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Suddenly dropped out of undetected status

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It appears I have dropped out of undetected status on Nilotinib. Right at the point I was going to try TFR on my 2 year anniversary my number jumped from 0.000 to 0.0165 which is higher then it was 2 months into when when I started on Nilotinib in 202205 when it was around 0.0197. Not sure what happened. I’m right back to where I was in 202203 when I plateaued on Imatinib. I have an appt with my doc on the 9th. Will discuss next steps then. Not sure what to do but I’m thinking of maintaining a holding pattern for at least a month or two till my next reading. TFR of course is off the table. I don’t see that in my future anytime soon.

Hi Joe,
Very sorry to hear of your setback. Disappointing to say the least. We just take these pills thinking everything will be alright. Then we get a setback.
We just have to deal with it the best we can. Good luck with the doctor on the 9th.
Keep us posted.
Thinking of you.

Paul

Much appreciated Paul. Yes one of the hardest aspects of dealing with a setback is wrestling with all the thoughts that flood the conscious mind. It’s not my first rodeo and I know the sooner I accept my state of being the more content I will be. To live in the present as opposed to the past or future is my goal now. It’s truly the only place I can remain calm and sane.

Hello Joe,

It’s Mrs Rambler here. I really love your ‘rodeo’ analogy. Thanks for the big smile.

I have an analogy I quite like to use, that comes from financial crisis days. We sometimes heard the phrase “kicking the can down the road”. I feel that’s what happens with some CML patients. In the nicest possible way, Paul is the can!

Even before Paul was diagnosed we had a family motto, but it’s even more relevant now…..
“Don’t put off the good stuff”.

Wishing you all the very best Joe x

Paul when do you go see your doc again? It must be this week. I am eager to hear what transpires. There’s still a lot left to kick in that can.

Hang in there bro,
Joe