8 replies to this topic

[LivingWellWithCML]

Hi everyone,

I am approaching my 6-week follow-up with Dr. H. Khoury at Emory Winship in Atlanta - I will have been on Gleevec 400mg for that entire period.  The weekly CBCs so far have been encouraging, but I'm wondering if it's appropriate to look at FISH & PCR testing at the 6 week point, or is that considered too early to see any measurable response at that level?

Just curious what others' experiences have been...

Thanks in advance -

Dan

[Trey]

If your health care plan allows the testing, it is reasonable to have at least a FISH done at 6 weeks.  But three months is more standard timing.

[LivingWellWithCML]

Good point on the insurance coverage - I will check.  Regardless, I imagine that FISH would show a decline at 6 weeks if the Gleevec's doing the trick, so I asked my onc and she said that she'd run FISH if Emory doesn't.

I'm just not a very patient person...

[LivingWellWithCML]

Trey (and all),

I did receive a 6-week PB FISH test on Gleevec 400mg and the result was 41.5%.  Marrow FISH was 98% at dx.  I guess that's comparing apples to oranges, eh?

Three months is definitely the standard for PB FISH/PCR baseline, but I do wonder if this is any indicator of the speed of Gleevec response for my case and it's good, bad, or expected.  I'm real big on pushing "personalized" treatment, so this is my way of doing it, because I continue to wonder if Tasigna first-line is/was the right way to go and if "speed of response" is a critical measure or not.  Can any conclusions be drawn this early?

Obviously these are questions for the CML specialist, but I'm always interested in folks' thoughts on this board...

Dan

[Trey]

The response is probably about average.  If you want better than average, you could ask your Onc about switching drugs or taking more Gleevec (probably 600mg).  Faster can sometimes be better, but there are always quality of life issues that can come into play.  If Gleevec is very kind to you, then more Gleevec might be a good route.  You could also just see what happens in 3 months.  All would seem to be acceptable options.

[LivingWellWithCML]

Thanks - not sure if "average" is really good enough, but every person is different I suppose.

I'm still looking at the 'lecture' notes from my first visit with Dr. Khoury @ Emory and comparing to the NCCN guideliness - looks to me like he's not expecting 0% FISH until the 6 month point, which appears to be consistent with guidelines.  I've had two visits thus far and he's very 'big picture', but I'm always in the details.  Seems to me that one should achieve 0% FISH much sooner than 6 months in order to be considered responsive enough to continue on the TKI of choice, but that's inconsistent with the guidelines.  I achieved a decent CHR within the first week of treatment, but guidelines look for CHR at 3 months ... man, what gives here?

The other thing that seems to bug me about NCCN protocol is waiting until a cytogenetic relapse before even -considering- mutational analysis.  Given some of the rare cases we witness through this board, I don't understand why they wouldn't run a mutational analysis as standard protocol for everyone at ... say ... 9 months just to see if there might be something lurking, so that a TKI switch can be implemented before being surprised by disease progression.  Especially since the majority of mutations present themselves within the first 12 months.

Just venting about how this could be monitored even more closely .......

Dan

[Trey]

Actually the NCCN Guidelines want CCyR before 12 months (not 6 months).  The CHR at 3 months is the max timeline before "failure", but most will achieve it on average before 6 weeks.

With regard to a mutation analysis, most TKI resistance is not due to a kinase mutation.  Although a mutation analysis is useful after TKI failure, it is not very useful in most other cases.  A mutation must be of sufficient quantity before it will show up on a mutation test.

[CallMeLucky]

I understand your anxiousness, but you are doing very well.  PB and BM FISH are not really Apples and Oranges, they are pretty comparable.  Essentially you went from 100% of your cells being positive for Philadelphia Chromosome to about 40% positive for PH+ in 6 weeks.  That sounds pretty good to me.

[LivingWellWithCML]

Thanks guys - great feedback as always...

Dan