6 replies to this topic

[carrie]

I have been on Gleevec for four years.  Started on 400 and eventually went to 600.  I am not getting to 0 so I guess one could say

I am not responding to Gleevec.  My onc is ordering bloodwork called ABL Kinase Mutation test.  He said this will tell him if I am

able to take a different drug.

Anyone have knowledge about that?

He said that I could go up to 800 gleevec or try another drug.....the thing that scares me is that I teach school and I would

hope that another drug would enable me to continue working as I need the insurance....plus I do love teaching.

Now I am wondering about all those different side-effects. With Gleevec I have fatigue, diarrhea, brain fog, chills often, and slight nausea when I first take it.

If I have to switch I hope I have less problems.  Change is difficult for me.

Carrie

[Trey]

When you say you are not getting to zero, there are two definitions of zero.  The first zero is Complete Cytogenetic Response (CCyR) where the BMB and/or FISH is zero.  Then there is a much lower zero called Complete Molecular Response (CMR) where you are zero by PCR.  If you have never reached CCyR in four years, that is a problem.  If you have not reached CMR, that is not a problem, just something that most people do not reach since it is a very difficult goal to achieve. 

If you have not reached CCyR, then a kinase mutation test may be useful.  If you are talking about not reaching CMR, then a kinase mutation test will not work since it is only sensitive enough to work at approximate levels higher than CCyR.

So some clarification is required before answering further.

[carrie]

Trey, I believe that the doctor told me that I reached a CCYR.  On my PCR bloodwork I have never reached a 0.000 and I seem to fluctuate

even though it does seem like I am always very close to 0.000....I don't know.  I get so confused.

I don't understand all of this very well but my BCR-ABL t (9;22)fusion tests were:

7/20/07     0.144

9/14/07     0.144

12/27/07   0.098

3/28/08     0.028

5/28/08     0.018

10/23/08   0.015

1/07/09     0.041

2/23/09     0.035

3/20/09     0.014

4/23/09     0.014

7/27/09     0.027

11/4/09     0.009

2/5/10       0.011

5/3/10       0.004

11/17/11    0.007

2/7/11       0.011

So  he told me today that my numbers are going up and that because I have never gotten to 0 which I am assuming means 0.000 (CMR)

that he thinks I am resistant to the Gleevec and that I need to have a blood test ABL Kinase Mutation to see if I would tolerate the other

medicines. I hope this information might help you.

Carrie

[PhilB]

Hi Carrie,

Unfortunately there is still some variation in how people's PCR numbers get reported, with not everyone being on the International Scale (IS) yet and some labs even reprting numbers as a raw ratio rather than a percentage.  We can't say for certain, but on the (most likely) assumption that those PCR numbers are IS percentages, I believe most people would conclude that the only change that you need is a change of oncologist.

The PCR is nor an exact test and is subject to quite a lot of variation, even on different tests of the same sample.  Your last three tests are definitely NOT sufficient to conclude that you have any kind of a rising trend and are well within the limits of expected variation.  What your numbers appear to show is someone who has been stable for years at a very low level of disease - pretty much exactly where you would want to be..

You need to make sure that those numbers are indeed IS percentages (ask your onc what level the lab considers a Major Molecular Response - for IS it would be 0.1).  If they are then ask your onc why on earth he is considering increasing your dosage and why he has ordered a test that is highly unlikely to work with someone whose level of response is as great as yours.  The only reason to think about changing drugs at that level of response would be to reduce side effects, not to go in pursuit of CMR.

Phil

[Trey]

Your Onc is worrying you needlessly.  You are doing great.  PCRs will vary due to inherent inaccuracies from one test to the next by the amount yours have varied, which is why it is more important to watch overall trend lines.  Keep doing what you are doing, unless you want to change drugs to get a power-boost to get to zero, or to change the side effects profile.

[Tedsey]

Dear Carrie,

I had a similar experince with my first onc.  At 3 months she was very disappointed I was not at 0.  She also told me that I was not doing well and was headed toward a SCT (BTW, she was a transplant doctor).  I always left the cancer center thinking I was doomed.  After joining this discussion group, I learned fairly quickly that she had very little knowledge or expertise in CML.  Your situation reminds me of this.  Perhaps a second opinion or new onc is in order like Phil said.

As I was getting little response on Gleevec after 9 months, I switched to Sprycel.  The drug has been kind to me and often I feel very normal.  I cannot tell what side effects I have yet.  So, no worries if you ever change drugs.  I feel it is always worth a shot at less side-effects.  And since you are doing so well on Gleevec, if you ever change, you could always go back.

Wishing you all the best,

Tedsey    

[gianfranko]

Carrie,

Me and my girlfriend are in the middle of an analagous situation her log reduct went from 2.7 (at 5 months treatment) to 2.5 (at 8 months treatment) and the doctor was already talking of increasing the dosage of gleevec (currently 400mg).  I describbed the situation on this post: http://community.lls.org/message/82828

Anyways, he is waiting for the next PCR (so and so are we; its due next month) before he increases my gf's dose to 600 - 800mg.  What I did was, I emailed Dr. Cortes at MDA and asked if he could recommend a CML specialist close to me.  He wrote back to me with a nice response and recommended a doctor in Tampa, FL.  So after next PCR result I will have my gf see this doctor before increasing the dose of medication.  So best is to try to find a CML specialist in your area.  Regular oncologists seem to quick to paint a grim picture of the circumstances: In our case we went from "you are doing great" (at 5 months) to "treatment is failing we may need to increase dosage or switch meds" (at 8 months).

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