When the lab says the PCR can detect 1 in 10,000 is that considered 4log or 5log? I'm thinking 4 but my math is escaping me.
Posted 05 June 2013 - 08:04 AM
Posted 05 June 2013 - 08:52 AM
Before you even read this you new peoples, I don't have CML, my wife does. Carry on.
In the words of a famous guy that works out in Portland: "Who cares?".
Seriously. A zero followed by a decimal point followed by a zero is all good, and that is all the average person should expect in this whole mess. Logs don't make anyone feel better, they don't cope with side effects, they aren't determinant of sudden change for the worse, they don't do anything. They are, unfortunately, an artifact of the earliest days of his work, and they got out there, and they got repeated ad nauseum until they became some kind of cult of their own it seems.
One of the best things we got out of driving from this coast to his coast was that long lecture, that long pep talk, and the even longer question and answer time with him. Basically, below zero is below zero, and there isn't much else you can do. If you are going to have a problem you are going to have a problem, and the problem doesn't read your PCR and decide not to be a problem because you have 2.47495 more of a log reduction than the next person. If you develop a problem it won't be fixed by getting you to the next log.
"Problem" usually almost always and with not much exception happens first 12 - 18 months. After that, the "problem" is not correctable it is the consequence of the utter randomness of this stuff, there was no log reduction that would have prevented it, there is no log reduction that will fix it now.
That guy is happy with my Mrs taking Neupogen for the rest of her life, which according to him, will meet and probably exceed actuarial tables for a person of her genetic makeup and habits. He is happy with her PCR not just being the u that it has been for years now, but if it is above u like a few times it has been.
I see you having some tough tough times brutha, and it is painful. It is hard enough, it is almost impossible to console someone, hard to punch their chin upward, hard to tell someone that is going through what not that many people are going through that things will "be ok". He can do it, because well, he knows what he is doing. I offer it, but it is pale, weak compared to what you are experiencing and trying to do.
From him to us: fergettabout the stupid numbers you see tossed about as though by researchers fresh out of the microscope farm, because those things are just that, researcher things. This isn't a contest and the cancer just doesn't care what yer numbers are. Get it below zero and forget what everyone else is doing or has "achieved". There is no "achievment" in a group of people that all have the same cancer, there is only the utter randomness of it all and the "luck" for lack of a better word that we can take some meaning from.
I don't know where you are in this country or in this world. We were planning a trip to Yellowstone and made it a whole bunch bigger to get to Oregon and see him. Why not? Wyoming is a whole lot closer than New Jersey, right? So it was well worth it, it was worth every bit of the appointmenting and the timing and the work it took to get her there, the records and blood stuff and everything. We would recommend it highly to anyone doing this, if you can, if you can get the time, get out there and see him. It could make a world of difference in how you look at this whole mess.
Good Luck Lucky. I am thinking about you all the time, for whatever karmic value that has. I hurt that you hurt over some numbers. My patient is able to not hurt over those numbers, she will know when to do that. I wish and hope the same for you and everyone else that has to come here.
Posted 05 June 2013 - 10:04 AM
There are several answers:
1) 4 log is the stated limit of sensitivity at that lab
2) The lawyers at that lab truncated the real sensitivity but it is probably at least 1: 100,000 (most likely answer)*
3) What RCT says (always entertaining, and true enough)
*All PCR equipment and reagents are relatively equivalent these days so whatever the answer is, it is generally true for all of them. The reality is that PCRs are an estimation process. The makers of the equipment all say their equipment is not to be used for diagnostic or medical treatment purposes, only for lab research. And the biggest unknown in the PCR process is the shipping time and storage conditions, not the equipment.
Posted 05 June 2013 - 12:48 PM
You make some really good points RCT and I appreciate them. The reason I asked was in trying to determine if I do in fact have a problem. I was below zero and now I am not below zero, so the question I am trying to answer is if this lab is more sensitive and seeing something the other lab did not see but was always there, or if I did in fact go up. If I went up, I'm trying to figure out if it's a lot or a little and that is where the number of logs came in. Basically I am trying to compare lab results from one lab to another without any frame of reference, so I am making up hypothetical reference points. It's kind of stupid really, but I guess in some ways it makes me feel like I am doing something while waiting for the next test results to come back and tell me if something changed and I have a problem or not.
It's pretty ridiculous, I spend a great deal of time worrying about how much time I'm going to get.
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