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Stats on CML & T315i, Trey? Anyone?


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#1 bsbk13

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Posted 19 April 2011 - 05:35 PM

My other half, Bill, has CML and after about 15 months on Gleevec (9 mo), Sprycel (3 mo), and Tasigna (<3mo), it was discovered that he has the T315i mutation.  He is currently in the Ariad/ponatinib drug trial and seems to be responding.  He's just over 1 month in.

It seems to me that I read once that about 40,000 new CML cases are diagnosed per year.  I may have dreamed that number.  But if anyone can tell me the approximate # AND if there's a stat for how many of them have the T315i mutation, I'd like to know.    Our hematologist/oncologist has about 40 CML patients, but only 1 that's been dx'd with T315i.   I don't think that's enough of a study group to determine that 1 in 40 CML patients has it. :-)

Would be interested in talking to others who have this mutation as well....please respond here if you want to talk, even if you don't know the answer to the question.

Thank you!

BethS



#2 Trey

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Posted 19 April 2011 - 08:49 PM

The number of newly diagnosed CML patients each year is actually 4500, not 45,000.  Less than 5% have or develop the T315i.  In our group here there are several hundred participants, and I only know of fewer than 10 with T315i (including Bill).

See previous discussions:

http://community.lls...tart=0&tstart=0

http://community.lls.org/message/81746



#3 bsbk13

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Posted 20 April 2011 - 05:36 AM

Wow.  I knew it was a low number (even 40,000 would be a low #, but 4,000.....).

I suspect that there are going to be many more cases uncovered over time, just like Bill's.  He obviously had only a small sub-set of cells initially that were carrying the T315i sub-mutation, because he responded very well initially to Gleevec.  But presumably once those straightforward Ph+ cells were depleted, the only cancer cells left were those few with the T315i.  As they divided, the population became primarily, maybe even exclusively, T315i cells.

Makes you thankful once again that someone somewhere would be discovering a way to deal with such a rare occurrence.......for something like 200 patients a year?

Thanks for the info, Trey, I knew you'd be the person to ask.

Off to read the links attached.

BethS



#4 MACELPatient

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Posted 20 April 2011 - 02:18 PM

Trey, good to know some of the stats for CML.

I've been told and from what I hve been able to find, that there are approx. 250 cases of my disease CEL a year.  Amazing that a drug like Gleevec can be found to work and be approved for something like that.



#5 Trey

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Posted 20 April 2011 - 08:53 PM

ET-MA,

For the benefit of the folks here with CML, your Chronic Eosinophilic Leukemia responds to Gleevec because CEL is characterized by excessive PDGFR, which Gleevec inhibits as an "off-target" kinase inhibition.  For the rest of us it causes side effects, for you it is your therapy.  The same is true for c-Kit and GIST tumors.  Our PITA is another person's therapy.  Glad you are doing well.  I know you end up talking to yourself over on the "Rare Leukemias" site.  Sort of like our Tedsey who talks to herself in graphic terms about body part details, and we all watch in amused befuddlement.  At least Lucky has kept you company on occasion over on the "Rare" site.

If anyone wants to read about ET-MA's story:

http://community.lls.org/thread/6260

Make sure you ask if you need some help.



#6 MACELPatient

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Posted 21 April 2011 - 11:36 AM

Thanks for the kind words.  It's appears as though there are mnay inhibitors already on the market that may inhibit PDGFR but are not yet approved.  I am waitinf patiently here for my 1 year biopsy results which should be coming any day now.  I'll post my blood results over the past year so people can get an idea of what I am going through.  I definitely don't feel like a leukemia patient except for the GI issues.  I have zero anemia and minimal edema.



#7 Happycat

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Posted 23 April 2011 - 11:02 AM

Beth,

There's another drug in development called DCC-2036.  Recent papers in Cancer Cell show it has good activity against the T315I mutation.  Tufts Medical Center Oncology Research Institute is on one of the paper, so I have to assume they are testing the drug.  Deciphera Pharmaceuticals is the drug company developing it (hence the DCC name).  They are in Lawrence, KS.  Based on the results, it has been advanced to Phase I trials.

My best wishes to your husband for a good response to the ponatinib!

Traci



#8 bsbk13

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Posted 23 April 2011 - 12:12 PM

Thanks, Traci!  It's just great to have other options coming along!

Bill's gained 9 lbs back of the 33 he's lost since January.  He'll have been on ponatinib 6 weeks on Monday and his numbers are looking pretty good!

For the first time since November, his hemoglobin actually went up on its own without a transfusion, WBC count is hovering around 11,000.  Platelets are a bit low and he may need some of those next week, but pretty good, considering.

He's having a side effect where the muscles down the backs (not the fronts) of his legs are super-achey.  Percocet helps it a lot.  I'm trying to get him to get a bit of exercise---even if he could start with 5 mins a day on the reclining exercise bike where he's not weight bearing....so that he gets some strength back.  I think having more muscle tissue in his legs will make all of his muscles less strained.

Thanks for the kind words, those are always appreciated.  Hope everything goes well for you too......and pets to Happycat.

Beth






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