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.
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Suddenly dropped out of undetected status
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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
Hi Joe,
Hope you are well. Have been meaning to ask, how did your doctors appointment go on the 9th December.
Are you trying another tki ?
I was discharged after 15 nights in hospital last week, so nice to be home. I am on immunotherapy at the moment. Finishes in about
two weeks. I have a bone marrow biopsy early in January, and a doctors appointment on the 14th January. We will see what they
come up with then.
All the best for now
Paul
Thanks for asking Paul. Glad to hear you are out of the hospital. Keep the faith. Like my wife always says to me, it never happens the way you think. Your wife Denise seems like a lovely person, you’re lucky to have her by your side.
As for me my doc said as I expected. Stay the course and test again in 3 months. I am feeling pain in my upper right humerus which I experienced when I was first diagnosed. So needless to say to say it’s a mind-f**k. If it persists and gets worse I will push to test sooner. It’s been a while since I’ve been here thinking thoughts of nearing the end. What a waste of time. Otherwise I am good trying to stay positive. With all the chaos going on in the world it does provide for constant distraction.
Keep in touch,
JP