HELP!

February 26, 2007

Fill Management NW

540 West Ave

Arlington, WA 98223

365-435-5365

fillmgtnw@...

www.northwestfills.com

McGinnis <shedoc28@...> wrote: what

Doc is this a # to?

--- Robin <roblynn54@...> wrote:

> Phone: 360 435-5365

> email: fillmgtnw@...

> web: www.northwestfills.com

>

> kozfreelance <kozfreelance@...> wrote:

>

> I am

> > > trying to find a

> > > > way to get my fills for REALLY cheap. Can

> anyone

> > > > help.

> > > >

> > > > I have tried to get ahold of NW fill in

> Arlington and can not find

> them on the web. Does any one have a phone

> number.

> > > >

> > > > ---------------------------------

> > > > Get your own web address.

> > > > Have a HUGE year through Small

> Business.

> > > >

> > > > [Non-text portions of this message have been

> > > removed]

> > > >

> > >

> >

>

__________________________________________________________

> > Any questions? Get answers on any topic at

> www.Answers.. Try

> it now.

> >

> > ---------------------------------

> > Get your own web address.

> > Have a HUGE year through Small Business.

> >

> > [Non-text portions of this message have been

> removed]

> >

>

> ---------------------------------

> Food fight? Enjoy some healthy debate

> in the Answers Food & Drink Q & A.

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________________

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March 5, 2007

Hey, thanks for letting me know about this. I went up there last

week and had my second fill. They were great!

-

>

> Fill Management NW

> 540 West Ave

> Arlington, WA 98223

> 365-435-5365

> fillmgtnw@...

> www.northwestfills.com

April 22, 2007

Deborah,

do you know why they think he will test higher now? that is VERY unusual for a student to score higher on IQ as they get older--more often than not, it goes the other way. Of course, the scores you get can depend on the particular test that is used. Are you saying that he had an IQ of 69 (not 69 percent or percentile)?

Ann

In a message dated 4/22/2007 10:28:34 P.M. Central Daylight Time, dpilafam5@... writes:

I am also a mother of a high functioning Autistic son, who will be turning 18 years old in November. We live in Mchenry. We had his last IEP. We were given two options, one have him graduate on time & receive his diploma & be done with all of the school services; or two go thru the ceremony & receive a diploma of completion & continue his services thru the school sytem. He would go to McHenry County College for classes, still receive speach & other special services such as job training, ??. He is not set to completely graduate until 2011.I am hoping to get some help with gardianship, signing up for social services, healthcare, dental... I am not sure where to start. In 2002 or 2003 he had an IQ test & he scored an over all 69%. In the IEP they said he would test higher now. I think if his IQ is higher he loses some benifit that he might receive. Any help would be greatly appreciated.God bless all of our special people!Deborah Pila

April 22, 2007

you can call me at the lifespan project at 800-588-7002

we can give you some numbers /referrals to start. cindi Swanson

April 24, 2007

I would have him receive the certificate and keep him in school. They have to keep him until the end of the school year in which he turns 21. Once they give him a diploma he is done. There are a lot of services he can get while he is still in school, that you will have to fight for once he is out. Like job coaching, tech training etc.

Been there done it,

Sherie Dvorak

April 24, 2007

also, my understanding is the age is changing to 22. I heard this from my son's teachers.

H.

Re:help!

I would have him receive the certificate and keep him in school. They have to keep him until the end of the school year in which he turns 21. Once they give him a diploma he is done. There are a lot of services he can get while he is still in school, that you will have to fight for once he is out. Like job coaching, tech training etc.

Been there done it,

Sherie Dvorak

April 24, 2007

HB 817 changes the state mandate to allow kids to stay in spec ed until the day

before their 22nd birthday. Current mandate is to stay until the end of the

school year in which they turned 21. Districts may choose to allow kids to stay

longer than the state mandate, but they may not make them leave sooner.

If this is important to you, write or call your state legislator asking them to

support the bill.

Michele Westmass

Family Support Network

--- Re:help!

>

> I would have him receive the certificate and keep him in school. They have to

keep him until the end of the school year in which he turns 21. Once they give

him a diploma he is done. There are a lot of services he can get while he is

still in school, that you will have to fight for once he is out. Like job

coaching, tech training etc.

> Been there done it,

>

> Sherie Dvorak

April 24, 2007

Dear Ann: They stated that he tested higher in some things like math & scored lower in other aspects. I do believe she said that his IQ score was 69. I will give her a call to check on it. They think he might have a higher score, because of how much he has improved, he gpa is 3.8. Annosterling@... wrote: Deborah, do you know why they think he will test higher now? that is

VERY unusual for a student to score higher on IQ as they get older--more often than not, it goes the other way. Of course, the scores you get can depend on the particular test that is used. Are you saying that he had an IQ of 69 (not 69 percent or percentile)? Ann In a message dated 4/22/2007 10:28:34 P.M. Central Daylight Time, dpilafam5 writes: I am also a mother of a high functioning Autistic son, who will be turning 18 years old in November. We live in Mchenry. We had his last IEP. We were given two options, one have him graduate on time & receive his diploma & be done with all of the school services; or two go thru the ceremony & receive a diploma of completion &

continue his services thru the school sytem. He would go to McHenry County College for classes, still receive speach & other special services such as job training, ??. He is not set to completely graduate until 2011.I am hoping to get some help with gardianship, signing up for social services, healthcare, dental... I am not sure where to start. In 2002 or 2003 he had an IQ test & he scored an over all 69%. In the IEP they said he would test higher now. I think if his IQ is higher he loses some benifit that he might receive. Any help would be greatly appreciated.God bless all of our special people!Deborah Pila

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

April 24, 2007

Interesting....getting a gpa with an iq of 69. Is he receiving accommodations or modifications? any other extra support (e.g. aide) or "special" classes? Grades can also reflect how students are graded-e.g. is it a lot of memorization which might be easiser for some students on the high end of autism spectrum vs. tests/assignments involving more inference, etc.

If you think the IQ-or even updated information on the strengths and weaknesses of your child, I'd encourage you to request the testing. But, if all you are looking for is a number, I don't know that you need to spend the time...

ann

Re: help!

Dear Ann: They stated that he tested higher in some things like math & scored lower in other aspects. I do believe she said that his IQ score was 69. I will give her a call to check on it. They think he might have a higher score, because of how much he has improved, he gpa is 3.8.

Annosterlingaol wrote:

Deborah,

do you know why they think he will test higher now? that is VERY unusual for a student to score higher on IQ as they get older--more often than not, it goes the other way. Of course, the scores you get can depend on the particular test that is used. Are you saying that he had an IQ of 69 (not 69 percent or percentile)?

Ann

In a message dated 4/22/2007 10:28:34 P.M. Central Daylight Time, dpilafam5 writes:

I am also a mother of a high functioning Autistic son, who will be

turning 18 years old in November. We live in Mchenry. We had his

last IEP. We were given two options, one have him graduate on time &

receive his diploma & be done with all of the school services; or two

go thru the ceremony & receive a diploma of completion & continue his

services thru the school sytem. He would go to McHenry County College

for classes, still receive speach & other special services such as job

training, ??. He is not set to completely graduate until 2011.

I am hoping to get some help with gardianship, signing up for social

services, healthcare, dental... I am not sure where to start. In

2002 or 2003 he had an IQ test & he scored an over all 69%. In the

IEP they said he would test higher now. I think if his IQ is higher

he loses some benifit that he might receive.

Any help would be greatly appreciated.

God bless all of our special people!

Deborah Pila

Ahhh...imagining that irresistible "new car" smell?

Check out new cars at Autos.

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July 19, 2008

>

> Hi,

> my name is & I am 43 years old.

> On Wednesday, I was diagnosed with CLL - Stage 0

> & honestly, I am a mess.

> The only way I knew I had this was that I was supposed to have

> surgery last week & when they saw my white blood count -

> they postponed the surgery - it was at 30,000.

>

> I was wondering if anyone who has had this disease

> for a long period of time has any suggestions as far as

> diet, vitamins, medication, exercise & God only knows

> what else to help me -

> I know that sometimes the symptoms don't show up for

> years so it is like a sick kind of waiting game -

> anything I can do to prolong my life at this point,

> I am willing to do so.

> I have a 5 year old son who is the light of my life & I will

> not go out without the fight of my life.

>

> Thanks & God Bless You All,

>

Hello , and welcome,

I can hear the panic of the initial diagnosis. I was diagnosed in

1999 with SLL/CLL (the cell type looks the same under the microscope,

it presents slightly differently in the clinic). I had one round of

treatment in 2003 and have been in remission for almost five years.

The first thing is to take a deep breath and recognize that you are

alive right this minute and you are not going to die, at least not

any time soon. Lymphoma is typically caught much later in its

progression and you are lucky to have caught it so quickly.

Generally speaking it is also a very slow growing cancer and there

are treatments and less-toxic medications which have been developed

over the last decade that is turning this disease from a sentence of

death to a chronic, manageable, disease. There are many many

different cell types and the treatment varies depending upon cell

type. So an accurate diagnosis is absolutely necessary. A second

opinion from an expert in the area is a common practice, including a

second opinion with respect to the pathology of the cell. It is not

possible to completely conclude a diagnosis of CLL just from a high

white blood count. A bone marrow biopsy is often used, along with

immunophenotyping to look at the cells' properties more carefully.

Information is you biggest ally right now. I would strongly suggest

you take a look at www.lymphomation.org which has a lot of

information on different types of lymphoma and their treatment and

their prognosis. Take a trusted family member or friend to your

doctors' appointments so that they can help you ask the questions you

need to ask and can take notes of what the doctor says. Often we only

hear the bad news and completely miss the qualifying statements and

other information that helps make decisions about what to do. Get an

oncologist familiar with lymphomas, and CLL if at all possible. Don't

pay any attention to predictions about how long lymphoma patients

live. Everyone is different and the old predictions don't take into

account the advances in treatment. There are people who have lived

decades of healthy, active, normal lives with this disease. Plan on

being amongst them.

As you have anticipated, it can be somewhat of a waiting game. It

even has a name: Watchful waiting, or wait and watch. Because

lymphoma treatment is generally not considered curative, it tends to

be paliative, i.e., responding to symptoms. Often symptoms don't

develope for a long time (which is why so many cases are caught at

stage 3 or 4).

While alternative therapies have not really proven to be curative in

the medical model, anything that strengthens your immune system is a

good thing to do. I stopped ingesting food and water that contained

pesticides and herbicides. I focussed on eating organic food as much

as possible and avoiding processed foods and partially hydrogenated

oils. I drink filtered water. I avoid petroleum based products. I

take supplements that include healthy doses of selenium, vitamin D,

curcumin, fish oil, and anti-oxidants, all in moderation, but all I

think are supportive. And I exercise daily. And meditate. I try to

avoid stress as much as I can. I have looked to traditional Chinese

Medicine as a complement to my western oncology. (I figure 3000

years of anecdotal evidence is worthy of consideration.)

Bottom line, is you are on a journey. There is lots of support out

there, so don't be afraid to ask for it. Having an illness like this

challenges the ability of people who see themselves as care-givers

(such as a Mom) to also be care-receivers. There are several

lymphoma lists with very smart and compassionate people willing to

answer any questions you have. Just ask. You're going to be fine.

Don't give in to fear.

That's my two cents (or maybe a nickel's) worth after almost 10 years.

Good luck!

Toby Hollander

Portland, ME

SLL/CLL, 7/99; tx w/ low dose cytoxan, prednisone & rituxan (x2)

03/03; remission

July 19, 2008

thanks SO much Toby -

your words are such a comfort to me right now -

I cannot believe how many caring & compassionate people have

emailed me since last night!!

it is so wonderful to have such a support group on here -

I live in PA - near Philly so I think I will have alot of good doctors

in this area -

I have a 2nd opinion on Aug. 1st so I am very hopeful that I can

get some good advice, etc.....

do you also drink green tea?

that seems like a common thing too for most people that I have heard from -

also, is stress a trigger for this?

I have enough of that in my life right now -

thanks again -

it means the world to me -

From: thollander33@...Date: Sat, 19 Jul 2008 14:11:17 +0000Subject: Re: help!

>> Hi, > my name is & I am 43 years old.> On Wednesday, I was diagnosed with CLL - Stage 0 > & honestly, I am a mess.> The only way I knew I had this was that I was supposed to have> surgery last week & when they saw my white blood count -> they postponed the surgery - it was at 30,000.> > I was wondering if anyone who has had this disease> for a long period of time has any suggestions as far as> diet, vitamins, medication, exercise & God only knows > what else to help me -> I know that sometimes the symptoms don't show up for> years so it is like a sick kind of waiting game -> anything I can do to prolong my life at this point, > I am willing to do so.> I have a 5 year old son who is the light of my life & I will> not go out without the fight of my life.> > Thanks & God Bless You All,> >Hello , and welcome,I can hear the panic of the initial diagnosis. I was diagnosed in 1999 with SLL/CLL (the cell type looks the same under the microscope, it presents slightly differently in the clinic). I had one round of treatment in 2003 and have been in remission for almost five years. The first thing is to take a deep breath and recognize that you are alive right this minute and you are not going to die, at least not any time soon. Lymphoma is typically caught much later in its progression and you are lucky to have caught it so quickly. Generally speaking it is also a very slow growing cancer and there are treatments and less-toxic medications which have been developed over the last decade that is turning this disease from a sentence of death to a chronic, manageable, disease. There are many many different cell types and the treatment varies depending upon cell type. So an accurate diagnosis is absolutely necessary. A second opinion from an expert in the area is a common practice, including a second opinion with respect to the pathology of the cell. It is not possible to completely conclude a diagnosis of CLL just from a high white blood count. A bone marrow biopsy is often used, along with immunophenotyping to look at the cells' properties more carefully.Information is you biggest ally right now. I would strongly suggest you take a look at www.lymphomation.org which has a lot of information on different types of lymphoma and their treatment and their prognosis. Take a trusted family member or friend to your doctors' appointments so that they can help you ask the questions you need to ask and can take notes of what the doctor says. Often we only hear the bad news and completely miss the qualifying statements and other information that helps make decisions about what to do. Get an oncologist familiar with lymphomas, and CLL if at all possible. Don't pay any attention to predictions about how long lymphoma patients live. Everyone is different and the old predictions don't take into account the advances in treatment. There are people who have lived decades of healthy, active, normal lives with this disease. Plan on being amongst them.As you have anticipated, it can be somewhat of a waiting game. It even has a name: Watchful waiting, or wait and watch. Because lymphoma treatment is generally not considered curative, it tends to be paliative, i.e., responding to symptoms. Often symptoms don't develope for a long time (which is why so many cases are caught at stage 3 or 4).While alternative therapies have not really proven to be curative in the medical model, anything that strengthens your immune system is a good thing to do. I stopped ingesting food and water that contained pesticides and herbicides. I focussed on eating organic food as much as possible and avoiding processed foods and partially hydrogenated oils. I drink filtered water. I avoid petroleum based products. I take supplements that include healthy doses of selenium, vitamin D, curcumin, fish oil, and anti-oxidants, all in moderation, but all I think are supportive. And I exercise daily. And meditate. I try to avoid stress as much as I can. I have looked to traditional Chinese Medicine as a complement to my western oncology. (I figure 3000 years of anecdotal evidence is worthy of consideration.)Bottom line, is you are on a journey. There is lots of support out there, so don't be afraid to ask for it. Having an illness like this challenges the ability of people who see themselves as care-givers (such as a Mom) to also be care-receivers. There are several lymphoma lists with very smart and compassionate people willing to answer any questions you have. Just ask. You're going to be fine. Don't give in to fear.That's my two cents (or maybe a nickel's) worth after almost 10 years.Good luck!Toby HollanderPortland, MESLL/CLL, 7/99; tx w/ low dose cytoxan, prednisone & rituxan (x2) 03/03; remission Keep your kids safer online with Windows Live Family Safety. Help protect your kids.

July 19, 2008

>,

Your message brought a flashback of feelings of how my husband and I

felt 16 months ago when he was diagnosed at 45. He was initially

told he was stage 4, now we don't even think about stages. He is

still on watch and wait and we go in every 4 months. We run everyday

(read exercise uses up sugar that can feed cancer), he drinks a lot

of green tea, takes Vitron C (he is low on iron) and takes Xango

(might be a hoax but at least we feel like he is doing something).

We know his disease is progressing. He has some bad indicators. You

can have your prognostic factors tested and that is somewhat of a

crystal ball and what you might expect. I wish I could take away the

panic you are feeling, but hopefully time and information will help.

I strongly recommend visiting the clltopics website to help you get

background information.

Regards,

> Hi,

> my name is & I am 43 years old.

> On Wednesday, I was diagnosed with CLL - Stage 0

> & honestly, I am a mess.

> The only way I knew I had this was that I was supposed to have

> surgery last week & when they saw my white blood count -

> they postponed the surgery - it was at 30,000.

>

> I was wondering if anyone who has had this disease

> for a long period of time has any suggestions as far as

> diet, vitamins, medication, exercise & God only knows

> what else to help me -

> I know that sometimes the symptoms don't show up for

> years so it is like a sick kind of waiting game -

> anything I can do to prolong my life at this point,

> I am willing to do so.

> I have a 5 year old son who is the light of my life & I will

> not go out without the fight of my life.

>

> Thanks & God Bless You All,

>

July 19, 2008

Take a deep breathe. CLL is no fun, but at least you have plenty of

time to plan your approach, know what to expect, and get armed for

battle if needed. You may never need treatment.

CLL is so variable and there is so much to learn.

The group here is a good start. Lots of support and help here. Some of

the teleconferences referenced here are very valuable. Also check out

CLLtopics.org. Great source of clear easily digested info. But move

slowly. It can be overwhelming at first.

The first and most important thing is to find the right doctor and

team for your CLL care. Most oncologists don't treat much CLL and may

not be up to date on the latest approaches. To find an expert, ask the

group or check out the CLL consortium: http://cll.ucsd.edu/index.htm

for a start. I see Dr Kipps UCSD and Dr Forman City of Hope.

Consider having what are called prognostic tests done. This is

changing, but I recommend a minimum of a FISH study and if possible

mutation status. The meaning of all this will become clear as you

become an expert warrior and begin to know your enemy and what it

might do. These two tests suggest, but do not absolutely predict how

aggressive and responsive to different treatments your form of CLL

might be so you can plan appropriately.

Please let me know if I can help in any way

Please pardon my jargon below. You'll get used to it

Be well

, 57 yr family doc & father of 4, dx 9/05 del 11q w ATM,

unmutated, CD38+, W & W, stable except for growing nodes and spleen

until ITP 9/06 eventually failed steroids, IVIG , Rituxan and

splenectomy then onto cyclosporin A and finished Rituxan with ITP

controlled and CLL in old school CR, had a RIC MUD HSCT July 1 at City

of Hope and am doing great, going home on Monday! see

http://bkoffman.blogspot.com/

July 21, 2008

, I was diagnosed over 4 yrs ago and under treatment with Rituxan and doing well.

Don't let it get you down, alot of us live with it and have no major problems. I turned my

problem over to the Lord and with alot of prayer things can go very well. You will do fine

take it a day at a time and enjoy your son. God Bless

From: Bonnie Le Var <bonnielevar@...>Subject: RE: help! Date: Monday, July 21, 2008, 2:24 PM

,

I know just how you feel – about everything. It will take you a while to actually forget that you have CLL. But that is what happened to me and I work everyday with cancer patients. At first your Dr. will want to do frequent blood tests (about which you will probably get very nervous) and then, when your Dr. decides that you are “stable” you will only need to go for tests every 6 to 9 months. At least that is what I have experienced and I was DX 2 ½ years ago.

My Dr. told me that I am stable and doing fine and advised me to keep up what ever it is that I am doing…….So this is strictly my experience, but I have greatly increased the amount of blueberries I eat (which is not difficult because I like them!) and also I have increased the amount of mushrooms (fresh always – all types but shitake are supposed to be really good for you). I do not take any of the immune boosters because I am concerned that they might make it easier for the CLL…….?? Who knows? I have tried to increase my intake of folic acid through nutrition but I also take 400/folic every day as a supplement along with my daily vitamin and calcium (I am 60.). When I can afford it, I buy organic fruits and vegetables – but not always.

This chat group is the best support that you could ask for – informative, friendly and, I think, testament to the great treatment that is available.

Also, Dr. Furman has been unbelievable in donating his time to answer individual questions. And thanks to , for monitoring and keeping it going so well.

Good luck – and think positive.

Bonnie

From: groups (DOT) com [mailto: groups (DOT) com ] On Behalf Of mccartersusanSent: Friday, July 18, 2008 7:31 PMgroups (DOT) comSubject: help!

Hi, my name is & I am 43 years old.On Wednesday, I was diagnosed with CLL - Stage 0 & honestly, I am a mess.The only way I knew I had this was that I was supposed to havesurgery last week & when they saw my white blood count -they postponed the surgery - it was at 30,000.I was wondering if anyone who has had this diseasefor a long period of time has any suggestions as far asdiet, vitamins, medication, exercise & God only knows what else to help me -I know that sometimes the symptoms don't show up foryears so it is like a sick kind of waiting game -anything I can do to prolong my life at this point, I am willing to do so.I have a 5 year old son who is the light of my life & I willnot go out without the fight of my life.Thanks & God Bless You

All,

July 21, 2008

,

I know just how you feel –

about everything. It will take you a while to actually forget that you have

CLL. But that is what happened to me and I work everyday with cancer patients.

At first your Dr. will want to do frequent blood tests (about which you will

probably get very nervous) and then, when your Dr. decides that you are “stable”

you will only need to go for tests every 6 to 9 months. At least that is what I

have experienced and I was DX 2 ½ years ago.

My Dr. told me that I am

stable and doing fine and advised me to keep up what ever it is that I am doing…….So

this is strictly my experience, but I have greatly increased the amount of

blueberries I eat (which is not difficult because I like them!) and also I have

increased the amount of mushrooms (fresh always – all types but shitake

are supposed to be really good for you). I do not take any of the immune

boosters because I am concerned that they might make it easier for the CLL…….??

Who knows? I have tried to increase my intake of folic acid through nutrition

but I also take 400/folic every day as a supplement along with my daily vitamin

and calcium (I am 60.). When I can afford it, I buy organic fruits and

vegetables – but not always.

This chat group is the best

support that you could ask for – informative, friendly and, I think, testament

to the great treatment that is available.

Also, Dr. Furman has been

unbelievable in donating his time to answer individual questions. And thanks to

, for monitoring and keeping it going so well.

Good luck – and think

positive.

Bonnie

From: [mailto: ] On Behalf Of mccartersusan

Sent: Friday, July 18, 2008 7:31

PM

Subject: help!

Hi,

my name is & I am 43 years old.

On Wednesday, I was diagnosed with CLL - Stage 0

& honestly, I am a mess.

The only way I knew I had this was that I was supposed to have

surgery last week & when they saw my white blood count -

they postponed the surgery - it was at 30,000.

I was wondering if anyone who has had this disease

for a long period of time has any suggestions as far as

diet, vitamins, medication, exercise & God only knows

what else to help me -

I know that sometimes the symptoms don't show up for

years so it is like a sick kind of waiting game -

anything I can do to prolong my life at this point,

I am willing to do so.

I have a 5 year old son who is the light of my life & I will

not go out without the fight of my life.

Thanks & God Bless You All,

July 21, 2008

Hi ,

Just checked in on the e-mails after over a week. So sorry you are joining our fraternity--:-)---but, as you can see, there are many wonderful, caring and knowledgeable people that are a part of this group.

I like many others here drink green tea, use purified water, exercise and pray(and have many wonderful people praying for me.) I also take Green Barley pills and stay away from red meat almost all of the time. I try and do organic everything when possible and am an avid juicer. Used to juice 3 times a day but now it is usually just 2 times a day. I do take some supplements which probably would equal a good vitamin pill except for one supplement that is composed of chinese herbs. Sugar is a no no most of the time but I do treat myself now and then. Used to be a sugarholic!!! If you have any questions on where I got the information that caused me to make these decisions, just contact me. Don't want to overwhelm you.

I do want to encourage you though. You are in that transition between life before diagnosis and life after diagnosis and that is challenging but you really will get through it--really!!! You are so smart to already be looking for help and information. As you can see--we all understand and each of us is at a different place and has different experiences.

I was diagnosed 8/2002 with sll/cll. We lived in Cincinnati at the time and the original lab was Non Hodgkins lymphoma but my doctor said to read up on cll. My doctor here in Denver says--cll/sll. They are so close(as one of the people here explained so well) and different doctors address the naming of it in different ways. So far--no treatment--yippee! The diagnosis came with a lymph node biopsy and then I had a bone marrow biopsy. My lymphocytes are too high and my neutrophils are too low but my wbc is normal. Next week I see the oncologist for 6 month check-up. My total protein has been a little low(globulin) but I have not been sick at all the last couple of years so---they will not do anything unless I start having a lot of infections.

My doctor has been very positive and says I could live to be 120 with these test results. Well--I am almost 65 and am not sure that is on my agenda but---I know he was trying to let me know how well I am doing.

I was at a seminar here in Denver concerning this disease and there was a lady there who has dealt with cll since 1965. Imagine!!! So you see---we can all live a long time.

You will cry at times---at most unusual times but you will also embrace that little boy of yours and all of those you love with even more fervor and each day will bring with it a deep appreciation for life that will go beyond what you probably have felt before.

I am tent camping, hiking up in these tall Colorado mountains,taking up biking etc. This disease will NOT stop me from living nor will it stop you from living. And you will help others because you will be even more sensitive than you are now.

I read these mails often and am gathering information for the future as well as marvelling at these wonderful people and praying for them.

Excuse my rambling. We are getting ready for yet another camping trip and I am tired. Just wanted to get this off to you as soon as possible.

God bless you and keep you and make His face to shine upon you and give you peace.

From: mccartersusan <suzyqmac@...>Subject: help! Date: Friday, July 18, 2008, 10:30 PM

Hi, my name is & I am 43 years old.On Wednesday, I was diagnosed with CLL - Stage 0 & honestly, I am a mess.The only way I knew I had this was that I was supposed to havesurgery last week & when they saw my white blood count -they postponed the surgery - it was at 30,000.I was wondering if anyone who has had this diseasefor a long period of time has any suggestions as far asdiet, vitamins, medication, exercise & God only knows what else to help me -I know that sometimes the symptoms don't show up foryears so it is like a sick kind of waiting game -anything I can do to prolong my life at this point, I am willing to do so.I have a 5 year old son who is the light of my life & I willnot go out without the fight of my life.Thanks & God Bless You All,

July 22, 2008

Hi -

Your story is similar to mine - except 6 years ago. I was in my

early 40s, had a 5 year old son, but the only difference was that I

was already Stage 4 and really was very sick. I too thought

immediately of my little guy, who had no idea what was going on.

Freak out!

Thankfully, the treatment immediately made me feel better, and I

haven't looked back since. I used to be as rigorous as - ate

macrobiotic, juiced, no red meat, no sugar. Now I'm mostly

vegetarian and have some red meat and more sugar than I should.

has re-inspired me! I also did acupuncture to help balance out

my immune system, and I ahve to say that was amazingly and deeply

helpful for my nerves and my general health.

Watch and Wait, although better in some ways than being stage 4 in

that you may not be debilitated by low counts, must have it's own

pressures and that anxiety of not knowing when or if things will

deteriorate. Having this disease, which my doctor explained as a

chronic condition (this made me feel somewhat better - and i

actually say that to people when it's unavoidable that I talk about

it - I say I ahve a chronic blood condition) is really a wake-up

call! And you sound like you're still wondering how you woke up to

such a nightmare. really said it right when she told you that

this is a very helpful site, many people who are SO knowledgeable

and compassionate. Please take advantage of it.

It might be helpful for you to speak with the social worker from

your doctor's hospital -- as the receptionist or the hospital

administration -- with regard to the effects of illness on young

children. It REALLY helped me to get that perspective, and I'm not

one to usually do that.

By the way, six years later, my son does not remember me being ill.

Thank heaven he was in kindergarten already and distracted from

mommydom.

All the best to you!

Marietta

>

> From: mccartersusan <suzyqmac@...>

> Subject: help!

>

> Date: Friday, July 18, 2008, 10:30 PM

>

> Hi,

> my name is & I am 43 years old.

> On Wednesday, I was diagnosed with CLL - Stage 0

> & honestly, I am a mess.

> The only way I knew I had this was that I was supposed to have

> surgery last week & when they saw my white blood count -

> they postponed the surgery - it was at 30,000.

>

> I was wondering if anyone who has had this disease

> for a long period of time has any suggestions as far as

> diet, vitamins, medication, exercise & God only knows

> what else to help me -

> I know that sometimes the symptoms don't show up for

> years so it is like a sick kind of waiting game -

> anything I can do to prolong my life at this point,

> I am willing to do so.

> I have a 5 year old son who is the light of my life & I will

> not go out without the fight of my life.

>

> Thanks & God Bless You All,

>

December 6, 2008

Hi ,

Welcome to the forum.

There is a chasm between what the doctors (GP) tell you is good for

you, and the reality.

An Ob/Gyn consultant may better help with thyroid/adrenal treatment

to secure a full-term pregnancy.

The first trimester needs a boost in thyroid hormones even if

everything else is normal during the pregnancy.

It may also be that morning sickness is due to low adrenal function

at that time when both thyroid and adrenal function are out

of 'synch'.

There are lots of resources both on the website and within the

discussion forum.

best wishes

Bob

>

> Hi,

> I am 32 and had my thyroid gland removed 14 years ago after being

> diagnosed with Graves Disease. Since then I have battled on, taking

> levothyroxine daily. I have been on anything from 100 to 150 mcgs

> daily. With the flush of youth I felt (or thought I felt well)

however

> the last 5 years, since the birth of my little boy tell a different

> story. Low TSH levels prompted doctors to decrease my thyroxine

> despite complaints from me of the following symptoms: tiredness,

> depression, and all the other delightful symptoms such as painful

> periods, pms, hair falling out in clumps, cold hands and feet,

> intolerence to caffeine, palpitations, just generally feeling

rubbish.

> I declined the offer of antidepressents and insited being referred

> back to the specialist. This has now also left me in the cold; I

have

> had two recurrant miscarriages this year and only after asking the

> questions have I been told it could be due to my thyroxine dose

being

> so low (100mcg - I thought this was good?). At six weeks into my

> pregnancy my TSH was 7 and my daily dose increased, although I have

> also just been told now that I had thyroid antibodies in my blood.

>

> I feel exhaused with everything and everyone - why am I learning

these

> important things as I go along and only if I ask the right

questions?

> Why are these things not communicated to me? Do I need to feel so

> rubbish for the rest of my life and most importantly will I be able

to

> have another healthy child?

>

> Finding this website has given me some hope.

>

> Thanks to anyone who has listened

> x

>

December 6, 2008

Hi Bob,

Thanks for the reply, I shall definitely be hanging around this forum

and looking through the site in some more detail. I feel like

somethings need to change in 2009... thanks again

emily

> >

> > Hi,

> > I am 32 and had my thyroid gland removed 14 years ago after being

> > diagnosed with Graves Disease. Since then I have battled on, taking

> > levothyroxine daily. I have been on anything from 100 to 150 mcgs

> > daily. With the flush of youth I felt (or thought I felt well)

> however

> > the last 5 years, since the birth of my little boy tell a different

> > story. Low TSH levels prompted doctors to decrease my thyroxine

> > despite complaints from me of the following symptoms: tiredness,

> > depression, and all the other delightful symptoms such as painful

> > periods, pms, hair falling out in clumps, cold hands and feet,

> > intolerence to caffeine, palpitations, just generally feeling

> rubbish.

> > I declined the offer of antidepressents and insited being referred

> > back to the specialist. This has now also left me in the cold; I

> have

> > had two recurrant miscarriages this year and only after asking the

> > questions have I been told it could be due to my thyroxine dose

> being

> > so low (100mcg - I thought this was good?). At six weeks into my

> > pregnancy my TSH was 7 and my daily dose increased, although I have

> > also just been told now that I had thyroid antibodies in my blood.

> >

> > I feel exhaused with everything and everyone - why am I learning

> these

> > important things as I go along and only if I ask the right

> questions?

> > Why are these things not communicated to me? Do I need to feel so

> > rubbish for the rest of my life and most importantly will I be able

> to

> > have another healthy child?

> >

> > Finding this website has given me some hope.

> >

> > Thanks to anyone who has listened

> > x

> >

>

December 6, 2008

Hi

- welcome to our forum and I hope you get all the support you so

obviously need. You are not alone, we have around 830 members who all came here

because they were not getting satisfaction from their doctor. You might be

interested to know that in a

survey of 1500 hypothyroid patients undertaken by TPA-UK in 2005-2006, the

dissatisfaction of many patients is painfully highlighted. Of 1500 respondents

to our survey, 93.8% (n=1407) had not been told of medicines other than

L-thyroxine by their medical practitioner. 38.8% (n=768) felt they had

“not been dealt with very well” or “not very well at

all” by their doctor whilst seeking a diagnosis of their symptoms; 233

(15.5%) had given up paid employment; 300 (20%) had taken time off work as a

result of thyroid illness; 500 (33.3%) felt their close relationships had been

affected by thyroid illness and 632 (42.1%) had stopped or altered their

exercise routines as a result of their symptoms. When asked of those patients undergoing L-thyroxine therapy, “Do

you feel that you have fully regained your optimal state of health?”,

1176 (78.4%) answered “No”

However,

be assured that there is light at the other end of the tunnel, but sadly, you

are unlikely to find this within the NHS as medical practitioners know little

of thyroid disease, and most endocrinologists have diabetes as their specialty.

You must, however, try to get your GP to refer you to a THYROID specialist and

to do this, write a letter setting out all of your symptoms and signs (go to

our website www.tpa-uk.org.uk and click

on 'Hypothyroidism' and then on 'Symptoms and Signs') and check yours against

those. Take your basal temperature before you get out of bed and if your

temperature is lower than 97.8 for 4 or 5 days, add these to your list of

symptoms as a low temperature shows that your level of thyroid hormone

replacement is insufficient to bring your metabolism back up to working

normally. Ask in the letter for your GP to test your ferritin level (stored

iron), B12, Vitamin D as if these are low, your thyroid hormone replacement

will not be absorbed properly. Also, ask for a FULL thyroid function test which

consists of TSH, Free T4 AND Free T3. You need the Free T3 testing to see whether

you are converting the mainly inactive hormone T4 to the active hormone T3. T3

is the dominant hormone and without this, your body will not function. Let your

doctor know you are no longer prepared to suffer through a possible lack of the

right thyroid hormone replacement that should take away your symptoms.

Send a

copy of the letter to your practice manager and ask specifically that your

letter be placed into your medical notes.

Other

possibilities that will stop your thyroid hormone from working could be that

you have systemic candida or you have low adrenal reserve. Again, go to our

website, and under 'Hypothyroidism' click on 'Associated Conditions' and read

everything about these there. You can also do the Adrenal and Candida

Questionnaire that you will find in the FILES section on this forum website.

See how you score, and if high, we will be able to give you information about

where to go from there.

Be

assured that through reading all of the information, asking questions, doing a

little research, it is quite possible to regain your normal health, but you may

have to go outside of the NHS to do this. However, you might be lucky and have

a good endocrinologist in your area who can help you. Let me know where about

in the UK you live and I will see if we have a good one on our list that is

near to you.

Meanwhile,

please post your last thyroid function tests on the forum, together with the

reference range for each of the tests so we can get an idea what might be

happening to you (or not).

Luv -

Sheila

I am 32 and had my thyroid gland removed 14 years ago after being

diagnosed with Graves Disease. Since then I have battled on, taking

levothyroxine daily. I have been on anything from 100 to 150 mcgs

daily. With the flush of youth I felt (or thought I felt well) however

the last 5 years, since the birth of my little boy tell a different

story. Low TSH levels prompted doctors to decrease my thyroxine

despite complaints from me of the following symptoms: tiredness,

depression, and all the other delightful symptoms such as painful

periods, pms, hair falling out in clumps, cold hands and feet,

intolerence to caffeine, palpitations, just generally feeling rubbish.

I declined the offer of antidepressents and insited being referred

back to the specialist. This has now also left me in the cold; I have

had two recurrant miscarriages this year and only after asking the

questions have I been told it could be due to my thyroxine dose being

so low (100mcg - I thought this was good?). At six weeks into my

pregnancy my TSH was 7 and my daily dose increased, although I have

also just been told now that I had thyroid antibodies in my blood.

I feel exhaused with everything and everyone - why am I learning these

important things as I go along and only if I ask the right questions?

Why are these things not communicated to me? Do I need to feel so

rubbish for the rest of my life and most importantly will I be able to

have another healthy child?

Finding this website has given me some hope.

Thanks to anyone who has listened

x

December 6, 2008

Hi , you are not alone, many of us have had the same experience as you.you are among Friends here , so I hope you will learn all you can from our files and feel free to add what you can to our forum . the miscarriages are when your auto-antibodies are activethis sends it hyper. if you go ogle Hashimoto`s or auto-immune you will find a lot of good information. to have a successful pregnancy you need to lower the auto-antibodies.this is achieved by suppressing the hormone TSH to below the reference range.I was like you many moons ago lol. I had 3 miscarriages and eventually 2 boys now grow en up but both are autistic. wish we had the Internet back then, lol angel.

December 6, 2008

Hi sheila, Thanks for both replies - I'm so happy to have found this site and feel empowered to start to take a little more control over things as like you say - I am not alone. I have up until recently trusted the 'professionals' but have reached a point now of no return!! I live in Mid Wales - Hay on Wye to be precise so if you do know of any endocrinologists you could recommend that would be great. As mentioned in my last e-mail I attend Prof Lazarus' clinic in The Heath but am going to try a different route. I have noticed that Dr Peatfield runs a clinic in Malvern which is close...Thanks for the advice on temp etc - I am thinking of keeping a little record book of everything...I will get some up to date bloods done and post them with some of my old results..Thanks

againemilyFrom: Sheila <sheilaturner@...>thyroid treatment Sent: Saturday, December 6, 2008 10:33:50 AMSubject: RE: Help!

Hi

- welcome to our forum and I hope you get all the support you so

obviously need. You are not alone, we have around 830 members who all came here

because they were not getting satisfaction from their doctor. You might be

interested to know that in a

survey of 1500 hypothyroid patients undertaken by TPA-UK in 2005-2006, the

dissatisfaction of many patients is painfully highlighted. Of 1500 respondents

to our survey, 93.8% (n=1407) had not been told of medicines other than

L-thyroxine by their medical practitioner. 38.8% (n=768) felt they had

“not been dealt with very well” or “not very well at

all” by their doctor whilst seeking a diagnosis of their symptoms; 233

(15.5%) had given up paid employment; 300 (20%) had taken time off work as a

result of thyroid illness; 500 (33.3%) felt their close relationships had been

affected by thyroid illness and 632 (42.1%) had stopped or altered their

exercise routines as a result of their symptoms. When asked of those patients undergoing L-thyroxine therapy, “Do

you feel that you have fully regained your optimal state of health?”,

1176 (78.4%) answered “No”

However,

be assured that there is light at the other end of the tunnel, but sadly, you

are unlikely to find this within the NHS as medical practitioners know little

of thyroid disease, and most endocrinologists have diabetes as their specialty.

You must, however, try to get your GP to refer you to a THYROID specialist and

to do this, write a letter setting out all of your symptoms and signs (go to

our website www.tpa-uk.org. uk and click