42 replies to this topic

[Marnie]

Well, damn!

Numbers moving in the wrong direction again.  At least the numbers are still small.

[PhilB]

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.

Phil

[Marnie]

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?

[CallMeLucky]

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.

[Tedsey]

Marnie,

Hopefully just the normal "bounce" when low.  Good vibes from me to you.

Take care!

Teds

[Happycat]

Phil,

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....

Traci  

[Happycat]

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.

Traci

[Marnie]

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!

[Marnie]

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. . .

Marnie

[Marnie]

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!

[hannibellemo]

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. 

Pat

[Marnie]

"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. . .

[gunner]

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)

[Marnie]

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.

[CallMeLucky]

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.

[gunner]

Lucky-

Here is the raw data. This comes from the Mayo lab in Rochester, MN. They report the Mayo % and the International.

	Mayo	Int'l	Log Reduction
2-Dec-08	17.0000%	44.0000%	0.00
31-Mar-09	0.1000%	0.4000%	2.23
19-May-09	0.0090%	0.0200%	3.28
28-Aug-09	0.0060%	0.0200%	3.45
23-Nov-09	0.0100%	0.0200%	3.23
15-Jan-10	0.0020%	0.0040%	3.93
23-Feb-10	0.0001%	0.0004%	5.23
25-May-10	0.0002%	0.0004%	4.93
17-Aug-10	0.0007%	0.0004%	4.39
17-Nov-10	0.0010%	0.0030%	4.23
14-Feb-11	0.0000%	0.0000%	6.23

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!