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It can be a negative sign - but you will need a trend upward of several log increase to be sure.
Any PCR result < 0.01% is in the noise of the test. Your result can easily be a false "positive". You can continue TFR and monitor monthly as you are doing.
Hopefully the next result will be "undetected" again. TFR attempts can be continued until the loss of MMR (0.1%), but most patients, will restart therapy after 3 months of rising PCR.
K.tam for what it’s worth I too plan to try TFR in the next year or two. And from what I see on this site TFR is a mixed bag and for myself I don’t think I have a great chance for success. But, and this is important, if I fail TFR my hope is that I can at least reduce my dosage. So there are positive options that can still result from your TFR attempt in the event it does not work out.
Scuba,
I started TFR last week after taking nilotinib 150 bid for 1 year and reducing to 150 qd the last two years. Except for one PCR early on at <0.003%, I've been in CMR for those three years.
My onc at Mayo - Rochester, MN will restart me at anything at or above 0.01%. Over the past almost 16 years, I've noticed that Mayo seems to march to the beat of a different drummer. :)
Pat
Hi Pat,
All the best in your TFR attempt!
It does seem many in the research facilities (Mayo, M.D. Anderson, MSK) have their own protocols. 0.01% to 0.1% is typical for restart.
You are an excellent candidate for trying! I assume you will have your PCR tested once a month in the beginning?
Keep us posted.
Hi, Pojo, sorry about that. Scuba thanks for translating - I hate typing so I'll do anything I can to reduce keystrokes! I was diagnosed (dx) in late 2008 and started Gleevec in early 2009. 8 months later I developed TKI-induced hepatitis. I was switched to Sprycel after my liver settled down and was on it for 12 years but I was constantly dealing with pleural effusion the last couple of years even at the low dose of 20mg. I switched to Tasigna in Oct. 2020.
Good luck!
k.Tam, wishing you the best. Your next few PCR tests will likely help determine your possibility of a successful TFR. During the Stop Trials exceeding a BCR-ABL of 0.1% was considered clinical relapse and a TKI restart was in order. If you do happen to exceed 0.1% over your ensuing tests, wait for a confirming test before restarting your TKI and then also see if your doctor will allow you to restart on the lowest dosage of your TKI if a restart is necessary. When you lowered your TKI dosage prior to your TFR attempt, how low did you go and for what length of time were you on this lower dosage prior to your TFR attempt? This will likely help determine your doctor's willingness to restart you on the lower dosage if a restart becomes necessary.
I've been TFR for going on eight years but haven't had an undetected test for almost seven years. So far none of the positive tests have exceeded 0.1% but a number of them have exceeded 0.01%. My last test in October, 2023 came back as 0.01494. Any test of 1.0% (CCyR), or less, presents no risk to the CML patient.
Buzz
Buzzm1 your experience is priceless. I would have never have thought you can go that long without TKI while still having a low level response. This is encouraging news for K.tam.
Buzzm1 I also find it interesting that after 8 years off TKIs you are still posting to this forum. People like you and Scuba contribute greatly to the understanding of our treatment options. Thanks!