Numbers moving in the wrong direction again. At least the numbers are still small.
Posted 05 July 2011 - 12:21 PM
Numbers moving in the wrong direction again. At least the numbers are still small.
Posted 05 July 2011 - 12:51 PM
I think you're definitely allowed a stronger expletive than that. Really sorry to hear that the PCR is being uncooperative. Small, bouncy and annoying. Sounds a bit like my youngest.
It may help put things in perspective to know that the guy who invented the PCR test came up with the idea whilst tripping on acid. Then again, it may not.
Posted 05 July 2011 - 12:57 PM
Phil, you still crack me up!! I'm giving myself an hour to be depressed and feel sorry for myself. Then it's time to move on. Hmmm. .. wonder if there are any bon bons around the house?
Posted 05 July 2011 - 01:10 PM
Sorry that is very frustrating. Emotionally it is so nerve racking to see the numbers moving around. Hopefully they are bouncing around in the low range, in which case it is just CML messing with your head. In terms of disease control, unless you are increasing by full logs then it doesn't appear the dancing PCR means anything. As my doctor put it during our last visit "I don't believe in CMR, our level of testing can't prove it". Try not to let it mess with your head too much.
Posted 05 July 2011 - 02:12 PM
Hopefully just the normal "bounce" when low. Good vibes from me to you.
Posted 06 July 2011 - 04:39 PM
When that guy won the Nobel Prize in Chemistry, I overheard professors in the chemistry department at Berkeley complaining that "he's not even a real chemist, he's a surfer!"
He's the Rodney Dangerfield of chemistry....
Posted 06 July 2011 - 04:41 PM
Sorry, Marnie, I know that's NOT the way you want the numbers to go. Just remember that's there is statistical noise in any measurement, so small bounces up and down should be okay.
Posted 06 July 2011 - 05:23 PM
Thanks, guys. . .I guess I'm pretty much over it. Didn't find any bon bons around the house, but alcohol works pretty well, too. I'm still at .008, so I can't complain too much. I didn't have those zeros while I was on Gleevec and they look pretty darned good to me. I guess I was assuming that my second post-Sprycel test would put me down to .000. I used to be a competetive runner. . I just HATE not coming in first!!
In any event, I really can't complain about things too much. The worst thing that's happened recently is that I went over the handlebars of my dirt bike and have a few bruises. . but worse than that, I am now ahead on motorcycle drops in the spousal competition. Dang!
Posted 06 July 2011 - 06:07 PM
I'm so sorry you have to deal with this too. Like you haven't had enough crap and more to come. Thank God my numbers have been stable since dx and treatment, It must be so scary. You have been under a lot of stress could that have something to do with it? I like Phils explanation the guy was out of his mind and you definitely should use a better expletive you earned it. I'm looking all over the house for some bon bons to send you but I'll probably eat them before they get to the Post Office. I like bon bons but my weakness is jelly beans. If I find the bon bons I'll make Ron grab them and send them to you asap. He runs a lot faster than me. And we live only 5 miles away from the airport. Hang in there like Traci said the guy might be snowboarding too. I think the people on this site have more knowledge about cml than the Docs. do. Take care everything will be ok just a few more grey hairs. lol Billie
Posted 06 July 2011 - 06:12 PM
And you're worried about some bloodcells! Hell you're gonna break your neck first. Billie
Is that .008 blood count or alcohol level! Maybe you got them mixed up.
Posted 06 July 2011 - 06:23 PM
Billie. . you crack me up, too! I've had way too many glasses of bubbly this afternoon. I should not be typing at the computer. I just sent an e-mail to my boss. That's usually a really bad idea if one has consumed any amount of alcohol!! Tomorrow will be an interesting day. . .on the way to my onc's office, I need to stop by admin and get all of the paperwork for the new health insurance program done. . .the district has actually gone out of its way to help me out and have set up a special FSA account pretty much just for me to access. I guess being the annoying squeaky wheel at the negotiations table did something after all. On the other hand, that won't help me out with the nasty $4000 out-of-pocket hit in September. Then after that, I head off to see my onc to go over test results and set up a strategy. I'll have to switch plans from Sept 1 to Dec 31, so that will mean new doc, new pharmacy, etc. . .but then on to my husband's plan, and back to the current doc, but new pharmacy. ARghhhh!! Now with my numbers going the wrong direction, I'll need to see if the current doc will do a PCR test in 2 months, otherwise it would be 6 months before seeing him again, and with the switch in labs, don't know if I can trust the results. Again. . .Arghhhhh!! Also need to decide how much I'm going to push for a BMB. Don't know if it's the thing to do or not. I always get paranoid about it since i"ve only had one at diagnosis. I'm tired of having to think about all of this. . .I do NOT feel like I'm on summer vacation. Doesn't help that I've been working on school stuff all day for the last week.
I will send you some jelly beans if I can find any. . .
Posted 06 July 2011 - 06:27 PM
So what are you bitching about? Billie
Posted 06 July 2011 - 06:39 PM
I'm behind in the competition:
Marnie - dropped bike = 2
Tom - dropped bike = 1
I HATE losing!! Last year, I dropped my bike fewer times, and took fewer swims in the kayak. This year, the competition is not looking good at all!
Posted 06 July 2011 - 06:55 PM
When behind in competition it is always appropriate to play the cancer card! It is probably the only benefit to this BS, so why not use it! However, weigh carefully the benefit/cost ratio. You don't want to blow the cancer card on just anything - it has to be really worth it. Then dust it off and carefully put it away until the next time you need it.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 06 July 2011 - 07:03 PM
"I dropped the bike because my hand cramped up. . .those damned Gleevec side effects (oh, yeah. . I don't take Gleevec any more!). And I could really use a back rub right now, sweetie. . .I feel the nausea coming on. A back rub would really help alleviate the discomfort". Hmmmmm. . .I think I need to work on my delivery. . .
Posted 07 July 2011 - 12:44 AM
Sorry I left so abruptly earlier. I had one of my down days today.We all get them. Sick and achey,I stayed in bed all day I got up for about an hour then fell asleep again. I just woke up again I feel a lot better, just hope I can get back to sleep tonight.
Tomorrow when you have your coffee could you please decifer what you said today?
I like your idea to use the cml card on occasion. I might use it pretty soon I haven't done my spring cleaning and we're halfway through summer. Boy if I could get merry maids in here just 1 time then I could stay caught up. Ha I'd have to clean before I'd let them in. Ron is such a great help but I feel guilty. I get up in the morning and I'm good for about 3 or 4 hours then I'm shot! Is everyone else like that? Maybe it's because I'm older. Gotta blame it on something.
Take care both of you I'll catch you both tomorrow. lol Billie
Posted 07 July 2011 - 03:23 PM
We would like to think that the progress might be predictable. But it is not.
This is what my journey has looked like:
My reccomendation is to begin drinking heavily. (Borrowed from Animal House)
Posted 07 July 2011 - 03:27 PM
I tried that strategy last night, gunner. . .I have a headache today. Don't think that will stop me, though. Just got back from seeing my onc. I need a drink.
Posted 07 July 2011 - 03:30 PM
Interesting graph and certainly drives home the point. The only question I have is if I am reading the log reduction axis correctly? Are you saying that your lab is tracking to a 6+ log reduction? That would be unbelievably sensitive. If that is the case, would you mind sharing the lab you are using? I might want to have my blood sent out to them if I ever consider cessation. My lab, which is in a world renowned cancer center only measures out to 4 log reduction.
Posted 07 July 2011 - 03:56 PM
Here is the raw data. This comes from the Mayo lab in Rochester, MN. They report the Mayo % and the International.
I calculate the Log reduction as follows:
Reduction = - LOG10(recent%/17%) calculated using the Mayo % numbers. When I look at the actual calculation, I put in .00001 for a 14Feb reading. Otherwise the calculation gives an error. Mathematically, it may be more accurate to use 0.0005. Either way, it is below their detectable level. I though it might teeter or bounce a little, but I had a second PCR test come back undetectable a month ago. I have them run the test every three months. Recreational data gathering.
Notice also that the International number must have some strange rounding function at play. I only look at the Mayo numbers.
And Moses said to the animals, "Go forth and multiply." Two snakes responded "Moses, we are but simple adders!" Moses then went into the forrest, chopped down a tree, and made a picnic table for them.
Because, as everybody knows-
With a log table, even adders can multiply!
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