11 replies to this topic

[scuba]

http://www.marketwat...ents-2012-03-29

[CallMeLucky]

I was a little put off by this study.  I would like to know more about who did it and if there are any underlying motivators for it.  They claim a couple of disturbing things.

"The study finds that over one-fifth of treated patients are in the accelerated or blast stage of the condition"

More than 20% of people living with CML today are in Accelerated or Blast Crisis?  That would suggest TKI's don't work as good as we have been told.

"CML patients often exhaust TKI therapies, so new therapies are desired to treat these patients."

This is basically saying that TKI failure is a given at some point

"As CML patients are treated with TKIs they develop mutations which may limit the efficacy of these therapies. Hematologist-oncologists report that the majority of CML patients tested for BCR-ABL mutation status have a mutation, with the most common being T315I."

Again this is basically saying that all CML patients will develop mutations and most of the time it will be T315i.  I thought that was the rarest mutation - I also did not think all patients will eventually develop mutations.

"Hematologist-oncologists report that none of the TKI brands have a good perception in terms of being effective for treating common mutations which limits their treatment options,"

This just seems wrong, with the exception of T315i I thought most mutations did respond to at least one of the three approved TKI drugs.

The gist of this report is that TKI's only work for a period of time, eventually we will all develop mutations and there are no TKI's to deal with them and I guess that is supposed to explain why over 20% of people with CML have progressed.  This seems to contradict a lot of the information we have today.  I find this very suspect.

[JMGrad]

*Phew*!!  Thank you Lucky!! As a newbie to CML I read this article and had actually started scouring the site for information on muations when I came across your response. Ok. Now Im not so scared. Well... not as bad as I was when I first read it.

   Jean

[PhilB]

The study may have some value.  What we have here though is a precis of the study written by a junior financial PR who didn't actually know anything about medicine or understand the paper they were summarising.  You can have fun trying to work out what someof the things in the study probably actually said before this person picked phrases from it more or less at random, but otherwise it's worthless.  I wouldn't trust  a trainee nurse to do my income tax any more than I'd look for medical information in the financial press.  Chill guys.

[LivingWellWithCML]

It's just wrong -- I've learned enough over the past year to know that.  Michael, I'm having a good glass of wine this evening and a chuckle with the family over this one (as I'm sure you are too!).

[Dina36]

This is scary

[ChrisC]

Phrasing is everything:

"...Hematologist-oncologists report that the majority of CML patients tested for BCR-ABL mutation status have a mutation, with the most common being T315I...."

Well, yes, though most CML patients never need to be tested for BCR-ABL mutations. Those few patients who aren't responding well to their TKI(s) end up getting the mutation test and yes, the most common mutation found is T315i  and that's a good thing: now there is ponatinib, on which many then do well.

Right?

[Trey]

Fresh material for my compendium of "The Dumbest Things I Ever Heard An Onc Say"*, which is now quite long.  It makes you wonder how any of us ever get good treatment.  Thank goodness the TKI drugs do the real job, and the Onc is usually just along for the ride.

By the way, as Chris mentioned, the reason that many people who have a kinase mutation test done test positive for a mutation is that no one is tested for a mutation unless it is believed they actually have one.  So that is a wee bit of a self-licking ice cream cone.

*TDTIEHAOS

[scuba]

Hey ... no need to be sorry. I just posted what I found for edification reasons. I happen to believe it is a PR firm pushing a point of view by cherry picking the data. We do not get to see the data, only the summary.

The real point is no one knows or can claim they have "truth" in all of this. As Trey pointed out in another thread some weeks back - go to a stem cell transplant expert and for some reason you need a stem cell transplant to deal with CML.

The only truth I know is that if they (they being they) find a cure for CML, what happens to the BILLIONs made selling forever TKI drugs. The incentive not to cure us is fairly high, but I'm being cynical.

Nevertheless, I thought there would be a response to this Press Release dated only a few days on the latest in CML.

Dan: No wine for me. My wife and I gave up all wine (and alcohol) for Lent. It comes to an end, Sundown, a week from today. I'm cranky so no one bother me.

[Happycat]

No surprises here. This is from a marketing research group, not a scientific study. They look at it from a marketing angle, and as Michael said, push a certain point of view.

Read this in the light of Dilbert comics, when Dilbert has to interact with marketers.   Marketers have their own brand of logic, data be damned.

Traci