6 replies to this topic

[mlk210]

Since December I've been on two drug breaks for plural effusions caused by Sprycel. One was for three weeks around the holiday which was fantastic because I had unlimited energy to get everything done. 

 

The next one was for four weeks after trying to reduce the dose to 70mg. During my first break, my pcr remained negative but after only a week during my second break my pcr bounced up to .014. I know low but in my mind I was terrified the number would skyrocket during the next three weeks. I made a change to Gleevec 400mg and started on Friday April 1st. Went to my onc last Thursday April 7th and I'm back to negative according to my results yesterday. Whether the one test was not accurate I don't know.

 

The other thing I wanted to let everyone know is about thyroid. I had a thyroidectomy right after being diagnosed with CML in Sept. 2014. After a few months of getting me to a suppressed level, I maintained the same level. During my second drug break, my blood pressure rose, and I was having heart palpitations. I called my endocrinologist and she had me go in to check my levels. I went hyperthyroid with a tsh level of .044 so she adjusted my meds. Man, I felt like crap.

 

I mentioned all this to the pharmacy at my onc's office (Northwestern). He said they see Gleevec effect synthroid's effectiveness the most, but being off Sprycel must have made my synthroid more effective hence hyperthyroid. Just some information on those that take synthroid and are on a tki. Especially as more people are trying to go tki free or lower dosages.

 

[Trey]

The positive number is high enough to be a true number, so it likely was detectable.  This is why most people who try cessation will be disappointed.  You may still be able to find a lower dosage which works sometime in the future.

[mlk210]

Trey,

 

I thought I would continue to rise during the next three weeks being off medicine after I became detectable. Can I really be undetectable after only a week on Gleevec? I had prepared myself for the worst (losing MMR), but the pcr test came back sooner than it usually does.

[gerry]

Some people continue to have low level readings of CML when they come off. Docs are okay with this as long as it doesn't go up past .1 which is the loss of MMR.

[Trey]

Trey,

Can I really be undetectable after only a week on Gleevec?

 

With those low level numbers, plus the variations in the PCR testing, that is possible.

 

Although a very few docs who run clinical trials may be OK with losing response up to MMR as an experiment, most docs and also patients are not, and I believe there is a good reason for that.  There is not enough solid evidence to show that allowing loss of MMR is a reasonable approach. 

[scuba]

With those low level numbers, plus the variations in the PCR testing, that is possible.

 

Although a very few docs who run clinical trials may be OK with losing response up to MMR as an experiment, most docs and also patients are not, and I believe there is a good reason for that.  There is not enough solid evidence to show that allowing loss of MMR is a reasonable approach. 

 

Dr. Cortes uses loss of MMR as his criteria. When I was in my personal cessation test, my PCR was climbing up and down and trending towards MMR, he was comfortable with me continuing my test. I decided it was time to verify that the reversing the trend would occur - and as you know - it did. I will try cessation again, but will wait a longer time interval this time before my next attempt (and then I will likely try one month one/ one month off and then keep dragging out the time interval). 

[gerry]

My doc works to the information coming out of the trials, so loss of MMR would be the benchmark for me to restart a TKI. I continue to be tested every two months at the moment as he is conservative in his approach.