UPDATED: Kat, I don't want to mislead anyone, I neglected to post that I was "undetectable" for five years before I started TFR. During that time I continually asked my onc to reduce my dosage with constant refusal until I said that I was going to reduce my dosage with, or without her help, Still, after four years and ten months on Gleevec 400mg, the damage was already done; I should have begun reducing my dosage two years earlier; after one year of "undetected" status. This is why I am a very strong advocate for gradually reducing dosage as early as possible. It lessens the probability of suffering permanent damage from the side-effects of too much TKI. Younger CML patients typically tolerate high dose TKIs better than older CML patients but that shouldn't be an argument to take the standard high dosage any longer than absolutely necessary.
see the following addition:
2012 U, U, U, U
2013 U, U, U, weakly positive
2014 U, U, U, U (12/07 began dose reduction w/each continuing undetectable)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR U, 04/18 TFR U, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004, 04/16 TFR 0.0045, 07/17 TFR 0.0018, 10/15 TFR 0.0150
2019 01/15 TFR 0.0144, 04/15 TFR 0.0134, 07/15 TFR 0.0042, 10/15 TFR 0.0126
2020 10/13 TFR 0.0127
2021 04/15 TFR 0.0107. 10/13 TFR 0.0356, 12/07 TFR 0.0103
I want everyone to know that losing "undetected" is not at all unusual during successful TFR attempts.
I often post the following STOP STUDY:
STIM2 Stop Study: http://bit.ly/1IbwZuh 2011
treated only with imatinib; MR4.5 DMR of at least 2 years duration;. median age 61, 62 men. 62 women
76 of 124 (61%) remained treatment free ... However 41, of the 76, lost PCRU without clear molecular relapse (loss of MMR). In this so-called-fluctuation group of patients, 7 were found positive once, 6 twice, 12 patients between 3 and 5 times, 10 patients between 6 and 10 times and 6 patients more than 10 times confirming that BCR-ABL reappearance does not automatically mean clinical relapse.
Relapse After CML Treatment Discontinuation | Onclive https://shar.es/amW7LP
which is why, during TFR attempts, you don't restart until LOSS of MMR, 0.1 is verified and then you restart on the lowest dosage available. The reason: when CML is at a very low level, common after legitimate TFR attempts, a minimal TKI dosage will suffice to quickly return you to your prior status.
Kat, how long have you been on Sprycel 20mg and what has your PCR reading been during that time? You may very well be able to further lower your dosage without it having an adverse effect on your PCR reading. It would be worth a try. Six weeks before your next PCR reduce your dosage by skipping every fourth day, giving you an effective dosage of 15mg per day. Typically there is very little change in the PCR reading; any minuscule increase usually resolves over subsequent tests. The goal would be 20mg every other day for an effective rate of 10mg per day.
Buzz