27 replies to this topic

[SandyG353]

Thanks Gerry for your input.  What strikes me as odd is that my daughter's oncologist  said that he will monthly monitor her blood after she stops Gleevec, (providing the next blood test still shows total molecular remission).  However., if the numbers start going up he will double her doseage of Gleevec. That does't sound right to me.  From what I have read, those that were in the trials whose numbers came back were put back on the same doseage of Gleevec.

Any thoughts?

Sandi

[gerry]

From what I'm aware of, everyone that has had the CML return have returned to the same dosage. Perhaps he is super keen to get your daughter back to negative, but he's not the one experiencing side effects. I think one or two of our FB members have taken the opportunity to switch TKIs at this point, but that is more about side effects and trying a different strategy.

 

There was no suggestion from my doc about doubling the dose if my CML returned and my doc is conservative, hence why I am still doing two monthly blood tests at 3 years. My doc refers to the Australian Stop trials. I would push back if my doc tried to double the return dose. I am also aware of someone that was on 600mg Gleevec trial for stopping and his CML returned in around 3 months. More dosage isn't necessarily better for somethings.

 

Also be aware there are blips for some people stopping, so keep an eye on test results, loss of MMR is the return point, not a blip. Monthly monitoring is good for the first six months, oddly my doc decided two monthly from the start, go figure. 

[Trey]

We should remember that patients in these cessation studies lose response all along the way, most in the first 6 months, but a significant number (roughly another 10%) after that for over 2 years. 

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Edited by Trey, 30 October 2016 - 09:23 AM.

[SandyG353]

Trey, do you think that my daughter should take the 50/50 chance of going off Gleevec or push to lower the doseage to 200mg like you take.

[gerry]

I figure I know what Trey will say. :-)

[SUE]

Somebody told me that Dr. Druker has stated that anything below 40 mg of Sprycel could not be considered a safe level.  That doesn't sound right to me.  Has anyone else heard that he made that statement, or that any other medical professional believes that to be the case?

 

Thanks very much.

 

Sue

[Trey]

Trey, do you think that my daughter should take the 50/50 chance of going off Gleevec or push to lower the doseage to 200mg like you take.

 

She can keep all options open if she initially lowers dosage to 200mg then after a time reassess to stop altogether if she does not get enough relief from the side effects at 200mg.

[Trey]

Somebody told me that Dr. Druker has stated that anything below 40 mg of Sprycel could not be considered a safe level.......

From what has been reported by his patients on here, Dr Druker is said to believe in taking lower dosage of TKIs over the longer term if that suits the patient's needs.