64 replies to this topic

[rcase13]

Yep every time I felt funny i would run and grab a PCR test.

[JohnFromChicago]

Yep every time I felt funny i would run and grab a PCR test.

 

Same here I would go broke buying them too as I assume they would be well over $500 if such a product existed.

[PhilB]

Here you go:

http://www.ebay.com/...C8AAOSwqrtWm88X

[rcase13]

Here you go:

http://www.ebay.com/...C8AAOSwqrtWm88X

Now I just need to draw my own blood.     

[JohnFromChicago]

Here you go:

http://www.ebay.com/...C8AAOSwqrtWm88X

 

Wow! For some reason I imagined it being way larger and more expensive haha. I would love to see the look on my girlfriends face if she woke up and came out to the living room and saw me settings this up. Good thing it's more than $1000 or I might have considered buying it haha

[rcase13]

Yeah I have a huge super computer in mind with all kinds of smart people in white coats working on it. If this is all it really is then why does it take so long for results?

[scuba]

... it's not the device (cost), it's the prep work. Prep is the time consuming, labor intensive part and fraught with errors at almost every step. 

 

http://www.thermofis...r-pitfalls.html

[JohnFromChicago]

... it's not the device (cost), it's the prep work. Prep is the time consuming, labor intensive part and fraught with errors at almost every step. 

 

http://www.thermofis...r-pitfalls.html

 

 

Wow that sounds incredibly sensitive and prone to failure. 

[scuba]

Wow that sounds incredibly sensitive and prone to failure. 

 

Which is why, John from Chicago, you would be wasting your time trying to over analyze a few data points. One blood sample tested repeatedly with the same equipment and procedure can yield data one log in variation (e.g. from 0.01% to 0.1%) - typically one-half log. The test just isn't that sensitive. What's important is trend over time from the same lab. And don't bother to extrapolate - it's pointless. Each test done 3 months apart has its own dynamics in terms of your actual blood situation and the testing protocol. The reason why PCR is significant early is that many patients experience log over log drops in PCR as treatment works. Then they plateau and play this 4 decimal place analysis game. Be smart and realize what the test is, what it does and how to interpret the results.

 

Here goes:

 

1.PCR > or = 100%  .... usually at diagnosis.

2. PCR < 100% > 1% ... trending downward.

3. PCR > 0.1% < 1.0%  major milestone - usually cytogenetic remission. Correlates roughly with FISH = zero. This is a home run. CML is under control.

4. PCR <0.1 % ... Major molecular remission (prognosis for long term survival greater than 95% ... Patients will die of something else not CML. )

5. PCR < 0.01% ... beyond the limit of the test and is sometimes reported as "undetected" or barely "detected". Some of these patients can enjoy thinking about stopping treatment - they might be able to have treatment free survival (TFR).

 

That's it. Third decimal place reporting is erroneous, meaningless and only serves to scare people.

[rcase13]

Does step 4 really apply to those of us that are young? Can you really take a TKI 30 years? I would think it would turn my organs to mush long before that.

[Buzzm1]

http://www.cmlsuppor...ponse-treatment

Q-PCR test results reported according to the International Standard

% of BCR-ABL1 detected by qRT-PCR testing ... Equivalent Log reduction from 100% I.S.

0.1% MR3

0.01% MR4

0.0032% MR4.5

0.001% MR5

[Gail's]

Trey, if under 1% is equivalent to ccyr and I am at 0.38, why is my FISH 3.5%. My oncs, both the old one & the new one I switched to were slightly perturbed at my pcr and FISH though the only thing done was to switch from gleevec to sprycel. The new onc says I'm really close but not quite ccyr yet. I'm not really stressed about it because I'm so much better than a year ago at dx..I just wish I really understood the levels of progress. I refer to the cml guidelines a lot if I have a burning question but most of the time I just remember where I was a year ago and am glad to be here today.

[PhilB]

if under 1% is equivalent to ccyr and I am at 0.38, why is my FISH 3.5%.

Maybe your rabbits are constipated?

[Trey]

Trey, if under 1% is equivalent to ccyr and I am at 0.38, why is my FISH 3.5%.

 

We are not all the same.  It is a rough equivalence.  There are many variables.

[Gail's]

I like the constipated rabbit theory. Makes sense!

[tiredblood]

Here you go:

http://www.ebay.com/...C8AAOSwqrtWm88X

Makes me glad my specimen is sent out to a CLIA lab. 

[thatguy]

I have actually been hunting twice pheasant and deer, but the hobby didn't really grow on me. Haha. I actually used to fish a lot when I was younger but haven't had much time for it since College (in Central IL). Shooting guns or bows is always fun though. I used to have a few motorcycles myself although never a dirt bike (always wanted to rent one though and hit up some trails). I was rear ended by a cab which put me in the ICU for 3 nights when I was 21 and I decided If I kept riding (at least in the city) I would eventually get in another accident and it could be fatal. Chicago traffic is pretty intense and cabs don't obey the rules of the road. I put about over 20,000 miles on my Yamaha R6 before the accident and decided that would be my last bike until I lived somewhere with less traffic. Going down on desert soil on a dirt bike does not sound fun though either. Thanks for the suggestions someone else actually told us to check out Rollin Smoke BBQ I am a big fan of ribs.

Yeah I'm not so much a fan of hunting either. I enjoy the machinery aspects most....the all you can eat option won't disappoint, and those ribs are the bees' knees. I hear you on bike move, too... but hey, look at life in general, never know what's at the next intersection.

[PhilB]

I like the constipated rabbit theory. Makes sense!

But not if you've never heard the PhilB 'Rabbits' explanation of CML testing!

[surfdaisy76]

I haven't...
And if it's a "duh" I should just get it...I shall blame it on brain fog!

[PhilB]

Okay, well some years ago I came up with an alternative way of thinking about CML testing for those who couldn't handle all the long words in Trey's explanation. 

Imagine your farm is infested with rabbits.  When first diagnosed there are so many of them that they are easy to spot.  You can even do cytology tests ( the one where they tell you how many of 20 cells are leukaemic) -  and they only work if you can spot 20 rabbits actually in the act of reproducing.  As your bunny eradication programme takes effect it becomes harder catch enough bunnies in flagrante, so you move to plan B: the FISH test.  This involves nuking the rabbits until they glow in the dark, then you can just look out the window and count them as they hop past.  Eventually though, there are so few bunnies left that your chances of actually spotting one when you happen to look out the window become too low for this test to work too.  At this point we have to get crafty and move onto the PCR test.  Instead of trying to count actual bunnies, you go out into the field and count rabbit droppings instead.  You then compare the amount of rabbit poo per square metre to the average from previous, internationally standardised rabbit poo experiments to estimate your rabbit population.  This is why we talk about 'log reductions'.