13 replies to this topic

[survenant]

See

A Lower dosage of imatinib is sufficient to maintain undetectable disease in patients with chronic myeloid leukemia with long-term LOW-grade toxicity of the treatment.

 

See also Gleevec - Imatinib


 

[Trey]

Long term low TKI dosage "maintenance" therapy (after a couple years PCRU) will work for most CML patients and reduces side effects significantly. 

[TeddyB]

Always good to read about this. Hope i get to MR 4.5 some day.

[elvis]

I have never been PCRU for the last 6 years since diagnosed.  Only hovering around MMR with response plateauing. My doc switched me from Tasigna to Sprycel 100mg saying Tasigna long term usage has some cardio concerns but it did not change the response much, but it did help some side effects at least for now. Not sure what the long term effects of Sprycel are PE etc .etc.

 

This plateauing of response concerns me. My doctor thinks all of us do not absorb the drug the same way, hence individual metabolism of drugs have high variability there by varying the response.

 

The other explanation was there could other sub-types/clones of CML that are not that responsive that often keeps coming up.

 

Anyone knows the effect of longer plateauing?  Is it important to go into CMR in terms of favorable prognosis?

 

Little concerned about prolonged constant PCR numbers.

 

Regards

elvis

[Gail's]

I was on a fairly high dose of simvistatin when I started gleevec. I'm not sure if the awful side effects I experienced were normal or worse because of it. The dizziness was awful and did resolve within several days when I stopped simvistatin. I have since restarted simvistatin at a quarter of the dose I was on before. I find the nausea and diarrhea have continued as well as onset of muscle aches now. I wonder if the combo of the two is what's making my adjustment seem prolonged. I've been on gleevec since end of February 2015 and stopped simvistatin about a month later. Reintroduced simvistatin a month ago and seems like that's when muscle aches started.

[chriskuo]

Gail,

Is your doctor considering trying a different statin? The interaction between statins and TKIs can vary by individual.

[Dom]

Gail, statins are like poison to me. I really don't care what the benefits are. They make me feel like 105-year-old man.

I tried everyone, and they all have the same effect.

Ask your doctor about zetia. It's absorbed elsewhere and it doesn't have the effect that statins have.

[gerry]

A friend's wife has finally found a statin she can take. She has had a number of side effects from a couple of them.

[gerry]

A friend of mine is on 200mg Gleevec, she has been PCRU for at least 5 years. She did try stopping and the CML returned before she got to the six month mark. She is back on 200mg and has returned to PCRU.

[Dom]

Gerry, I guess it depends on what is meant by low dosage, but to me, gleevec 200 is already low dosage. I would love to cut my dosage by half.

[gerry]

I went down to 300mg Gleevec after a year of PCRU, for me side effects seemed to build over time rather than reduce. There was a noticable difference in regard to muscle and joint issues. I felt I could stretch without worring about hurting something.

 

Mind you I got a cramp in my calf muscle the other night, bought back the bad old days of Gleevec to me. Can only put it down to maybe being dehydrated.

[MACELPatient]

Just posted in my private "Rare Leukemias" section of LLS but I am starting a reduced dosage of Gleevec ctoday if my meds come in the mail.  Dropping to 300mg from 400mg as a start and if all goes well, another drop down to 200mg.

[Trey]

With your CEL leukemia, is FIP1L1-PDGFRa FISH the test which would show up a loss of response at lower dosage Gleevec?  Or would a rise in EOS levels be the first indicator? 

[MACELPatient]

With your CEL leukemia, is FIP1L1-PDGFRa FISH the test which would show up a loss of response at lower dosage Gleevec?  Or would a rise in EOS levels be the first indicator? 

 

It would probably be the FISH test since that specifically looks for the fusion gene.  My EoS levels fluctuate throughout the year,  They run from as high as 11% to down around 4% which they just came in at.  They run highest during Winter.  Speaking of my FISH test, I should hear from the Dr in a few days on the results.  They have to send it out to get done at an outside Lab.