Sunshine, as to your bouncing, there could be any number of factors - when your samples get processed and all that jazz. Also, your numbers are all pretty near to each other, the April one probably being the outlier, if you had to choose. They're all around 1.0 which is not terrible, as you say, but I know what you mean about wanting to be MMR "on time" at 18 months. I think it's just around the corner for you. You're at about 17 months now? I was 22 months when I reached MMR on Sprycel and I am now (just now) PCRU four years later. Some of us are just slower. You're already in a safer place than you were when you started out, and you're going to get even better. You already know not to blame yourself about skipping pills - it's a very human failing - there's an odd counterintuitive thing that kicks in when you realize you have to take a pill every day forever - something inside you makes you want to rebel. Anyway, the truth is probably that your Oct - Jan "jump" was not due to spotty pill-taking anyway - I don't think CML reacts that fast. But at any rate, I think your onc is right to hold steady and wait until your next PCR to determine the course ahead. Remember, not all transitions to other TKI's will be as bad as the experience you had with Sprycel - just because you had a rough time adjusting that time doesn't mean you will again. Many people on here have had nary a blip, or even instant relief on changing. I was one of those people sick and miserable on Gleevec from the very first pill, so when I switched to Sprycel I waited for the reported headaches - nothing. My puffy eyes got noticeably better within a week. I did get some weird skin bumpiness patches and peeling cycles but they ended. All in all, my med change was a positive one and yours - if you need to change - may be a pleasant surprise as well. Look at it this way - you have just as much chance to have a good experience as you do a bad one. True, right? So keep your eye on the half of the glass that's full. But as I said, I'll bet that you're just in a plateau with your numbers and that MMR is coming right up for you soon.
As to the cardiac stuff, I'll let more medically savvy people chime in here. But I do think it's terrible to let you twist in the wind without an explanation of your echo. These docs! I'm convinced that the doctor-patient perspectives run parallel and never intersect. While he's in Cancun for two weeks, you're in a sleepless fret for what feels like two months. Cling to what he said about "nothing major," discipline yourself to stay off the Internet, and vow to demand a complete explication of the findings and what they mean going forward for you, ASAP.
I know what you mean about feeling like you're falling apart, one piece at a time. The doctors and medical technicians who write the reports - millions of them - and see these test results and patients day after day have no idea what it feels like to be the very specific individual whose name is at the top of the paper. There was a period of time there where every test I took revealed a suspicious something else that led to another test - and another WAIT - to rule something out. I had a couple of years that were just one darn thing after another, and I was so worn out in spirit that I couldn't think or see straight. I honestly think I had a form of PTSD. Go ahead and let yourself feel down and discouraged - feel what you feel. We've all been there. What you need is some good news and a way up and out. You need to put together a few months in a row when nothing bad happens. I think you are going to get that good news on your next PCR, and if you need to change meds - yay, we have several to choose from. You're going to get an answer on the breathing thing and there will be something you can do. You are not going to stay discouraged. Things are going to get better. No going back to that couch! Unless it's the psychotherapist's couch - counseling can really help, no joke. I was about at your point when I had a tearful hour with a cancer center counselor who gave me a name of a therapist - on the drive home I felt happy, truly happy through the tears, for the first time in almost two years. Hope this helps; keep us posted.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
