Re: 's PCR test - TIMOTHY and MARCOS

[Guest guest]

and Marcos:

Thanks for your interpretations of 's PCR test.

Everytime I think I grasp the concept, I have it all straight in my head for a

minute or two, then lose it!

So--thanks so much for the help.

meets with his onc Friday to discuss everything, up until now it has all be

via email.

He also is scheduled to get his skull bone flap replacement surgery next

Tuesday. His pre-op appt was yesterday. When he had brain surgeries due to the

hematoma in his brain, upon the diagnosis of the CML in July 2006, the team of

docs who operated had to remove part of his skull to let the brain swell outward

and release pressure. This is what saved 's life. They removed a part that

is about the size of small tangerine, and so he is finally getting it replaced

Tuesday! It sounds so strange. The surgery was scheduled a couple times

before, but other events kept affecting it: the neutropenia early on with

Gleevec, then the switching to Sprycel. Basically, he needed to be " normal " in

terms of bloodwork, etc for a couple of months before having surgery. And, so he

has been doing great on Sprycel for months now, and now the surgery is happening

next Tuesday. He is getting a titanium piece put in. Surgery is pretty routine,

a one-night stay in the hospital.

I think now that is seeing some good results with Sprycel, and once he

knows his brain is again protected (for the last year and a half, knowing his

brain is not protected by bone, and exposed to bumps and dings, it has been very

bothersome to him!), once he gets through the surgery and recovers from

that...then finally finally finally he might be able to take a deep breath and

put the events of 2006 behind him.

Thanks again!

@...: timothyfarley16@...: Sat, 12 Jan 2008

23:43:22 +0000Subject: [ ] Re: 's PCR test

>> > Hi guys-->

's doc just sent an email with the below message in it.> Can someone please

interpret for us?> > We understand that it did go down, thus an improvement

(which is all we actually really care about at this point)..> > Any

interpretation as to what degree the drop is, would be nice to know!> > Hi

,> Your PCR results form bone marrow 12/19/07:> Positive at 1.1 X 10-4; this

is reduced c/w prior value 4.2 X 10-3 from 10/17/07.The result is in scientific

notation. To conver to a whole number, put some zeros to the left of the 1.1.

Its to the left since x10 is a minus number. (Zeros to the right after the 1.1

if the x10 number was positive).Then skip the decimal to the left placing

between a zero and do this the number of times the shown in the x10. In this

case 4 skips.It would look like 0.00011 when done. This is the whole number. To

get it a percentage, back the decimal to places to the right. This gives a

result of 0.011%. It depends on the lab but this is at a point that many

consider as reaching or very close to a Major Molecular Response.

Congratulations.

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[Guest guest]

Hi ,

I just wanted to say that I'll be thinking about on Tuesday. I

didn't realize that he's been walking around with a piece of his

skull open for so long. Geez, I can see how that might have made him

a bit nervous!

All the best,

Tracey

>> >

Hi guys--> 's doc just sent an email with the below message in

it.> Can someone please interpret for us?> > We understand that it

did go down, thus an improvement (which is all we actually really

care about at this point)..> > Any interpretation as to what degree

the drop is, would be nice to know!> > Hi ,> Your PCR results

form bone marrow 12/19/07:> Positive at 1.1 X 10-4; this is reduced

c/w prior value 4.2 X 10-3 from 10/17/07.The result is in scientific

notation. To conver to a whole number, put some zeros to the left of

the 1.1. Its to the left since x10 is a minus number. (Zeros to the

right after the 1.1 if the x10 number was positive).Then skip the

decimal to the left placing between a zero and do this the number of

times the shown in the x10. In this case 4 skips.It would look like

0.00011 when done. This is the whole number. To get it a percentage,

back the decimal to places to the right. This gives a result of

0.011%. It depends on the lab but this is at a point that many

consider as reaching or very close to a Major Molecular Response.

Congratulations.

>

>

>

>

>

>

> _________________________________________________________________

> Share life as it happens with the new Windows Live.

> http://www.windowslive.com/share.html?

ocid=TXT_TAGHM_Wave2_sharelife_012008

>

>

[Guest guest]

Yes, for the last year and a half, CML has only been part of the journey--the

other part has been the brain stuff. However, he is still considered a " miracle "

by his team of doctors regarding the brain surgeries. Other than some numb

fingertips on his left hand (which we know is not Gleevec or Spyrcel, that is

from the stroke he had), he has no lasting affects of the brain trauma he

experienced. This, in and of itself, is a miracle in the medical world due to

how swollen his brain actually was, and how much pressure he endured, and the

fact that multiple times his pupils were hyrneating (pressure to the point of

possible immediate death). So, he cant type that great anymore (and really, is

one of the main reasons he doesnt post on this forum, typing is very frustrating

for him), and he cannot play the guitar like he used to. He has noticed

improvement and he thinks it is a matter of practicing enough to reburn the

pathways from his brain to his fingertips.

At his pre-op appt yesterday some of the nurses were eagerly awaiting his

arrival because they truly consider to be a miracle case. It's funny

because was the patient during all of that, and was pretty much " out of it "

for weeks in ICU and did not know the drama, the extreme highs and lows that his

friends and family and all his docs and nurses were going through. He became the

talk of the hospital, and the director of the hospital came by to meet us

because she had heard so much about his case. They gave us our own conference

room to occupy since we were living at the hospital for weeks! So, when we went

back to visit the ICU a month or so after he had walked out, he was a bit of a

celebrity in a sense, but even then I dont think he realized it. So yesterday it

all finally hit him, when he heard how they were talking! The nurses kept

telling him he defnitely is meant to be here!!! I hope he gets to stay around

for a while...

@...: traceyincanada@...: Thu, 17 Jan 2008

01:25:58 +0000Subject: [ ] Re: 's PCR test - TIMOTHY and MARCOS

Hi ,I just wanted to say that I'll be thinking about on Tuesday. I

didn't realize that he's been walking around with a piece of his skull open for

so long. Geez, I can see how that might have made him a bit nervous!All the

best,Tracey>> > Hi guys--> 's doc just sent an email

with the below message in it.> Can someone please interpret for us?> > We

understand that it did go down, thus an improvement (which is all we actually

really care about at this point)..> > Any interpretation as to what degree the

drop is, would be nice to know!> > Hi ,> Your PCR results form bone marrow

12/19/07:> Positive at 1.1 X 10-4; this is reduced c/w prior value 4.2 X 10-3

from 10/17/07.The result is in scientific notation. To conver to a whole number,

put some zeros to the left of the 1.1. Its to the left since x10 is a minus

number. (Zeros to the right after the 1.1 if the x10 number was positive).Then

skip the decimal to the left placing between a zero and do this the number of

times the shown in the x10. In this case 4 skips.It would look like 0.00011 when

done. This is the whole number. To get it a percentage, back the decimal to

places to the right. This gives a result of 0.011%. It depends on the lab but

this is at a point that many consider as reaching or very close to a Major

Molecular Response. Congratulations. > > > > > > >

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[Guest guest]

I can't even imagine the stress that you all went through during the

time of 's stroke.

I often say that it's sometimes more difficult to be the loved one than

the patient and your story illustrates exactly why.

Tracey

[Guest guest]

Hi ,

I just wanted to wish you two to get back to a more normal life. I had

it very easy compared to what went through. Please give him my

best,

Marcos.

On Jan 16, 2008 6:22 PM, Tracey <traceyincanada@...> wrote:

>

>

>

>

> I can't even imagine the stress that you all went through during the

> time of 's stroke.

>

> I often say that it's sometimes more difficult to be the loved one than

> the patient and your story illustrates exactly why.

>

> Tracey

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 630 5015 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/