8 replies to this topic

[BigAl]

Hi All,

I was dxd in 2004 and was gien a 400mg dose of imatinib that i didnt respond too. Dr increase to 800g and 3 months later i was in CMR prc- ever since then that almost 7 years, My dr wants now to reduce my dose.

2 concerns

- i am a tall big man and think needed the extra dose of gleevec to work

- worried of mutation and resistance of the drug.... i am thankfully managing will now... if it aint broken why fix it

any advise is much appreciated

best

[Taylor]

Congrats on holding PCRU for so long!  I hope I can do the same.

How are your side effects with 800mg?

[Trey]

The dosage reduction seems to be reasonable.  You do not need as much drug after killing off most of the leukemic cells as you needed when you were first diagnosed.

The mutation issue is not a concern for you at this point.  Here is a discussion about dosage reduction and the mutation issue:

http://community.lls...e/112202#112202

[BigAl]

Thanks Taylor, I am grateful and thankful for what imatinib has managed to achieve for me....

side effects include puffy eyes, paleness, chronic tendonitis in random joints, brain fog and IBS

overall things are fine... and wouldnt want to risk this blessing but worry about the heavy dose in the long run

best of luck to you

[BigAl]

Thanks Trey for your very informative post and link....

I have been reading from different posts and it makes sense to reduce to at least 600mg for a year!

i am excited and anxious about these new revelations of reduction and even tapering of imatinib...

[jjg]

Hi BigAl,

About your first concern about bigger people needing higher doses. In me size and gleevec concentration did not correlate as expected - I'm small, at least in terms of weight and expected therefore that my plasma concentration levels would be relatively high... but they were low. My onc said that concentration levels also depend on how your liver metabolizes the drug, not just weight. Have you had your concentration levels tested lately? As per the discussion Trey referred to it seems that knowing your concentration with 800mg would be a good guide to keep your lower dose plasma concentration above 500ng/ml.

Good luck with all this, I hope that you can see an improvement in side effects and keep PCRU.

[BigAl]

Thanks jjg... and no i have never taken the gleevec level concentration... whats the name of the test!

best

[jjg]

BigAl, I'm pretty sure that the test is just that a gleevec concentration level test, it is a trough level test normally done at 24 hours ie. just before you take your tablet. If you are dose splitting I don't know how they work it. There was a discussion about it here:

http://community.lls...age/63545#63545

I figure it is not a common test because it had to be sent to a different lab in another state. They told me it was probably not covered by our government medicare (Australian) and would cost me around $60. That was 5 months ago and we got the results but no bill :-)

Concentration levels do correlate with response to treatment i.e. on average higher concentration = higher response but there is certainly some variability as in the discussion I linked to and I'm certainly not average in this regard either.

http://bloodjournal....09/8/3496.short

http://bloodjournal....110/5/1699.full

I think that the best data is in how you respond but that the concentration adds useful insight. In your case you haven't had any data on changes in response for 7 years and hopefully you will not be getting any more data, ever!

[BigAl]

Thank again jjg trying to find a lab for the concentration test