6 replies to this topic

[Sneezy12]

http://bloodjournal....462291.abstract  Frank

[CallMeLucky]

That's not very good for most of us.  If I read it correctly it basically says you need to be a female who achieved MMR within 3 months to be a good candidate for cessation.

Looks like I'm 0/2!

[Trey]

The article only makes conclusions about what population might be eligible for TKI drug discontinuation, not anything about success during drug discontinuation itself.  It is mildly interesting to note that they say women reached PCRU twice as often as men while taking Gleevec for at least 8 years, so are suitable candidates for drug discontinuation twice as often.  The data does not look at 2nd Gen drugs, or shorter timeframes.  Again, mildly interesting, so I could say it is nothing to sneeze at. 

[GerryL]

In a couple of the other articles the reason why they talk about females being able to achieve it, is because they believe we are better at taking our TKI more regularly than men. So in reality if you're great at taking your TKI and achieve an early MMR, then it shouldn't matter what gender you are.

I'd like to know how many of our CML population achieved MMR in three months, you'd either have to have a low level of CML to start with or take 600/800mg Gleevec from the get go.

I'm still going to stop taking my TKI in October, even though I failed the three month MMR.

[Susan61]

Hi Gerry:  There is probably a lot of truth to what you just said.  I have been on Gleevec since 2000, and if I missed 3 doses since then would be a lot.  I never miss a dose.  I wish you well on stopping your TKI.  I do not want to stop mine, just trying to get my doctor to let me cut back on my dose.

     I cannot find my old records, but I started Gleevec in 2000, and could only find my records regarding my PCR status from 2002 to present.  I might have been PCRU in 2001, but I always say 2002.  That would make me PCRU as of this July for 11 years.  I know I did not do it in 3 months.  I know I got to Ccyr quick.  I also remember that my WBC was only 18 when diagnosed, and 10 is normal.

    Sounds like your doing very well.  Keep It Up

[GerryL]

Hi Susan,

I start to wonder is your doc doing some sort of long term usage of Gleevec 400mg study, with you as one of her main test cases.

My doc let me drop to 300mg after a year of PCRU and he doesn't look to do anything outside of the guidelines. Though I still get some side effects cycling through, I have found I have a lot more energy and also regained strength in my muscles which has allowed me to return to an exercise program with light weights. I recently had pain in my hands but that has cycled through. Fluid retention still hangs around to a lesser degree.

After 11 years of PCRU you should be able to drop to 300mg safely and that should hopefully help you feel a bit better health wise. If you doc is still against it, I would ask her for a referral to someone else, be interesting to see how she reacts when she realises you are serious about dropping dosage.

[Susan61]

Hi Gerry:  You could be very right about using me as a test case.  She was not my original Oncologist.  I went to her 2 years ago after my doctor retired,and his replacement was a total idiot.  She has told me that I am her longest patient who has survived CML etc.  I see her in July, and I might push the issue.  I guess because I tolerate the side effects I just keep doing what I am told.  I have spoken to people who have said she is great in the treatment of many cancers.

I get the orbital edema, and it never goes away, along with some other side effects that have gotten better but still there.  I will keep everyone updated as I go along.

Take Care