Others on this forum may add to the answers and offer other questions as well:
Here's a list of my questions. After much study of my PCR results,, some of my questions have been answered.
1. Have I been Imatinib drug level tested?
I suspect not. It usually is not done unless there is an issue. And you are responding.
2. Can to much Imatinib be toxic?
Yes. All TKI's are toxic. Toxicity increases with dose. So a trade-off between treatment and toxicity.
3.% if people who become Imatinib resistant?
Usually within the first year although can happen later. upwards of 35%. Will be interesting to see how your doctor answers.
4, What % am I in for heart risks, in taking 600 mg Imatinib for 29 months?
This is an interesting area of study. All TKI's have heart risks - but is easily masked by diet/exercise which exposes you to TKI risk. In other words, eating well will minimize your heart risk due to your lifestyle. Impact of TKI will be in the "noise". It is the main reason I switched to a keto based diet and no longer eat any sugar or processed carbs. I don't eat many carbs at all anymore. Except on special occasions!
In my case, having been diagnosed with CML was a life saver (can't believe I am admitting this ...). It led to my first, in a long time, full physical and blood chemistry tests which exposed all kinds of issues to do lifestyle/diet. I completely reversed these (pre-diabetes - gone, high blood pressure - gone, metabolic syndrome - gone, high bad cholesterol - dropping. Good cholesterol - increasing, etc. etc.). If I had not developed CML, I likely would have been a heart attack patient or dead. My father had a quadruple bypass and died six years later of a stroke. CML woke me up.
So you should ask your doctor what you can do to improve your overall health so that taking a TKI does not add an issue. Also - take a stress test to reveal any Qt elongation which may be caused by TKI's (especially Nilotinib). As long as subtle heart issues do not show up in stress tests, you are in a good spot regarding TKI heart risk.
5, Possible change in meds, lower dosage or different Imatinib?
If you find you are stuck around 0.1% PCR changing drugs could be considered. Personally, low dose Dasatinib worked for me (20 mg).
6.% error in testing results? Mine are not consistent?
Can be as high as one log (factor of 10) - So PCR levels beyond the second decimal place are pretty meaningless. And changes to PCR of around 1/2 log is in the noise of the test. However, trends of increasing or decreasing are noteworthy. And there is the psychology - no one likes seeing numbers going up even if it is in the noise of the test. Big jumps should require a re-test to confirm.
7. What level mmr am I?
You are barely MMR. 0.1% is the threshold. Your doctor should confirm.
8. What was beginning white blood cell count? and what kind?
Good question to ask. Ask for your CBC test results each time blood is taken. Pay attention to the "absolute" numbers. You may find you have a "new normal" for you which is due to the drug "suppressing" your normal system. This is a side effect and for many not an issue. My red blood is slightly anemic - always has been once I started a TKI. So I won't be running marathons - but feel fine otherwise.
9. What is my goal, and time frame?
at 12 months - great to be MMR. Slow responders are also doing well at 18 - even 24 months. Plateaus are normal too .... you can stay level for months and months and then suddenly start dropping further. Over time, there is evidence CML can burn itself out - but takes years and years.
A good goal is to achieve PCR < 0.01% and stay there or below for two years - ideally 5 years (recent research, Dr. Cortes) before stopping drug treatment and test for treatment free remission.
10. Hepatitis B tested?
Why? Have you been exposed?
11, What is most accurate CML test? Have I ever received FISH test?
DNA PCR is the most accurate CML test, but I suspect that is not your question. Your PCR's are at a level where FISH testing is probably not necessary. You absolutely should have had a FISH test at diagnosis and for the first year while your CML was improving. FISH is taken (or should be taken) as long as it is positive (i.e. > zero) and PCR is above 1.0% Once FISH falls to zero, it is no longer relevant. PCR takes over as the canary in the mine shaft. If you haven't had a FISH test, then you probably don't need one now, but I would ask for one just to have the data confirm that FISH = zero.
12. Is cutting Imatinib in half advisable?
No.
13. Has my spleen been tested for enlargement?
He would feel your abdomen and check for size and tenderness. At your CML level, your spleen is likely fine. It becomes normal very quickly following successful TKI treatment - long before FISH or PCR drops in fact. Mine was normal even at diagnosis (to the touch that is). Chances are he was groping your abdomen when you were first diagnosed.