Thanks for the replies and insight.
Dan you asked some specific questions so I will try to respond. Symptoms range from mild to severe in different ways based on what is going on. It shows itself physically but I am so used to it I don't know that I really recognize the pain. I complain a lot but I actually have a high tolerance for pain. I get it in my neck shoulders and back as well as abdomen and various other areas. I have chronic pelvic pain which seems to have been a result of my stress post diagnosis. This is a situation where my abdominal muscles and my pelvic floor muscles are clenched so tight for so long that they develop trigger points and cause nerve entrapment. I am literally a tight ass
. The tension causes inflammation that was actually squeezing my prostate and causing my PSA to rise to 6.6 making me think I had prostate cancer. Thankfully over the last two years it has steadily declined as I have worked on relaxation techniques and taken anti-inflammatory drugs. My last PSA was less than 1.5, however the pain persists.
Beyond the physical, for me the harder part is the mental. Symptoms range from intrusive thoughts, to fear, anger, panic, and depression. My mind goes into hyperdrive as I try to run through various scenarios. I have to do this until I get tired of it and can't do it anymore. Then I'll typically have smaller waves over time until it settles down and I get used to the issue. It's usually triggered then by another test result or something. Good test results calm it. I know from my reading that this is classic fight or flight response. My primitive brain senses a threat (i.e. Bad test result) that suggests I may be in danger and triggers the chemicals that drive the fight or flight response. Of course the threat is not one that you can fight or run away from so this sends the brain into hyperdrive as it tries to work through the chemical reaction. Basically the panic attacks are the way the body burns it off, sort of a virtual fight/flight. That process is hell to go through and will leave you with mental and most definitely physical pain as your muscles are in a constant state of tension ready to fire.
But in the modern world we don't do anything. Maybe we try to exercise, which is the best bet because it gives the body the chance to do what it was designed to do. But mostly we just sit and let our complex and emotional brain try to deal with it.
In my head I see my wife struggling to raise my kids alone, the hurt they have to endure by losing me and it is complete torture. I know why it's the way it is but that doesn't make a difference because the brain has a tricky way of making you believe it.
With uncertainty I look for logic, I see a pattern, in this case my numbers started climbing, they increased my dose and they dropped only to start climbing again requiring yet a higher dose. Now at 100mg we are not looking at going any higher and it appears it is climbing again. All I can see is the pattern.
So I rationalize it about as best I can. This is either test variability and the next one is going to drop or it will go up and confirm resistance. So what does that mean? Most likely a mutation, or maybe the way I process it. Nothing I can do about processing so just move to another drug and hope for best. If it is mutation, hope it's not T315i. My rationale there is that I have read dasatinib has no effect on t315i, since my numbers drop when I take a higher dose, that would seem to suggest the dasatinib has some effect hopefully making it less likely that it is t315i. Best case if it is a mutation is that it is one that is specifically resistant to Sprycel and Tasigna would work. That might also mean it was something I always had and Gleevec was working on it and lower doses had nothing to do with it.
All in all I obsess until I'm exhausted and then I move on until it flares up again.
It can be quite miserable, but I try to make the best I can and I try not to let it affect my outside life too much. It hasn't interfered with my work too much and I try to be good in front of my kids. I try to keep hidden from wife, nothing particularly attractive about a man in his weakest moments but sometimes she sees it. She cares about me so she is supportive. Mostly I sound off with my mom. She has similar challenges with anxiety so she gets it. Really nothing helps other than playing it out until I'm too tired to think about it anymore. When it's real bad I pop a Xanax, but that only helps a little
So that's about it for now, Talk soon, hopefully with better news.
Hope everyone is doing as well as they can.