Dr. Jorge Cortes Discusses the Ponatinib Ph+All and CML Evaluation (PACE) Trial
Posted 29 June 2012 - 06:45 PM
And more from Dr. Cortes on PatientPower. Continued good news on 2nd gen TKIs, as well as his recommendation for folks who are on Imatinib and doing well (short story = stay on what's working and no need to switch):
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Posted 02 July 2012 - 04:13 AM
Yeah, i saw that earlier as well, very interesting. Lets try not to miss any doses ok?
No wonder the guy Dan met on that CML meeting in Atlanta lost his response to imatinib, if he kept missing doses. Maybe he wasnt even resistant, just a bit sloppy. (Purely speculation of course )
I wonder if there are any studies on this subject, as it would be interesting to read how many doses pr year/month the average CML`r misses. (Already answered in the edit)
I actually remember asking my onc about what if i got the stomach flu, and was vomiting for a few days straight and couldnt get my meds down. He thought about it for about 10 seconds, then said it should be okay if it wasnt more than 2-3 days.
Another video on the adherence subject: http://www.patientpo...-the-right-dose
So basically from the numbers combined in these two videos, you can put together this vague statement:
"Miss less than 20% of your doses if you want to keep the CML at bay, and miss less than 10% of your doses if you want a deep molecular response"
Nevertheless, i am not taking any chances, my goal is 0% missed doses, so far so good. (Knock on wood)
Being realistic, im sure, that over time, missing one or two doses will likely happen, that day will be a day of big personal defeat for me.
Some Adherence studies: http://www.cmlallian...s-adherence.jsp
Just check out that first image, that will give you a good enough reason to take your pill each day
Im guessing a lot of the adherence issues must be side effect related, i wish people would come to this forum to get help, or seek more help from their doctors on how to manage side effects better.
Also, in the drug studies that are taking place, is adherence a factor taken into consideration when reviewing how successful a drug has been?
Anyway, back on topic, im glad Ponatinib is showing such good numbers, especially for those with the T315i
PS: Dan, great video of you on the PP site, you have a great family, i hope you can get your operation soon so you can continue your running as it seems to be a big part of your life
Posted 02 July 2012 - 05:03 AM
The only time I've missed tablets is when I've vomitted after taking them. That's been 4 over 2 years. I'm starting to doubt that it is the amount of food I've eaten, more likely to be that I've taken something with the Gleevec - either Imodium or something for the pain.
Posted 02 July 2012 - 04:37 PM
Dr. Cortes is awesome and I love that in the video he is still rocking an 80's boom box on desk, complete with cassette player and dial tuner, LOL
My favorite part is the end of the video where he says we are getting to the point where CML patients can expect to live a normal life span and not die from CML.................
Posted 02 July 2012 - 05:02 PM
My Onc has a patient, a young, uninsured girl, who receives Gleevec through a charity. At one point she was having trouble getting the contributions secured consistently, and was only taking a 400mg dose every third or fourth day after reaching CCyR. Her FISH went from 0% to 1-3% and stayed in that range until she got enough meds to begin taking them every day again. This went on for at least a few months. I forgot how long exactly.
Posted 02 July 2012 - 05:50 PM
Uggggh! That was tough to hear. I have never missed a dose in 2.8 years since dx! But good to know I should keep staying vigilant (you see, I want to live). Well, don't want to lose CCyR if that is the best I can ever get.
All the best.
Posted 02 July 2012 - 09:50 PM
Thanks Teddy! Surgery is at the end of the month...should be back to good running form by fall.
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Posted 02 July 2012 - 11:36 PM
How was your trip to Japan? Did you little ones travel okay?
Posted 03 July 2012 - 04:14 AM
I think i stared more on the cassette player than on Dr Cortes actualy
Posted 03 July 2012 - 04:15 AM
Good to hear Dan
Overcast: That is such sad reading, i hope all is well with the young girl.
Posted 03 July 2012 - 04:16 AM
GerryL: 1 or 2 doses pr year must be within the margin of error
Posted 03 July 2012 - 05:34 AM
I think you're right (I did get to PCRU) - let's see how your numbers are in two years
Posted 03 July 2012 - 05:44 AM
Well ill settle for a good cytogenic response at my next checkup
Posted 03 July 2012 - 08:15 PM
Just to give everyone hope ... I was dx in 11/10. I was off my Gleevec for 8 consecutive days following surgery and complications in 1/12. Achieved PCRU in 3/12 (after mentally preparing myself for the worst). Stay hopeful!
Posted 03 July 2012 - 08:37 PM
I think they are meaning someone who misses at least three doses a month every month for the first two years, they may not achieve an MMR. Though that doesn't help people like Tedsey who take all their medication and still have an issue of achieving MMR.
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