4 replies to this topic

[Widgeonus]

Doc said my PCR is stable around .2 after 1 year. Is it normal to increase dosage to 600mg, and is this a bad sign of things to come

[Trey]

It is neither normal nor abnormal, nor a bad sign -- nor a sign at all for that matter.  I cannot predict "things to come".  Things come.  Things go. 

 

You have done very well.  Docs always want better.  Increasing dosage can speed up response, or it can slow it down by causing side effects which require drug breaks.  Some small children do fine on 600 or 800mg Gleevec, but 600mg kicked my a$$.  It's just one of those "things".

 

You could try it or not.  No right or wrong answer.  But I cannot promise a lack of "things to come".  Things do what they want to do and they come and go without asking for permission. 

[Widgeonus]

Wow Trey. Geez. You could have just said that "I had to take 600mg of Gleevec at one point and I'm still doing fine". I have no idea what to expect from this disease. I don't know what to look out for. I don't know what a good response is and what is poor. No one can predict the future but stories of similar experiences can sometimes be reassuring.

[Antilogical]

My doctor and I recently discussed returning to the full dose of Gleevec, now that my knee surgeries are over (I hope).  He said that he participates in group meetings with other docs that treat CML, and - while the treatment goal for many years has been PCR-U - they have found that a stable response is fine, too.  For instance, a patient at PCR-U will not necessarily live any longer than someone who is stable at 0.02.  That is where the balancing act comes in - weighing significant side effects at the full or greater dose against fewer issues but stable on the lower dose. Just food for thought....

[Pin]

It sounds to me like your doctor just wants to get a better response by increasing your dosage to see if it makes a difference and bumps you down just a bit more. If you are stable at that level, things are unlikely to get worse if you continue on 400mg. But your doctor is probably trying to see if you can get an better response by increasing.

 

I think Trey is saying that different dosages affect people in different ways, lots of people can tolerate 600mg of Gleevec, some people have even been on 800mg for years and are doing fine, we all respond in different ways - it just depends if you can tolerate it or not.

 

I don't think there is harm in trying it and seeing how you go - if you can't tolerate it, or you get any increase in side effects, you can always go back to 400mg as you are doing ok currently (with response, and side effects I assume). There have been lots of trials that have examined higher dosages, generally I think the increase in side effects (and people having to come off the medication) cancels out any benefit that higher dosage offers en masse. However, if you can tolerate it individually, it may get you down a bit further.

 

Tolerating the uncertainty of this disease is the hardest thing