respond faster than average. Doing average with Gleevec is pretty good.

If the results are on the international scale then she has a major molecular response MMR i.e. PCR <= 0.1 which is a very good place to be and certainly something to celebrate i.e. I have no idea what your doc is on about.

As far as I know there is no evidence to show that having a PCR well below 0.1 (international scale) has a better prognosis then hanging out around 0.1. I suspect that in time there will be research to show lower is slightly better but who knows. Anyways in your case she's only at 18 months and things are still headed downwards.

If the side effects are troubling many people do better on the 2nd generation drugs. But not everybody and you will most likely have to go through some startup side effects - I've very much enjoyed my change to tasigna, so far. I'm somebody who doesn't mind change. If it were me I wouldn't go for an increase in gleevec, you probably will see a slightly faster response but also an increase in side effects - at one stage I went from 600mg to 800mg gleevec and there was a very big increase in suckiness.

[Trey]

The PCR results look like they are on the International Scale.  If so, that is a 3 log reduction in 18 months, which is an excellent response, and no change would be indicated.  If PCR results are not International Scale, then ask the Onc what the equivalent "lab standard log reduction" is.  The "personal log reduction" from 46% down to .1% is well over 2 log reduction, and a steady decline.  If the lab standardized log reduction is 2 log - 3 log reduction then all is well.  If Onc does not know the answers, ask Onc why a change is needed since Onc apparently does not understand CML response goals, or how to read lab reports. 

[Marathon]

jjg / Trey

Thanks for your feedback.

It is important to us your opinion.

Trey, yes, the results are IS.

Lt's see what next appointment with the doc brings us.

Will keep you informed.

......... have a great weekend !!!!

M

[Trey]

So your wife has achieved an excellent response, with 3 log reduction and MMR.  All is very well.  Onc is not very well, sad to say.

[Marathon]

Hi to All

In our post a month or so ago, I shared with you that Doc thought that the indicators were not going down fast enough and that he was considering change drug/increase dose (from 400 mg. Gleevec) if in next visit things were not better. Just to remind, the evolution (that you kindly helped us saying that it was good) was:

BCR/ABL Results-Evolution

At DX (Apr 2012): 46%

3 months: 6.3%

6 months: 0.66%

9 months: 0.53%

12 months: 0.49%

15 months:  0,24%

18 months: 0.10%

NEW THIS WEEK at 20 months: 0.06%

Fortunately things keep on going down, so we are happy with the result. MMR seems to be solid with 400 mg. Gleevec working well and minor side effects (fatigue mainly).

I wanted to share with you the good news, you have always assisted/supported us when we have needed during this journey. Thanks for being there.

Finally: I would like to send you All our Best Wishes for the Christmas Season and the New Year to come. Wishing 2014 is a year in what we all find what we want and our fight goes in the right direction and with good results.

Merry Christmas !!!!

Best regards from across the Ocean.

M

[Trey]

Outstanding.

[Marathon]

Hello to Everybody

As I have been doing for the past months, I share with you my wife's last results (with her consent !!!!). We are a real team in this race and we do this together as well.

We are usual readers of the posts but we do not write that often

BCR/ABL Results-Evolution

At DX (Apr 2012): 46%

3 months: 6.3%

6 months: 0.66%

9 months: 0.53%

12 months: 0.49%

15 months:  0,24%

18 months: 0.10%

20 months: 0.06%

NEW RESULTS at 22 months: 0,0073%

She has been on Gleevec 400Mg since dx in late Apr 2012. Minor side effects.

We are happy again that the downward trend seems to be good and consolidated. Looking forward to seeing some more "zeros" at 24 months !!!!

We send you all best regards from the Old Continent.

Wishing you well.

M

[thomaskk]

Congratulations . Party time !!

Thomas

[Marathon]

All

We come here for advice whenever we have had a problem or some questions. We also like to share with you all the results:

BCR/ABL Results-Evolution

At DX (Apr 2012): 46%

3 months: 6.3%

6 months: 0.66%

9 months: 0.53%

12 months: 0.49%

15 months:  0,24%

18 months: 0.10%

20 months: 0.06%

22 months: 0,0073%

NEW RESULTS at 26 months: 0,003%

My wife stays on 400 mg. Gleevec since DX and the drug is doing the job. Minor side effects.

We are happy to see that things follow the right trend and that life is as normal as it can be.

Best regards to all and best of lucks !!!!

M