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Hi

This is again- I had radiofrequency done about 4 weeks ago to my right SI

joint and it has helped with the SI joint pain.

The Doc radioed L5 through S3 on the right.

However I am still having sciatica and toe fasiculations of my 2,3rd toes on the

right side.

The Orthopedic specialist whom I sought out in Baltimore for a second opinion

seems to think that part of my problem in my Lumbar is that my Pedicules are

very small. She thinks that the break done in the lumbar discs and bone

spurring that has formed in the Right SI joint is from instability in the

Lumbar.

I can tell that any type of extension really sets of the sciatica-radiculopathy

down the right leg- whether its in the Dentist chair them having you put down

low and back, or being in the pool trying to swim- causing numbness in both

feet, or too much laundry and house work.

Since this has been going on for a good 5 or more years (and not had surgery) Im

wondering if fusion would give me the stability to stop those leg and foot

symptoms and allow me to do things like swim again.

My lumbar MRI's dont look bad- small central herniation at L5, small annular

tear at L4, dehydration noted at L3 and small central herniation at T12.

The Orthopedist thinks that if I could have an MRI sitting down it might show

more.

I will say that Radiofrequency has helped the level of pain in the SI joint, but

not the leg symptoms.

What are your thoughts about instability in Lumbar and does Fusion help with

that?

I am 44 now, soon to be 45- and thinking about the next step since this has been

going on quite awhile now.

Have a Discogram scheduled for March 9th.

in DC.

thanks!

(unknown)

spinedisorderssuppo rtgroup@gro ups.com

Date: Monday, February 16, 2009, 11:49 AM

I have had a tens unit for a year. It helps somewhat but it also

causes my skin to rash. I have used ice, heat, tens, and prayer but

nothing takes away the pain.

Life is what happens

to you while you're

busy making other plans.

( Lennon)

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it gives an electronic pulsing that causes your pain center to be blocked in

order to help you not hurt so much

(unknown)

spinal problems

Date: Monday, February 16, 2009, 11:49 AM

I have had a tens unit for a year. It helps somewhat but it also

causes my skin to rash. I have used ice, heat, tens, and prayer but

nothing takes away the pain.

Life is what happens

to you while you're

busy making other plans.

( Lennon)

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Share on other sites

So, I have a crazy story. I had a doctors appointment today. I got there,

and the first thing the doctor pulled out was a tens machine. I thought

that it was so strange that I asked about it today, and then the doctor

gave me one today! This thing is driving me crazy. I am finding it to be

more annoying than the pain, but he is insisting that I wear it nonstop

until Wednesday morning! Anyway, Have a great night everyone! Hugs, April

(unknown)

spinal problems

Date: Monday, February 16, 2009, 11:49 AM

I have had a tens unit for a year. It helps somewhat but it also

causes my skin to rash. I have used ice, heat, tens, and prayer but

nothing takes away the pain.

Life is what happens

to you while you're

busy making other plans.

( Lennon)

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Share on other sites

That is kinda weird huh

Sent from my Verizon Wireless BlackBerry

Re: (unknown)

So, I have a crazy story. I had a doctors appointment today. I got there,

and the first thing the doctor pulled out was a tens machine. I thought

that it was so strange that I asked about it today, and then the doctor

gave me one today! This thing is driving me crazy. I am finding it to be

more annoying than the pain, but he is insisting that I wear it nonstop

until Wednesday morning! Anyway, Have a great night everyone! Hugs, April

(unknown)

spinal problems

Date: Monday, February 16, 2009, 11:49 AM

I have had a tens unit for a year. It helps somewhat but it also

causes my skin to rash. I have used ice, heat, tens, and prayer but

nothing takes away the pain.

Life is what happens

to you while you're

busy making other plans.

( Lennon)

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Share on other sites

Hi April,

I used a tens unit in Physical therapy and then bought my own, it

helps

sometimes to take your mind off the other pain, but I have found (as I told

my Doc ) who

tells me to wear it everyday``all day``that you get used to it and it realy

doesn't help

much. Sometimes during very bad pain it helps alittle. But as you say it can

be problem,

especially since I need someone to help me apply the patches because my

range of motion is limited and I can't reach behind me to apply it. But they

like

you to at least try it out! Good luck with it!~~Donna

In a message dated 2/17/09 12:42:00 AM Eastern Standard Time,

nanny04@... writes:

> So, I have a crazy story. I had a doctors appointment today. I got there,

> and the first thing the doctor pulled out was a tens machine. I thought

> that it was so strange that I asked about it today, and then the doctor

> gave me one today! This thing is driving me crazy. I am finding it to be

> more annoying than the pain, but he is insisting that I wear it nonstop

> until Wednesday morning! Anyway, Have a great night everyone! Hugs, April

>

>

>

>

>

>

**************

A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100126575x1218822736x1201267884/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=fe

bemailfooterNO62)

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Dear Donna, Thanks for your response on the tens machine. My doctor told

me to use it 24 hours a day until Wednesday. I woke up in the middle of

the night,and my heart was racing and I couldnt breathe. Have you

experienced this before? My doctor did not give me much information about

this machine. I was just told to use it. Do you have any background info

on it that I should know about? Thanks for your time! April :)

----- ,nal Message -----

From: MysticMaidenxx@...

spinal problems

Subject: Re: (unknown)

Date: Tue, 17 Feb 2009 06:08:07 EST

Hi April,

I used a tens unit in Physical therapy and then bought my own, it

helps

sometimes to take your mind off the other pain, but I have found (as

I told

my Doc ) who

tells me to wear it everyday``all day``that you get used to it and it

realy

doesn't help

much. Sometimes during very bad pain it helps alittle. But as you say

it can

be problem,

especially since I need someone to help me apply the patches because

my

range of motion is limited and I can't reach behind me to apply it.

But they like

you to at least try it out! Good luck with it!~~Donna

In a message dated 2/17/09 12:42:00 AM Eastern Standard Time,

nanny04@... writes:

> So, I have a crazy story. I had a doctors appointment today. I got

there,

> and the first thing the doctor pulled out was a tens machine. I

thought

> that it was so strange that I asked about it today, and then the

doctor

> gave me one today! This thing is driving me crazy. I am finding it

to be

> more annoying than the pain, but he is insisting that I wear it

nonstop

> until Wednesday morning! Anyway, Have a great night everyone! Hugs,

April

>

>

>

>

>

>

**************

A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100126575x1218822736x1201267884/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=fe

bemailfooterNO62)

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Actually, I just saw one of those crazy commercials yesterday...very

surprising!

On Wed, Feb 18, 2009 at 10:56 AM, Michele <mb_rogue@...> wrote:

> Except for aspergers autism paper and these groups ive heard nothing of

> it. HOWEVER, i saw a can of chefboyrdee the other day that had high

> fructose cory syrup highlighted like allergens, but that is the only

> thing/product ive seen like that. and theyve pulled all of those ridiculous

> commercials that were on tv in summer/fall about how HFCS is as safe as

> sugar and totally natural. Would love to know more about that though and I

> think we should ban that and dyes...etc etc

> But anything that says made with caustic soda and adds mercury should by

> the govts words be not permitted in food sources!

>

> Michele

> http://www.myspace/com/mbrogue

>

>

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As far as devices are concerned, I would say the Russian Scenar is the best,

if you can find someone who knows how to use one.

Acupuncture and herbs (yan hu suo) are the best things that I have used for

pain.

(unknown)

spinedisorderssuppo rtgroup@gro ups.com

Date: Monday, February 16, 2009, 11:49 AM

I have had a tens unit for a year. It helps somewhat but it also

causes my skin to rash. I have used ice, heat, tens, and prayer but

nothing takes away the pain.

Life is what happens

to you while you're

busy making other plans.

( Lennon)

Link to comment
Share on other sites

Could be generating heat. Did you have unusually vivid dreams? There are

herbs for that, as well as point prescriptions. You could try something

cooling, like peppermint.

Re: (unknown)

> Date: Tue, 17 Feb 2009 06:08:07 EST

>

> Hi April,

> I used a tens unit in Physical therapy and then bought my own, it

> helps

> sometimes to take your mind off the other pain, but I have found (as

> I told

> my Doc ) who

> tells me to wear it everyday``all day``that you get used to it and it

> realy

> doesn't help

> much. Sometimes during very bad pain it helps alittle. But as you say

> it can

> be problem,

> especially since I need someone to help me apply the patches because

> my

> range of motion is limited and I can't reach behind me to apply it.

> But they like

> you to at least try it out! Good luck with it!~~Donna

>

> In a message dated 2/17/09 12:42:00 AM Eastern Standard Time,

> nanny04@... writes:

>

> > So, I have a crazy story. I had a doctors appointment today. I got

> there,

> > and the first thing the doctor pulled out was a tens machine. I

> thought

> > that it was so strange that I asked about it today, and then the

> doctor

> > gave me one today! This thing is driving me crazy. I am finding it

> to be

> > more annoying than the pain, but he is insisting that I wear it

> nonstop

> > until Wednesday morning! Anyway, Have a great night everyone! Hugs,

> April

> >

> >

> >

> >

> >

> >

>

> **************

> A Good Credit Score is 700 or Above. See yours in just 2 easy

> steps!

>

>

(http://pr.atwola.com/promoclk/100126575x1218822736x1201267884/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=fe

> bemailfooterNO62)

>

>

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Bobby,

To to photos and go to add photos, then go to add new.

If your cant get it send them to me and I will post them for you.

Aloha Sharon

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Thursday, February 19, 2009 5:00 PM

Subject: [ ] (unknown)

Hi, if someone will tell me how, I would like to post a picture. Bobby

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what works thte best is making crystal essence and using aormatherpay

combined...its very awesome

(unknown)

spinedisorderssuppo rtgroup@gro ups.com

Date: Monday, February 16, 2009, 11:49 AM

I have had a tens unit for a year. It helps somewhat but it also

causes my skin to rash. I have used ice, heat, tens, and prayer but

nothing takes away the pain.

Life is what happens

to you while you're

busy making other plans.

( Lennon)

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Share on other sites

Crystal Essense?

(unknown)

spinedisorderssuppo rtgroup@gro ups.com

Date: Monday, February 16, 2009, 11:49 AM

I have had a tens unit for a year. It helps somewhat but it also

causes my skin to rash. I have used ice, heat, tens, and prayer but

nothing takes away the pain.

Life is what happens

to you while you're

busy making other plans.

( Lennon)

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Share on other sites

yes it is an elixir made from crystals, to make liquid crystals.

(unknown)

spinedisorderssuppo rtgroup@gro ups.com

Date: Monday, February 16, 2009, 11:49 AM

I have had a tens unit for a year. It helps somewhat but it also

causes my skin to rash. I have used ice, heat, tens, and prayer but

nothing takes away the pain.

Life is what happens

to you while you're

busy making other plans.

( Lennon)

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Share on other sites

What does this do for it?

(unknown)

spinedisorderssuppo rtgroup@gro ups.com

Date: Monday, February 16, 2009, 11:49 AM

I have had a tens unit for a year. It helps somewhat but it also

causes my skin to rash. I have used ice, heat, tens, and prayer but

nothing takes away the pain.

Life is what happens

to you while you're

busy making other plans.

( Lennon)

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Share on other sites

it gives the crystal healing to the potion you are making. the power of the

crystal blends with the aromatherapy

(unknown)

spinedisorderssuppo rtgroup@gro ups.com

Date: Monday, February 16, 2009, 11:49 AM

I have had a tens unit for a year. It helps somewhat but it also

causes my skin to rash. I have used ice, heat, tens, and prayer but

nothing takes away the pain.

Life is what happens

to you while you're

busy making other plans.

( Lennon)

Link to comment
Share on other sites

Sharon, thanks for the instructions, but where do I find " add photos " ?  I would

like to try myself first,, if I can't I'll send them to you, but I need a little

more help.  Thanks, Bobby

a (Bobby) Doyle

From: Sharon & Denny <onthewtr@...>

Subject: RE: [ ] (unknown)

Date: Friday, February 20, 2009, 2:03 AM

Bobby,

To to photos and go to add photos, then go to add new.

If your cant get it send them to me and I will post them for you.

Aloha Sharon

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

ROBERTA DOYLE

Sent: Thursday, February 19, 2009 5:00 PM

Subject: [ ] (unknown)

Hi, if someone will tell me how, I would like to post a picture. Bobby

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Ok Bobby,

Go to " Photo " from this page (on the right)

Then on the left go to " Home "

Then go to " Photo " again

Then over on the right you will see " add Photo "

Let me know if u get that far.

Sharon

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Friday, February 20, 2009 6:10 AM

Subject: RE: [ ] (unknown)

Sharon, thanks for the instructions, but where do I find " add photos " ? I

would like to try myself first,, if I can't I'll send them to you, but I

need a little more help. Thanks, Bobby

a (Bobby) Doyle

From: Sharon & Denny <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net>

net>

Subject: RE: [ ] (unknown)

groups (DOT) <mailto:%40> com

Date: Friday, February 20, 2009, 2:03 AM

Bobby,

To to photos and go to add photos, then go to add new.

If your cant get it send them to me and I will post them for you.

Aloha Sharon

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

ROBERTA DOYLE

Sent: Thursday, February 19, 2009 5:00 PM

Subject: [ ] (unknown)

Hi, if someone will tell me how, I would like to post a picture. Bobby

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Hi Tracey , I am one yr diagnosed. She said my AST is my liver function. My

sheet says the normal range is 5-45 U/L mine is Nov. 08 / 32 and Feb. 09 /

273. I go every three months for routine blood work and PCR My platelet count

was Nov 08 - 217 Feb 09 - 69. It says the normal range is 150 - 450 x10 9/L

what ever that means???

Thanks Eva

From: Tracey

Sent: Friday, February 20, 2009 11:56 AM

Subject: [ ] (unknown)

Hi Eva,

Have you not had any blood tests at all between November and

February? That's a long time to go between blood tests for someone

who is fairly newly diagnosed. I had CBC's done with LTF (liver

function test) every 4-6 weeks for the first couple of years.

Do you have the reference range for your LD? I've seen some

reference ranges with the upper limit being 200 and other reference

ranges being 600. Either way, your LD is a bit high. Did you have

your ALP done? If your ALP is also really high it might mean that

your liver is being strained with the Gleevec. The LD alone, doesn't

specifically indicate that the liver is the culprit though because it

could be high for a number of reasons. If it does turn out to be

your liver, don't panic, there are options for you out there.

Also, do you have your platelet count? I'm curious why your MPV went

up so much since the last test.

There are so many options out there for you if you have a problem

tolerating Gleevec so try not to worry.

Tracey

>

> Had a doc appt. yesterday and I am a little scared . My onc has

stopped my 400mg Gleevec for the time being and I go back on March 9.

> Nov

08

Feb 09

>

LKCS4.4

LKCS 2.8

> Neutro

1.7

Neutro 1.0

> MPV

6.6

MPV 69

> AST

29

AST 273

> LD

712

LD 922

>

> She felt my abdomen and told me not to freak out but that my # " s

were all over the place..

>

> Eva

>

>

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First of all I will say Eva you need to have blood work done once a month

and PCR done every three months. Talk to your doctor about that!!!!

Aloha Sharon

_____

From: [mailto: ] On Behalf Of Eva

Sent: Friday, February 20, 2009 10:36 AM

Subject: Re: [ ] (unknown)

Hi Tracey , I am one yr diagnosed. She said my AST is my liver function. My

sheet says the normal range is 5-45 U/L mine is Nov. 08 / 32 and Feb. 09 /

273. I go every three months for routine blood work and PCR My platelet

count was Nov 08 - 217 Feb 09 - 69. It says the normal range is 150 - 450

x10 9/L what ever that means???

Thanks Eva

From: Tracey

Sent: Friday, February 20, 2009 11:56 AM

groups (DOT) <mailto:%40> com

Subject: [ ] (unknown)

Hi Eva,

Have you not had any blood tests at all between November and

February? That's a long time to go between blood tests for someone

who is fairly newly diagnosed. I had CBC's done with LTF (liver

function test) every 4-6 weeks for the first couple of years.

Do you have the reference range for your LD? I've seen some

reference ranges with the upper limit being 200 and other reference

ranges being 600. Either way, your LD is a bit high. Did you have

your ALP done? If your ALP is also really high it might mean that

your liver is being strained with the Gleevec. The LD alone, doesn't

specifically indicate that the liver is the culprit though because it

could be high for a number of reasons. If it does turn out to be

your liver, don't panic, there are options for you out there.

Also, do you have your platelet count? I'm curious why your MPV went

up so much since the last test.

There are so many options out there for you if you have a problem

tolerating Gleevec so try not to worry.

Tracey

>

> Had a doc appt. yesterday and I am a little scared . My onc has

stopped my 400mg Gleevec for the time being and I go back on March 9.

> Nov

08

Feb 09

>

LKCS4.4

LKCS 2.8

> Neutro

1.7

Neutro 1.0

> MPV

6.6

MPV 69

> AST

29

AST 273

> LD

712

LD 922

>

> She felt my abdomen and told me not to freak out but that my # " s

were all over the place..

>

> Eva

>

>

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Hi Sharon, My onc says that once I was stable then every 3 months is all that is

needed . Yesterday when she got these new results she said for me to come back

on March 16 and to take no medications until then , I had to insist on seeing

her soon because of my results so she said she would see me to repeat my blood

work on March 9th. She said that she thought my results were out of whack

because maybe I had picked up some kind of bug but she nor her nurse even took

my temp.My PCR have been done every 3 months and they were showing good results.

I have got myself all wound up I could not even face going to work today. I am a

little excitable I think. All of this stuff still scares me so much. Thanks Eva

From: Sharon & Denny

Sent: Friday, February 20, 2009 1:50 PM

Subject: RE: [ ] (unknown)

First of all I will say Eva you need to have blood work done once a month

and PCR done every three months. Talk to your doctor about that!!!!

Aloha Sharon

_____

From: [mailto: ] On Behalf Of Eva

Sent: Friday, February 20, 2009 10:36 AM

Subject: Re: [ ] (unknown)

Hi Tracey , I am one yr diagnosed. She said my AST is my liver function. My

sheet says the normal range is 5-45 U/L mine is Nov. 08 / 32 and Feb. 09 /

273. I go every three months for routine blood work and PCR My platelet

count was Nov 08 - 217 Feb 09 - 69. It says the normal range is 150 - 450

x10 9/L what ever that means???

Thanks Eva

From: Tracey

Sent: Friday, February 20, 2009 11:56 AM

groups (DOT) <mailto:%40> com

Subject: [ ] (unknown)

Hi Eva,

Have you not had any blood tests at all between November and

February? That's a long time to go between blood tests for someone

who is fairly newly diagnosed. I had CBC's done with LTF (liver

function test) every 4-6 weeks for the first couple of years.

Do you have the reference range for your LD? I've seen some

reference ranges with the upper limit being 200 and other reference

ranges being 600. Either way, your LD is a bit high. Did you have

your ALP done? If your ALP is also really high it might mean that

your liver is being strained with the Gleevec. The LD alone, doesn't

specifically indicate that the liver is the culprit though because it

could be high for a number of reasons. If it does turn out to be

your liver, don't panic, there are options for you out there.

Also, do you have your platelet count? I'm curious why your MPV went

up so much since the last test.

There are so many options out there for you if you have a problem

tolerating Gleevec so try not to worry.

Tracey

>

> Had a doc appt. yesterday and I am a little scared . My onc has

stopped my 400mg Gleevec for the time being and I go back on March 9.

> Nov

08

Feb 09

>

LKCS4.4

LKCS 2.8

> Neutro

1.7

Neutro 1.0

> MPV

6.6

MPV 69

> AST

29

AST 273

> LD

712

LD 922

>

> She felt my abdomen and told me not to freak out but that my # " s

were all over the place..

>

> Eva

>

>

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We all know how you feel Eva. I myself have been t here. My LDH was so high

once I convinced myself I was going to die. But I didn't. And it was because

the medication was giving a false reading . that is why they would have me

go back in two weeks at that time. Then my PTH was just high about two

months ago and I was convinced I had cancer in my thyroid or my throat or

somewhere else. But then they put me on Vit D (50,000 iu's once a week) and

now I am normal and just taking 2000iu once a day. I tell you CML is very

disturbing but I really think your Doctor needs to watch you closer. You are

going to be off Gleevec for a Month? I guess they want to see if this is

causing it all. I do not have an answer for you but someone else in this

group may. But don't worry. If I were you I would ask to have my blood done

again in two weeks. Your platets are very low. Were they concerned about

that? When I was on Gleevec my platlets got very low also. Geevec gave me a

lot of trouble. Rash all over my body was the worst and it lasted the whole

time I was on it. (6 months) so they took me off it and waited 2 weeks and

started me on Sprycel. The rash went away. So you see everyone reacts

differently to each medication.

I know exactly how you feel. When I get bad results I hibernate and just

sleep and read and do not want to even talk to anyone, But life is good with

CML. We are alive and just a few years ago you would die from it. If this

does not work for you then there are many many options out there. I am sure

it is the gleevec causing all of this sturmoil with y our blood tests.

Take care and ask us anything y ou want.

Aloha Sharon

_____

From: [mailto: ] On Behalf Of Eva

Sent: Friday, February 20, 2009 11:22 AM

Subject: Re: [ ] (unknown)

Hi Sharon, My onc says that once I was stable then every 3 months is all

that is needed . Yesterday when she got these new results she said for me to

come back on March 16 and to take no medications until then , I had to

insist on seeing her soon because of my results so she said she would see me

to repeat my blood work on March 9th. She said that she thought my results

were out of whack because maybe I had picked up some kind of bug but she nor

her nurse even took my temp.My PCR have been done every 3 months and they

were showing good results. I have got myself all wound up I could not even

face going to work today. I am a little excitable I think. All of this stuff

still scares me so much. Thanks Eva

From: Sharon & Denny

Sent: Friday, February 20, 2009 1:50 PM

groups (DOT) <mailto:%40> com

Subject: RE: [ ] (unknown)

First of all I will say Eva you need to have blood work done once a month

and PCR done every three months. Talk to your doctor about that!!!!

Aloha Sharon

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

Eva

Sent: Friday, February 20, 2009 10:36 AM

groups (DOT) <mailto:%40> com

Subject: Re: [ ] (unknown)

Hi Tracey , I am one yr diagnosed. She said my AST is my liver function. My

sheet says the normal range is 5-45 U/L mine is Nov. 08 / 32 and Feb. 09 /

273. I go every three months for routine blood work and PCR My platelet

count was Nov 08 - 217 Feb 09 - 69. It says the normal range is 150 - 450

x10 9/L what ever that means???

Thanks Eva

From: Tracey

Sent: Friday, February 20, 2009 11:56 AM

groups (DOT) <mailto:%40> com

Subject: [ ] (unknown)

Hi Eva,

Have you not had any blood tests at all between November and

February? That's a long time to go between blood tests for someone

who is fairly newly diagnosed. I had CBC's done with LTF (liver

function test) every 4-6 weeks for the first couple of years.

Do you have the reference range for your LD? I've seen some

reference ranges with the upper limit being 200 and other reference

ranges being 600. Either way, your LD is a bit high. Did you have

your ALP done? If your ALP is also really high it might mean that

your liver is being strained with the Gleevec. The LD alone, doesn't

specifically indicate that the liver is the culprit though because it

could be high for a number of reasons. If it does turn out to be

your liver, don't panic, there are options for you out there.

Also, do you have your platelet count? I'm curious why your MPV went

up so much since the last test.

There are so many options out there for you if you have a problem

tolerating Gleevec so try not to worry.

Tracey

>

> Had a doc appt. yesterday and I am a little scared . My onc has

stopped my 400mg Gleevec for the time being and I go back on March 9.

> Nov

08

Feb 09

>

LKCS4.4

LKCS 2.8

> Neutro

1.7

Neutro 1.0

> MPV

6.6

MPV 69

> AST

29

AST 273

> LD

712

LD 922

>

> She felt my abdomen and told me not to freak out but that my # " s

were all over the place..

>

> Eva

>

>

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gotcha!  I posted one of Moxi playing in the snow with her donut toy and one of

my family at xmas, minus me, the photographer.  Thanks, Bobby

From: Sharon & Denny <onthewtr@...>

Subject: RE: [ ] (unknown)

Date: Friday, February 20, 2009, 2:03 AM

Bobby,

To to photos and go to add photos, then go to add new.

If your cant get it send them to me and I will post them for you.

Aloha Sharon

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

ROBERTA DOYLE

Sent: Thursday, February 19, 2009 5:00 PM

Subject: [ ] (unknown)

Hi, if someone will tell me how, I would like to post a picture. Bobby

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Thank you so much Sharon. The only think different I have been doing is I

started taking 1000 mg of vitamin D last November. I am feeling a little better

.. You guys always calm me down. God Bless; Eva

From: Sharon & Denny

Sent: Friday, February 20, 2009 2:35 PM

Subject: RE: [ ] (unknown)

We all know how you feel Eva. I myself have been t here. My LDH was so high

once I convinced myself I was going to die. But I didn't. And it was because

the medication was giving a false reading . that is why they would have me

go back in two weeks at that time. Then my PTH was just high about two

months ago and I was convinced I had cancer in my thyroid or my throat or

somewhere else. But then they put me on Vit D (50,000 iu's once a week) and

now I am normal and just taking 2000iu once a day. I tell you CML is very

disturbing but I really think your Doctor needs to watch you closer. You are

going to be off Gleevec for a Month? I guess they want to see if this is

causing it all. I do not have an answer for you but someone else in this

group may. But don't worry. If I were you I would ask to have my blood done

again in two weeks. Your platets are very low. Were they concerned about

that? When I was on Gleevec my platlets got very low also. Geevec gave me a

lot of trouble. Rash all over my body was the worst and it lasted the whole

time I was on it. (6 months) so they took me off it and waited 2 weeks and

started me on Sprycel. The rash went away. So you see everyone reacts

differently to each medication.

I know exactly how you feel. When I get bad results I hibernate and just

sleep and read and do not want to even talk to anyone, But life is good with

CML. We are alive and just a few years ago you would die from it. If this

does not work for you then there are many many options out there. I am sure

it is the gleevec causing all of this sturmoil with y our blood tests.

Take care and ask us anything y ou want.

Aloha Sharon

_____

From: [mailto: ] On Behalf Of Eva

Sent: Friday, February 20, 2009 11:22 AM

Subject: Re: [ ] (unknown)

Hi Sharon, My onc says that once I was stable then every 3 months is all

that is needed . Yesterday when she got these new results she said for me to

come back on March 16 and to take no medications until then , I had to

insist on seeing her soon because of my results so she said she would see me

to repeat my blood work on March 9th. She said that she thought my results

were out of whack because maybe I had picked up some kind of bug but she nor

her nurse even took my temp.My PCR have been done every 3 months and they

were showing good results. I have got myself all wound up I could not even

face going to work today. I am a little excitable I think. All of this stuff

still scares me so much. Thanks Eva

From: Sharon & Denny

Sent: Friday, February 20, 2009 1:50 PM

groups (DOT) <mailto:%40> com

Subject: RE: [ ] (unknown)

First of all I will say Eva you need to have blood work done once a month

and PCR done every three months. Talk to your doctor about that!!!!

Aloha Sharon

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

Eva

Sent: Friday, February 20, 2009 10:36 AM

groups (DOT) <mailto:%40> com

Subject: Re: [ ] (unknown)

Hi Tracey , I am one yr diagnosed. She said my AST is my liver function. My

sheet says the normal range is 5-45 U/L mine is Nov. 08 / 32 and Feb. 09 /

273. I go every three months for routine blood work and PCR My platelet

count was Nov 08 - 217 Feb 09 - 69. It says the normal range is 150 - 450

x10 9/L what ever that means???

Thanks Eva

From: Tracey

Sent: Friday, February 20, 2009 11:56 AM

groups (DOT) <mailto:%40> com

Subject: [ ] (unknown)

Hi Eva,

Have you not had any blood tests at all between November and

February? That's a long time to go between blood tests for someone

who is fairly newly diagnosed. I had CBC's done with LTF (liver

function test) every 4-6 weeks for the first couple of years.

Do you have the reference range for your LD? I've seen some

reference ranges with the upper limit being 200 and other reference

ranges being 600. Either way, your LD is a bit high. Did you have

your ALP done? If your ALP is also really high it might mean that

your liver is being strained with the Gleevec. The LD alone, doesn't

specifically indicate that the liver is the culprit though because it

could be high for a number of reasons. If it does turn out to be

your liver, don't panic, there are options for you out there.

Also, do you have your platelet count? I'm curious why your MPV went

up so much since the last test.

There are so many options out there for you if you have a problem

tolerating Gleevec so try not to worry.

Tracey

>

> Had a doc appt. yesterday and I am a little scared . My onc has

stopped my 400mg Gleevec for the time being and I go back on March 9.

> Nov

08

Feb 09

>

LKCS4.4

LKCS 2.8

> Neutro

1.7

Neutro 1.0

> MPV

6.6

MPV 69

> AST

29

AST 273

> LD

712

LD 922

>

> She felt my abdomen and told me not to freak out but that my # " s

were all over the place..

>

> Eva

>

>

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Hi Eva,

While I don't think there's any reason to panic, I do think that your

experience shows why people shouldn't go so long between blood tests

in the first year or two of treatment.

When I was diagnosed (and when many of us were diagnosed), we had

blood tests every single week. Once we got stabilized, then we moved

to every 4-6 weeks (I'm talking about CBC's not PCR's). I kept this

routine going for several years. I think it was only in my fourth or

fifth year that I started to stretch my CBC's every 3 months.

Most of the problems that people can experience on treatment will

occur in the first two years which is why you want to have fairly

close monitoring during that period. This is certainly a point I

would raise with your doctor.

Your platelet count is quite low and I would think that they would

want to monitor that every week at this point, not wait for almost a

month before checking again.

It's true that the AST reflects liver function but the ALP is also a

good indicator of how the liver is functioning. It's when you take

all the tests together that you get a better idea of what's going on

and where the problem is.

Tracey

> >

> > Had a doc appt. yesterday and I am a little scared . My onc has

> stopped my 400mg Gleevec for the time being and I go back on March

9.

> > Nov

> 08

> Feb 09

> >

> LKCS4.4

> LKCS 2.8

> > Neutro

> 1.7

> Neutro 1.0

> > MPV

> 6.6

> MPV 69

> > AST

> 29

> AST 273

> > LD

> 712

> LD 922

> >

> > She felt my abdomen and told me not to freak out but that my # " s

> were all over the place..

> >

> > Eva

> >

> >

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I agree... I have had CML for 4 years, but I have my CBC done every month and

PCR once in 3 months. Livia

From: Sharon & Denny <onthewtr@...>

Subject: RE: [ ] (unknown)

Date: Friday, February 20, 2009, 1:50 PM

First of all I will say Eva you need to have blood work done once a month

and PCR done every three months. Talk to your doctor about that!!!!

Aloha Sharon

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Eva

Sent: Friday, February 20, 2009 10:36 AM

groups (DOT) com

Subject: Re: [ ] (unknown)

Hi Tracey , I am one yr diagnosed. She said my AST is my liver function. My

sheet says the normal range is 5-45 U/L mine is Nov. 08 / 32 and Feb. 09 /

273. I go every three months for routine blood work and PCR My platelet

count was Nov 08 - 217 Feb 09 - 69. It says the normal range is 150 - 450

x10 9/L what ever that means???

Thanks Eva

From: Tracey

Sent: Friday, February 20, 2009 11:56 AM

groups (DOT) <mailto:% 40groups. com> com

Subject: [ ] (unknown)

Hi Eva,

Have you not had any blood tests at all between November and

February? That's a long time to go between blood tests for someone

who is fairly newly diagnosed. I had CBC's done with LTF (liver

function test) every 4-6 weeks for the first couple of years.

Do you have the reference range for your LD? I've seen some

reference ranges with the upper limit being 200 and other reference

ranges being 600. Either way, your LD is a bit high. Did you have

your ALP done? If your ALP is also really high it might mean that

your liver is being strained with the Gleevec. The LD alone, doesn't

specifically indicate that the liver is the culprit though because it

could be high for a number of reasons. If it does turn out to be

your liver, don't panic, there are options for you out there.

Also, do you have your platelet count? I'm curious why your MPV went

up so much since the last test.

There are so many options out there for you if you have a problem

tolerating Gleevec so try not to worry.

Tracey

>

> Had a doc appt. yesterday and I am a little scared . My onc has

stopped my 400mg Gleevec for the time being and I go back on March 9.

> Nov

08

Feb 09

>

LKCS4.4

LKCS 2.8

> Neutro

1.7

Neutro 1.0

> MPV

6.6

MPV 69

> AST

29

AST 273

> LD

712

LD 922

>

> She felt my abdomen and told me not to freak out but that my # " s

were all over the place..

>

> Eva

>

>

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