Re: Looking for some insight

[Guest guest]

Thanks to everyone for your thoughtful advice and stories. I have been seeing a

family doctor that is a little on the conservative side. I have been referred

all over the place! Physical therapy - they told me that pt would not help since

I have shortness of breath and fatigue along with the crushing bone pain.

I'm in Colorado, by the way. I have contacted another doctor and will be seeing

him in the next couple of weeks. I knew that something was seriously wrong when

my bone pain didn't ease up with vicodin or percoset. I can usually take 1/4 to

1/2 a pill but with this pain I take 6 plus vicodin a day easily and morphine;

neither helps.

I have never been through this before and it is a shocking experience. Last year

I literally couldn't walk 10 feet without being totally exhausted.

Anyway, I will definitely keep everyone posted on what's going on and once again

thank you so much for the responses and wonderful emails.

Dianne

[Guest guest]

So Glad you  posted back to us Dianne.  I know everyone will agree with me that

to wait another couple of weeks is not a good choice.  If you feel any worse,

please try to see a specialist in CML, or just get to see a Oncologist to

start.  You did not say what type of doctor you will be seeing.  Not to scare

you, but you do not want whatever it is to get any worse.

                                                                                

God Bless You

                                                                                \

       Suzzie

From: islandanytime <islandanytime@...>

Subject: [ ] Re: Looking for some insight

Date: Wednesday, August 5, 2009, 10:30 PM

 

Thanks to everyone for your thoughtful advice and stories. I have been seeing a

family doctor that is a little on the conservative side. I have been referred

all over the place! Physical therapy - they told me that pt would not help since

I have shortness of breath and fatigue along with the crushing bone pain.

I'm in Colorado, by the way. I have contacted another doctor and will be seeing

him in the next couple of weeks. I knew that something was seriously wrong when

my bone pain didn't ease up with vicodin or percoset. I can usually take 1/4 to

1/2 a pill but with this pain I take 6 plus vicodin a day easily and morphine;

neither helps.

I have never been through this before and it is a shocking experience. Last year

I literally couldn't walk 10 feet without being totally exhausted.

Anyway, I will definitely keep everyone posted on what's going on and once again

thank you so much for the responses and wonderful emails.

Dianne

[Guest guest]

HI

DIANNE: I DO NOT THINK MY OTHER MESSAGE WENT THROUGH. I DO NOT WANT TO SCARE

YOU, BUT I AM CONCERNED. I AM SURE AS OTHERS READ THIS POST THEY WILL FEEL THE

SAME. I WOULD NOT WAIT A FEW WEEKS FROM THE ADDITIONAL INFORMATION YOU JUST

GAVE. TO BE ON THAT MUCH PAIN MEDICATION, AND NO RELIEF. SOMETHING IS SO

WRONG. PLEASE TRY TO GO SEE A ONCOLOGIST THAT SPECIALIZES IN LEUKEMIA, EVEN IF

ITS NOT CML, FURTHER TESTING IS NEEDED FOR SURE. PLEASE KEEP IN TOUCH.

GOD BLESS YOU AND TAKE CARE.

>

> Thanks to everyone for your thoughtful advice and stories. I have been seeing

a family doctor that is a little on the conservative side. I have been referred

all over the place! Physical therapy - they told me that pt would not help since

I have shortness of breath and fatigue along with the crushing bone pain.

>

> I'm in Colorado, by the way. I have contacted another doctor and will be

seeing him in the next couple of weeks. I knew that something was seriously

wrong when my bone pain didn't ease up with vicodin or percoset. I can usually

take 1/4 to 1/2 a pill but with this pain I take 6 plus vicodin a day easily and

morphine; neither helps.

>

> I have never been through this before and it is a shocking experience. Last

year I literally couldn't walk 10 feet without being totally exhausted.

>

> Anyway, I will definitely keep everyone posted on what's going on and once

again thank you so much for the responses and wonderful emails.

>

> Dianne

>

[Guest guest]

If you have been doing this a year hun really you need to be in the emergency

room somewhere and not waiting to go in a couple of weeks. If it is not CML you

really need to be seeing an Oncologist immediately.

I almost died because of Dr's not being too concerned. I went to 6 different

Dr's and three different emergency rooms looking for some one that would do more

than sit in a chair and act like they knew it all.

You may not have a couple of more weeks to wait. You are truly scaring me. I

would be pounding on doors come first thing in the morning if not tonight.

Keep us posted

Anita

________________________________

From: islandanytime <islandanytime@...>

Sent: Wednesday, August 5, 2009 9:30:51 PM

Subject: [ ] Re: Looking for some insight

Thanks to everyone for your thoughtful advice and stories. I have been seeing a

family doctor that is a little on the conservative side. I have been referred

all over the place! Physical therapy - they told me that pt would not help since

I have shortness of breath and fatigue along with the crushing bone pain.

I'm in Colorado, by the way. I have contacted another doctor and will be seeing

him in the next couple of weeks. I knew that something was seriously wrong when

my bone pain didn't ease up with vicodin or percoset. I can usually take 1/4 to

1/2 a pill but with this pain I take 6 plus vicodin a day easily and morphine;

neither helps.

I have never been through this before and it is a shocking experience. Last year

I literally couldn't walk 10 feet without being totally exhausted.

Anyway, I will definitely keep everyone posted on what's going on and once again

thank you so much for the responses and wonderful emails.

Dianne

[Guest guest]

Dianne, you have a lot to look forward to. I expect the right medical help is

going to change your current state of affairs for the better.

All the best to you

From: islandanytime@...

Date: Thu, 6 Aug 2009 02:30:51 +0000

Subject: [ ] Re: Looking for some insight

Thanks to everyone for your thoughtful advice and stories. I

have been seeing a family doctor that is a little on the conservative side. I

have been referred all over the place! Physical therapy - they told me that pt

would not help since I have shortness of breath and fatigue along with the

crushing bone pain.

I'm in Colorado, by the way. I have contacted another doctor and will be seeing

him in the next couple of weeks. I knew that something was seriously wrong when

my bone pain didn't ease up with vicodin or percoset. I can usually take 1/4 to

1/2 a pill but with this pain I take 6 plus vicodin a day easily and morphine;

neither helps.

I have never been through this before and it is a shocking experience. Last year

I literally couldn't walk 10 feet without being totally exhausted.

Anyway, I will definitely keep everyone posted on what's going on and once again

thank you so much for the responses and wonderful emails.

Dianne

_________________________________________________________________

Windows Live™: Keep your life in sync.

http://windowslive.com/explore?ocid=PID23384::T:WLMTAGL:ON:WL:en-US:NF_BR_sync:0\

82009

[Guest guest]

Check this out, Dianne! It's a list of accredited specialized cancer treatment

programs all over the state of Colorado from the Leukemia and Lymphoma Society.

http://www.accc-cancer.org/membership_directory/state-members.asp?state=co

From: islandanytime@...

Date: Thu, 6 Aug 2009 02:30:51 +0000

Subject: [ ] Re: Looking for some insight

Thanks to everyone for your thoughtful advice and stories. I

have been seeing a family doctor that is a little on the conservative side. I

have been referred all over the place! Physical therapy - they told me that pt

would not help since I have shortness of breath and fatigue along with the

crushing bone pain.

I'm in Colorado, by the way. I have contacted another doctor and will be seeing

him in the next couple of weeks. I knew that something was seriously wrong when

my bone pain didn't ease up with vicodin or percoset. I can usually take 1/4 to

1/2 a pill but with this pain I take 6 plus vicodin a day easily and morphine;

neither helps.

I have never been through this before and it is a shocking experience. Last year

I literally couldn't walk 10 feet without being totally exhausted.

Anyway, I will definitely keep everyone posted on what's going on and once again

thank you so much for the responses and wonderful emails.

Dianne

_________________________________________________________________

Get your vacation photos on your phone!

http://windowsliveformobile.com/en-us/photos/default.aspx? & OCID=0809TL-HM

[Guest guest]

Hi Dianne,

I sent you an email.

Don

>

> Thanks to everyone for your thoughtful advice and stories. I have been seeing

a family doctor that is a little on the conservative side. I have been referred

all over the place! Physical therapy - they told me that pt would not help since

I have shortness of breath and fatigue along with the crushing bone pain.

>

> I'm in Colorado, by the way. I have contacted another doctor and will be

seeing him in the next couple of weeks. I knew that something was seriously

wrong when my bone pain didn't ease up with vicodin or percoset. I can usually

take 1/4 to 1/2 a pill but with this pain I take 6 plus vicodin a day easily and

morphine; neither helps.

>

> I have never been through this before and it is a shocking experience. Last

year I literally couldn't walk 10 feet without being totally exhausted.

>

> Anyway, I will definitely keep everyone posted on what's going on and once

again thank you so much for the responses and wonderful emails.

>

> Dianne

>

[Guest guest]

Diane,

Don't wait a " couple of weeks " !!!

This is too serious to wait for. You need to see an oncologist today! Call

around, I know that they will tell you you need a referral, tell them what your

WBC is and explain that your old doctor did not feel that was serious enough.

Beg them, yell if you need too... insist on being seen!

I (we all do) know those symptoms. Even if it is not CML it is something

CRITICAL. Please do not wait.

Troxel

>

> Thanks to everyone for your thoughtful advice and stories. I have been seeing

a family doctor that is a little on the conservative side. I have been referred

all over the place! Physical therapy - they told me that pt would not help since

I have shortness of breath and fatigue along with the crushing bone pain.

>

> I'm in Colorado, by the way. I have contacted another doctor and will be

seeing him in the next couple of weeks. I knew that something was seriously

wrong when my bone pain didn't ease up with vicodin or percoset. I can usually

take 1/4 to 1/2 a pill but with this pain I take 6 plus vicodin a day easily and

morphine; neither helps.

>

> I have never been through this before and it is a shocking experience. Last

year I literally couldn't walk 10 feet without being totally exhausted.

>

> Anyway, I will definitely keep everyone posted on what's going on and once

again thank you so much for the responses and wonderful emails.

>

> Dianne

>

[Guest guest]

Dianne,

Listen to Anita. It will save your life.

You are in trouble and you need to act quickly.

You don't even have a diagnosis.

Go to emergency. If they don't come up with a diagnosis, insist that you see

an internist (not an intern).

Zavie

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of anita

Sent: August 5, 2009 11:32 PM

Subject: Re: [ ] Re: Looking for some insight

If you have been doing this a year hun really you need to be in the

emergency room somewhere and not waiting to go in a couple of weeks. If it

is not CML you really need to be seeing an Oncologist immediately.

I almost died because of Dr's not being too concerned. I went to 6 different

Dr's and three different emergency rooms looking for some one that would do

more than sit in a chair and act like they knew it all.

You may not have a couple of more weeks to wait. You are truly scaring me. I

would be pounding on doors come first thing in the morning if not tonight.

Keep us posted

Anita

________________________________

From: islandanytime <islandanytime@ <mailto:islandanytime%40>

>

groups (DOT) <mailto:%40> com

Sent: Wednesday, August 5, 2009 9:30:51 PM

Subject: [ ] Re: Looking for some insight

Thanks to everyone for your thoughtful advice and stories. I have been

seeing a family doctor that is a little on the conservative side. I have

been referred all over the place! Physical therapy - they told me that pt

would not help since I have shortness of breath and fatigue along with the

crushing bone pain.

I'm in Colorado, by the way. I have contacted another doctor and will be

seeing him in the next couple of weeks. I knew that something was seriously

wrong when my bone pain didn't ease up with vicodin or percoset. I can

usually take 1/4 to 1/2 a pill but with this pain I take 6 plus vicodin a

day easily and morphine; neither helps.

I have never been through this before and it is a shocking experience. Last

year I literally couldn't walk 10 feet without being totally exhausted.

Anyway, I will definitely keep everyone posted on what's going on and once

again thank you so much for the responses and wonderful emails.

Dianne

[Guest guest]

Thank you for responding and Fantastic, the remission part that is!!  I never

was ill much but sluggish for years I want to say at least 4 years but the pain

settled in my back and legs the last year or so.  i went to the eye dr because i

was seeing sparklers and it was the longest appt ever only for them to say ....

Hmmmm, strange but not quite sure what it is so let's check you out again in 3

months then the headaches and pain in my muscles, joints and tender tissue took

me to the Dr and was diagnosed with FibroMyalgia spring of 04 then pains in my

chest two months later so went to ER and voila ....

 

From: richard_troxel <richard.troxel@ gmail.com>

Subject: [ ] Re: Looking for some insight

groups (DOT) com

Date: Tuesday, August 4, 2009, 9:21 PM

Dear Time,

I'm sorry, you doctor is full of beans. Any WBC over 30,000 is almost always

leukemia. I was diagnosed at 77,000.

Get to a NEW doctor immediately. With your pain and other symptoms this is an

EMERGENCY. My oncologist immediately sent me to the emergency room and admitted

me to the hospital. He said I could have dropped dead from heart failure at any

moment. I was given a blood transfusion and started on medication immediately!

Don't wait!

>

> Hi, I'm new on this forum and have a few questions. A couple of years ago I

started getting so many illnesses: repeated bronchitis, every flu that was out,

and various other issues. Last year I started having severe bone pain which sent

me to my doctor. The bone pain has escalated and now I am on morphine and other

pain meds. Very tired just doing normal things around the house and the bone

pain is still there; especially along my spine and left shoulder. My blood tests

show that my wbc is 99000. My doctor says we have to wait until the count

reaches 100,000 before we can suspect CML. They sent me to a physical therapists

who could not help, x-rays showed nothing, and I have to take more blood tests

next week. The prior blood tests do not show that anything else is wrong except

that my EOS was 8% and my c reactive protein is 34.7 - both are extremely high,

especially the latter.

>

> Is this normal? My " mystery illness " seems to be getting so much worse, I have

lost close to 10 pounds in the last couple of weeks even though I spend most of

my time sitting or lying down. Did anyone else go through various other

infections and symptoms before being diagnosed with CML; which I am almost

certain that is what is going on.

>

> Once the wbc hits 100,000 what is the next step and what can I expect? I'm a

single parent and really just want to be prepared. Thanks so much for reading my

long post and I welcome any insight.

>

[Guest guest]

Dianne,

One of the most important things someone said to me, right in the beginning,

was: " What would you be doing if this was your child? You would fight for an

answer... you would be demanding and never stop. " I had to agree. I would

fight for any one of my children! Then, she looked at me and kind of

whispered.. " You are not fighting hard enough for ANY of your children. You

need to find answers and protect yourself... because your children need

YOU! "

And she was right. As much as I hate to admit it, I was going to trust

someone else to take care of me, but I would have done anything I could to

make sure I helped my children. This time, helping my kids, meant taking

care of myself. You need to protect those kids from losing the very thing

that protects them from everything else... YOU!

Now get out there and find a doctor who will help figure out what is wrong,

so you can continue to protect those kids!!

Tammy

_____

From: richard_troxel [mailto:richard.troxel@...]

Sent: Thursday, August 06, 2009 12:48 PM

Subject: [ ] Re: Looking for some insight

Diane,

Don't wait a " couple of weeks " !!!

This is too serious to wait for. You need to see an oncologist today! Call

around, I know that they will tell you you need a referral, tell them what

your WBC is and explain that your old doctor did not feel that was serious

enough. Beg them, yell if you need too... insist on being seen!

I (we all do) know those symptoms. Even if it is not CML it is something

CRITICAL. Please do not wait.

Troxel

>

> Thanks to everyone for your thoughtful advice and stories. I have been

seeing a family doctor that is a little on the conservative side. I have

been referred all over the place! Physical therapy - they told me that pt

would not help since I have shortness of breath and fatigue along with the

crushing bone pain.

>

> I'm in Colorado, by the way. I have contacted another doctor and will be

seeing him in the next couple of weeks. I knew that something was seriously

wrong when my bone pain didn't ease up with vicodin or percoset. I can

usually take 1/4 to 1/2 a pill but with this pain I take 6 plus vicodin a

day easily and morphine; neither helps.

>

> I have never been through this before and it is a shocking experience.

Last year I literally couldn't walk 10 feet without being totally exhausted.

>

> Anyway, I will definitely keep everyone posted on what's going on and once

again thank you so much for the responses and wonderful emails.

>

> Dianne

>

[Guest guest]

Yes, if it is 99000 it should trigger an emergency response from the

dr. On the test that triggered me going to oncology the 240000 wbc was

noted C (Critical) on the lab test. My guess is 99000 would have

gotten the same label. Any wbc above 30000 is likely to be serious. If

the number is really 99000 you dr is criminally incompetent and you

should see somebody else asap.

Marcos.

On Wed, Aug 5, 2009 at 9:55 AM, Dorothy Emery<doemery@...> wrote:

>

>

> Something doesn't make sense about this. I would think any doctor

> would react immediately to a wbc that high. Are you sure that you

> aren't adding a zero to your results? I could see a doctor waiting

> for a wbc to go over 10,000 but not over 100,000. If you tell us

> exactly what your test reads we can give you more information. There

> should be a normal range listed and a big indicator somewhere on the

> cbc that the the WBC is HIGH (like an H beside the number).

>

> Why are you suspecting CML? There are other leukemias that have a wbc

> that high. Is your doctor suspecting cml or are you? If you have cml

> and a wbc of 100,000 the percentage of granulocytes would be high.

> You likely wouldn't be even mentioning the EOS percentage.

>

> We can help if you give us more information.

>

> Dorothy

>

> On Aug 4, 2009, at 7:52 PM, islandanytime wrote:

>

>> Hi, I'm new on this forum and have a few questions. A couple of

>> years ago I started getting so many illnesses: repeated bronchitis,

>> every flu that was out, and various other issues. Last year I

>> started having severe bone pain which sent me to my doctor. The bone

>> pain has escalated and now I am on morphine and other pain meds.

>> Very tired just doing normal things around the house and the bone

>> pain is still there; especially along my spine and left shoulder. My

>> blood tests show that my wbc is 99000. My doctor says we have to

>> wait until the count reaches 100,000 before we can suspect CML. They

>> sent me to a physical therapists who could not help, x-rays showed

>> nothing, and I have to take more blood tests next week. The prior

>> blood tests do not show that anything else is wrong except that my

>> EOS was 8% and my c reactive protein is 34.7 - both are extremely

>> high, especially the latter.

>>

>> Is this normal? My " mystery illness " seems to be getting so much

>> worse, I have lost close to 10 pounds in the last couple of weeks

>> even though I spend most of my time sitting or lying down. Did

>> anyone else go through various other infections and symptoms before

>> being diagnosed with CML; which I am almost certain that is what is

>> going on.

>>

>> Once the wbc hits 100,000 what is the next step and what can I

>> expect? I'm a single parent and really just want to be prepared.

>> Thanks so much for reading my long post and I welcome any insight.

>>

>>

>>

>

>