Re: new to group looking for information about pain related with CML

[Guest guest]

_booxtwo@..._ (mailto:booxtwo@...)

Don't ever think you are alone, we

are all in this together. We all have

pain and we all deal with it differently.

With warm regards,

Matt

Florida

This message (including any attachments) contains confidential information

intended for a specific individual and purpose, and is protected by law.

If you are not the intended recipient, you should delete this message, and

please advise me of your receipt. Any disclosure, copying, or distribution

of this message, or the taking of any action based on it, is strictly

prohibited.

In a message dated 10/6/2009 10:17:38 A.M. Eastern Daylight Time,

booxtwo@... writes:

Hi im new to the group I am 33 and was diagnosed five years ago. I was

not tolerent to Gleevic and was placed on hospice for some time because

my WBC at the time my was 279.000 I was at 6% blast and my pain was out

of control and was care flighted to UC do to personal reasons I

went off hospice at that time. I started Sprycel and Hydroxia at that

time and somewhat stabalized with a WBC never being below 9,800 for the

last year. I have been treated for cronic pain with several norcotics

for a few years now. I had to be a self pay because medicare nor my

privite insurance would pay for the treatments only the the

perscriptions. well I got behind in my bill and my doctor dropped me by

letter. Because of the lack of knowledge of my disease and i havent been

real great about not aggressivlly tring to find out more about my

disease, symptoms and treatment I am not real ok with just dying or

living without quality of life. To some doctors call me a dificult

patient well I have a 13 and 14 so im on a mad fight. to cut to the

chase not only have am i having withdraws from the meds my pain is

clearly out of controlled. no one understands why my pain is so bad am i

the only one that has pain like this i feel really alone here that has

pain like this or maybe its all in my head. I have had my spleen removed

I had invasive cervical cancer followed by a hystorectomy when I was 25

I am not looking to find medical advice Im only tring to find someone

that i can talk to that might relate in someway, so i dont feel so crazy

alone its been a very long five years. [(] sorry for all the info

thanks for reading

[Non-text portions of this message have been removed]

[Guest guest]

thank you for reminding me. I think I needed that. What i think bothers

me the most is that the same people that were treaating my pain all of a

sudden treat me like I dont really have pain and when I was first

dropped I asked them what to do they told me to put myself in a drug

detox program for substance abuse untill i could find a docter that is

willing to accept my insurance. It made me feel as though they only see

me as an " adict' and after so long fallowing ther treatment plan taking

all the medications they told me i needed and did help, I cant help but

wonder how much of it is cancer pain related to the accelorated

progression of my disease or have i just become so dependendent on the

meds. I guess I am asking if other patients experience sever bone,

joint, and nerve pain. Mine is so bad i cant even roll over sit up, I

cant even pick my arm back up on to the bed when I wake up its so

scarry! Is this something normal? Have you herd of anyone else

experiencing this? I am sorry I f Ive over did the questioning I am new

to the " support group " thing thank you for your time

>

> _booxtwo@..._ (mailto:booxtwo@...)

>

> Don't ever think you are alone, we

> are all in this together. We all have

> pain and we all deal with it differently.

>

> With warm regards,

>

> Matt

> Florida

>

>

> This message (including any attachments) contains confidential

information

> intended for a specific individual and purpose, and is protected by

law.

> If you are not the intended recipient, you should delete this message,

and

> please advise me of your receipt. Any disclosure, copying, or

distribution

> of this message, or the taking of any action based on it, is strictly

> prohibited.

>

>

> In a message dated 10/6/2009 10:17:38 A.M. Eastern Daylight Time,

> booxtwo@... writes:

>

>

>

>

> Hi im new to the group I am 33 and was diagnosed five years ago. I was

> not tolerent to Gleevic and was placed on hospice for some time

because

> my WBC at the time my was 279.000 I was at 6% blast and my pain was

out

> of control and was care flighted to UC do to personal reasons I

> went off hospice at that time. I started Sprycel and Hydroxia at that

> time and somewhat stabalized with a WBC never being below 9,800 for

the

> last year. I have been treated for cronic pain with several norcotics

> for a few years now. I had to be a self pay because medicare nor my

> privite insurance would pay for the treatments only the the

> perscriptions. well I got behind in my bill and my doctor dropped me

by

> letter. Because of the lack of knowledge of my disease and i havent

been

> real great about not aggressivlly tring to find out more about my

> disease, symptoms and treatment I am not real ok with just dying or

> living without quality of life. To some doctors call me a dificult

> patient well I have a 13 and 14 so im on a mad fight. to cut to the

> chase not only have am i having withdraws from the meds my pain is

> clearly out of controlled. no one understands why my pain is so bad am

i

> the only one that has pain like this i feel really alone here that has

> pain like this or maybe its all in my head. I have had my spleen

removed

> I had invasive cervical cancer followed by a hystorectomy when I was

25

> I am not looking to find medical advice Im only tring to find someone

> that i can talk to that might relate in someway, so i dont feel so

crazy

> alone its been a very long five years. [(] sorry for all the info

> thanks for reading

>

>

[Guest guest]

Hi, you are most definately not alone! I too experience quite a bit of bone

pain it sometimes brings tears to my eyes and I feel like I'm about 90 years

old! In reality I'm only 46, but my life has greatly been affected by all the

side effects of CML meds. I don't know what I would do without Perocet! The

pain is very real. You are not alone. Peggy

Sent via BlackBerry from T-Mobile

Re: [ ] new to group looking for information about pain related

with CML

thank you for reminding me. I think I needed that. What i think bothers

me the most is that the same people that were treaating my pain all of a

sudden treat me like I dont really have pain and when I was first

dropped I asked them what to do they told me to put myself in a drug

detox program for substance abuse untill i could find a docter that is

willing to accept my insurance. It made me feel as though they only see

me as an " adict' and after so long fallowing ther treatment plan taking

all the medications they told me i needed and did help, I cant help but

wonder how much of it is cancer pain related to the accelorated

progression of my disease or have i just become so dependendent on the

meds. I guess I am asking if other patients experience sever bone,

joint, and nerve pain. Mine is so bad i cant even roll over sit up, I

cant even pick my arm back up on to the bed when I wake up its so

scarry! Is this something normal? Have you herd of anyone else

experiencing this? I am sorry I f Ive over did the questioning I am new

to the " support group " thing thank you for your time

>

> _booxtwo@..._ (mailto:booxtwo@...)

>

> Don't ever think you are alone, we

> are all in this together. We all have

> pain and we all deal with it differently.

>

> With warm regards,

>

> Matt

> Florida

>

>

> This message (including any attachments) contains confidential

information

> intended for a specific individual and purpose, and is protected by

law.

> If you are not the intended recipient, you should delete this message,

and

> please advise me of your receipt. Any disclosure, copying, or

distribution

> of this message, or the taking of any action based on it, is strictly

> prohibited.

>

>

> In a message dated 10/6/2009 10:17:38 A.M. Eastern Daylight Time,

> booxtwo@... writes:

>

>

>

>

> Hi im new to the group I am 33 and was diagnosed five years ago. I was

> not tolerent to Gleevic and was placed on hospice for some time

because

> my WBC at the time my was 279.000 I was at 6% blast and my pain was

out

> of control and was care flighted to UC do to personal reasons I

> went off hospice at that time. I started Sprycel and Hydroxia at that

> time and somewhat stabalized with a WBC never being below 9,800 for

the

> last year. I have been treated for cronic pain with several norcotics

> for a few years now. I had to be a self pay because medicare nor my

> privite insurance would pay for the treatments only the the

> perscriptions. well I got behind in my bill and my doctor dropped me

by

> letter. Because of the lack of knowledge of my disease and i havent

been

> real great about not aggressivlly tring to find out more about my

> disease, symptoms and treatment I am not real ok with just dying or

> living without quality of life. To some doctors call me a dificult

> patient well I have a 13 and 14 so im on a mad fight. to cut to the

> chase not only have am i having withdraws from the meds my pain is

> clearly out of controlled. no one understands why my pain is so bad am

i

> the only one that has pain like this i feel really alone here that has

> pain like this or maybe its all in my head. I have had my spleen

removed

> I had invasive cervical cancer followed by a hystorectomy when I was

25

> I am not looking to find medical advice Im only tring to find someone

> that i can talk to that might relate in someway, so i dont feel so

crazy

> alone its been a very long five years. [(] sorry for all the info

> thanks for reading

>

>

[Guest guest]

I too had Dr's that said I am not in pain and have no reason to be in pain. 

Finally I told the Dr  " It does not matter whether or not you give me somthing

for pain. I have several friends and family members that are giving me the pain

medicines. " My Dr then wrote me an Rx.  I do not have to take something everyday

but is noce to have when needed.

The pain does ease up but just takes time.

God Bless you on your journey.

I have been at it for little over 2 years.

Anita

________________________________

From: " peggybecker@... " <peggybecker@...>

Sent: Wed, October 7, 2009 8:07:06 AM

Subject: Re: [ ] new to group looking for information about pain related

with CML

 

Hi, you are most definately not alone! I too experience quite a bit of bone pain

it sometimes brings tears to my eyes and I feel like I'm about 90 years old! In

reality I'm only 46, but my life has greatly been affected by all the side

effects of CML meds. I don't know what I would do without Perocet! The pain is

very real. You are not alone. Peggy

Sent via BlackBerry from T-Mobile

Re: [ ] new to group looking for information about pain related

with CML

thank you for reminding me. I think I needed that. What i think bothers

me the most is that the same people that were treaating my pain all of a

sudden treat me like I dont really have pain and when I was first

dropped I asked them what to do they told me to put myself in a drug

detox program for substance abuse untill i could find a docter that is

willing to accept my insurance. It made me feel as though they only see

me as an " adict' and after so long fallowing ther treatment plan taking

all the medications they told me i needed and did help, I cant help but

wonder how much of it is cancer pain related to the accelorated

progression of my disease or have i just become so dependendent on the

meds. I guess I am asking if other patients experience sever bone,

joint, and nerve pain. Mine is so bad i cant even roll over sit up, I

cant even pick my arm back up on to the bed when I wake up its so

scarry! Is this something normal? Have you herd of anyone else

experiencing this? I am sorry I f Ive over did the questioning I am new

to the " support group " thing thank you for your time

>

> _booxtwo@... _ (mailto:booxtwo@ ...)

>

> Don't ever think you are alone, we

> are all in this together. We all have

> pain and we all deal with it differently.

>

> With warm regards,

>

> Matt

> Florida

>

>

> This message (including any attachments) contains confidential

information

> intended for a specific individual and purpose, and is protected by

law.

> If you are not the intended recipient, you should delete this message,

and

> please advise me of your receipt. Any disclosure, copying, or

distribution

> of this message, or the taking of any action based on it, is strictly

> prohibited.

>

>

> In a message dated 10/6/2009 10:17:38 A.M. Eastern Daylight Time,

> booxtwo@... writes:

>

>

>

>

> Hi im new to the group I am 33 and was diagnosed five years ago. I was

> not tolerent to Gleevic and was placed on hospice for some time

because

> my WBC at the time my was 279.000 I was at 6% blast and my pain was

out

> of control and was care flighted to UC do to personal reasons I

> went off hospice at that time. I started Sprycel and Hydroxia at that

> time and somewhat stabalized with a WBC never being below 9,800 for

the

> last year. I have been treated for cronic pain with several norcotics

> for a few years now. I had to be a self pay because medicare nor my

> privite insurance would pay for the treatments only the the

> perscriptions. well I got behind in my bill and my doctor dropped me

by

> letter. Because of the lack of knowledge of my disease and i havent

been

> real great about not aggressivlly tring to find out more about my

> disease, symptoms and treatment I am not real ok with just dying or

> living without quality of life. To some doctors call me a dificult

> patient well I have a 13 and 14 so im on a mad fight. to cut to the

> chase not only have am i having withdraws from the meds my pain is

> clearly out of controlled. no one understands why my pain is so bad am

i

> the only one that has pain like this i feel really alone here that has

> pain like this or maybe its all in my head. I have had my spleen

removed

> I had invasive cervical cancer followed by a hystorectomy when I was

25

> I am not looking to find medical advice Im only tring to find someone

> that i can talk to that might relate in someway, so i dont feel so

crazy

> alone its been a very long five years. [(] sorry for all the info

> thanks for reading

>

>

[Guest guest]

Hello,

I don't post much due to pain but wanted to chime in on this topic..I am

sorry you are having to deal with such pain and stupidity of the Dr.s/staff.You

are already dealing with enough..

I have severe bone/joint/muscle pain.I was Dx with CML in May 08.I had pain

prior to CML but it got much worse after the DX..I have congenital hip

displasia,6 bulging discs and L-4 is sitting on L-5.I have nerve damage and

exposure.I have spondyolisis and scoliosis.I have bad knees but not major like

my many back issues and hip issues.

I take 30mg of M.S. Contin every twelve hours and 3 Norco daily.I also have

Flexeril for a muscle relaxer as needed.Some days THIS is NOT even enough

coverage.I see a pain management DR as regular Dr.s really have no idea how to

treat chronic pain in my opinion..Most Dr.s minimize the pain some people live

with and have no empathy.

I do understand what you are dealing with.Many days I can not get out of bed

to shower much less live an active functioning life..Life is passing me by but I

am in pain even with all the pain meds I take.

If you can find pain management you may have much better help. I am dependant

and I am ok with that.I do what I have to in order to function on the limited

basis that I do function.Without the pain meds I would have no reason to live as

I am 41 and bed ridden many days.Pain meds allow for me to get out of the bed on

average 2-3 days per week.

I hope you get the help and pain relief you deserve.Living in pain just

doesn't seem right when there are so many other ways to live..

Good luck..

SharonS

> >

>

[Guest guest]

thank you anitia its nice to know im not crazy. Ive been fighting this for five

years now. I got a staph infection MIRS i think they call it last may and had my

spleen removed a few months before that and since then my thank pain has been

out of control. My WBC is rarly under 69,000 reaching 289,000 at its highest

and Ive only tolirated the sprycell now for a year.  Its just so frustrating I

have two children and a husband that refuse to accept that every day isnt just

easy.  I really think I struggle because the doctors in my area really dont know

or understand my disease. Im sorry I really am not so negitive I think its just

starting to wear on me. Have you ever been in remission? thank you again. Ill be

back to my real self here before long, just a few bad days.

 

Dana A. Sayer-Poirier

4037 Whispering Wind PL.

Sparks, NV. 89436

(775)626-7327 or (775)345-4387

________________________________

From: anita <awristen1@...>

Sent: Wednesday, October 7, 2009 8:13:29 AM

Subject: Re: [ ] new to group looking for information about pain related

with CML

 

I too had Dr's that said I am not in pain and have no reason to be in pain. 

Finally I told the Dr  " It does not matter whether or not you give me somthing

for pain. I have several friends and family members that are giving me the pain

medicines. " My Dr then wrote me an Rx.  I do not have to take something everyday

but is noce to have when needed.

The pain does ease up but just takes time.

God Bless you on your journey.

I have been at it for little over 2 years.

Anita

____________ _________ _________ __

From: " peggybecker@ bellsouth. net " <peggybecker@ bellsouth. net>

groups (DOT) com

Sent: Wed, October 7, 2009 8:07:06 AM

Subject: Re: [ ] new to group looking for information about pain related

with CML

 

Hi, you are most definately not alone! I too experience quite a bit of bone pain

it sometimes brings tears to my eyes and I feel like I'm about 90 years old! In

reality I'm only 46, but my life has greatly been affected by all the side

effects of CML meds. I don't know what I would do without Perocet! The pain is

very real. You are not alone. Peggy

Sent via BlackBerry from T-Mobile

Re: [ ] new to group looking for information about pain related

with CML

thank you for reminding me. I think I needed that. What i think bothers

me the most is that the same people that were treaating my pain all of a

sudden treat me like I dont really have pain and when I was first

dropped I asked them what to do they told me to put myself in a drug

detox program for substance abuse untill i could find a docter that is

willing to accept my insurance. It made me feel as though they only see

me as an " adict' and after so long fallowing ther treatment plan taking

all the medications they told me i needed and did help, I cant help but

wonder how much of it is cancer pain related to the accelorated

progression of my disease or have i just become so dependendent on the

meds. I guess I am asking if other patients experience sever bone,

joint, and nerve pain. Mine is so bad i cant even roll over sit up, I

cant even pick my arm back up on to the bed when I wake up its so

scarry! Is this something normal? Have you herd of anyone else

experiencing this? I am sorry I f Ive over did the questioning I am new

to the " support group " thing thank you for your time

>

> _booxtwo@... _ (mailto:booxtwo@ ...)

>

> Don't ever think you are alone, we

> are all in this together. We all have

> pain and we all deal with it differently.

>

> With warm regards,

>

> Matt

> Florida

>

>

> This message (including any attachments) contains confidential

information

> intended for a specific individual and purpose, and is protected by

law.

> If you are not the intended recipient, you should delete this message,

and

> please advise me of your receipt. Any disclosure, copying, or

distribution

> of this message, or the taking of any action based on it, is strictly

> prohibited.

>

>

> In a message dated 10/6/2009 10:17:38 A.M. Eastern Daylight Time,

> booxtwo@... writes:

>

>

>

>

> Hi im new to the group I am 33 and was diagnosed five years ago. I was

> not tolerent to Gleevic and was placed on hospice for some time

because

> my WBC at the time my was 279.000 I was at 6% blast and my pain was

out

> of control and was care flighted to UC do to personal reasons I

> went off hospice at that time. I started Sprycel and Hydroxia at that

> time and somewhat stabalized with a WBC never being below 9,800 for

the

> last year. I have been treated for cronic pain with several norcotics

> for a few years now. I had to be a self pay because medicare nor my

> privite insurance would pay for the treatments only the the

> perscriptions. well I got behind in my bill and my doctor dropped me

by

> letter. Because of the lack of knowledge of my disease and i havent

been

> real great about not aggressivlly tring to find out more about my

> disease, symptoms and treatment I am not real ok with just dying or

> living without quality of life. To some doctors call me a dificult

> patient well I have a 13 and 14 so im on a mad fight. to cut to the

> chase not only have am i having withdraws from the meds my pain is

> clearly out of controlled. no one understands why my pain is so bad am

i

> the only one that has pain like this i feel really alone here that has

> pain like this or maybe its all in my head. I have had my spleen

removed

> I had invasive cervical cancer followed by a hystorectomy when I was

25

> I am not looking to find medical advice Im only tring to find someone

> that i can talk to that might relate in someway, so i dont feel so

crazy

> alone its been a very long five years. [(] sorry for all the info

> thanks for reading

>

>

[Guest guest]

Dana,

I was dx'x in april of 2007 at age 47 in the blast phase and the Dr told me I

 would not make it 2 years without a transplant because I was in blast. In June 

this year I made full remission started out on 140 mg of sprycel have been on 90

mg since oct or so of 2007. Everyone is affected differently.  I personally

think the chemo muscles and joints and long bones. BUT WHAT

If I want to accomplish a task  will have severe pain on my legs hips and arms.

Not because I do not do things. I am rather active. But If I want to accomplish

a whole task like clean all of the downstairs (4 rooms) mop sweep and vacuum in

one day,it will require pain pills.  And then the next day i will not take pills

but do hurt.

One of my Dr's asked me if I exercise.

Well no I cannot do push-ups or lift a gallon of milk my wrist hurt too bad, But

I am able to play with my granbabies 7 mth old and 3 years.  I work in my flower

beds, walk.

 Do not know why all the pain. I had a very high tolerence to pain before Dx and

chemo. I worked with a broke knee wrapped in an acebandage 8 yrs prior dx, was

working in a chemical plant climbing pipe racks installing instruments. Was not

a wimp but this new life I have Ha Ha I am a  big sissy. LOL

I just do not know what to say about  your family not understanding your pain

but then again they are not taking the chemo and have no clue what it does...

the Dr's are not real sure either other than KEEP US ALIVE.  Has taken me two

years and a new dr every 6 mths to finally have one that listens to me and hears

me.

If I am not mistaken there is someone on this site that has had experience with

the Nevada Dr's maybe they will chime in a direct you to a good DR.

God Bless you,

Anita

________________________________

From: dana sayer <booxtwo@...>

Sent: Wed, October 7, 2009 3:18:45 PM

Subject: Re: [ ] new to group looking for information about pain related

with CML

 

thank you anitia its nice to know im not crazy. Ive been fighting this for five

years now. I got a staph infection MIRS i think they call it last may and had my

spleen removed a few months before that and since then my thank pain has been

out of control. My WBC is rarly under 69,000 reaching 289,000 at its highest

and Ive only tolirated the sprycell now for a year.  Its just so frustrating I

have two children and a husband that refuse to accept that every day isnt just

easy.  I really think I struggle because the doctors in my area really dont know

or understand my disease. Im sorry I really am not so negitive I think its just

starting to wear on me. Have you ever been in remission? thank you again. Ill be

back to my real self here before long, just a few bad days.

 

Dana A. Sayer-Poirier

4037 Whispering Wind PL.

Sparks, NV. 89436

(775)626-7327 or (775)345-4387

____________ _________ _________ __

From: anita <awristen1 (DOT) com>

groups (DOT) com

Sent: Wednesday, October 7, 2009 8:13:29 AM

Subject: Re: [ ] new to group looking for information about pain related

with CML

 

I too had Dr's that said I am not in pain and have no reason to be in pain. 

Finally I told the Dr  " It does not matter whether or not you give me somthing

for pain. I have several friends and family members that are giving me the pain

medicines. " My Dr then wrote me an Rx.  I do not have to take something everyday

but is noce to have when needed.

The pain does ease up but just takes time.

God Bless you on your journey.

I have been at it for little over 2 years.

Anita

____________ _________ _________ __

From: " peggybecker@ bellsouth. net " <peggybecker@ bellsouth. net>

groups (DOT) com

Sent: Wed, October 7, 2009 8:07:06 AM

Subject: Re: [ ] new to group looking for information about pain related

with CML

 

Hi, you are most definately not alone! I too experience quite a bit of bone pain

it sometimes brings tears to my eyes and I feel like I'm about 90 years old! In

reality I'm only 46, but my life has greatly been affected by all the side

effects of CML meds. I don't know what I would do without Perocet! The pain is

very real. You are not alone. Peggy

Sent via BlackBerry from T-Mobile

Re: [ ] new to group looking for information about pain related

with CML

thank you for reminding me. I think I needed that. What i think bothers

me the most is that the same people that were treaating my pain all of a

sudden treat me like I dont really have pain and when I was first

dropped I asked them what to do they told me to put myself in a drug

detox program for substance abuse untill i could find a docter that is

willing to accept my insurance. It made me feel as though they only see

me as an " adict' and after so long fallowing ther treatment plan taking

all the medications they told me i needed and did help, I cant help but

wonder how much of it is cancer pain related to the accelorated

progression of my disease or have i just become so dependendent on the

meds. I guess I am asking if other patients experience sever bone,

joint, and nerve pain. Mine is so bad i cant even roll over sit up, I

cant even pick my arm back up on to the bed when I wake up its so

scarry! Is this something normal? Have you herd of anyone else

experiencing this? I am sorry I f Ive over did the questioning I am new

to the " support group " thing thank you for your time

>

> _booxtwo@... _ (mailto:booxtwo@ ...)

>

> Don't ever think you are alone, we

> are all in this together. We all have

> pain and we all deal with it differently.

>

> With warm regards,

>

> Matt

> Florida

>

>

> This message (including any attachments) contains confidential

information

> intended for a specific individual and purpose, and is protected by

law.

> If you are not the intended recipient, you should delete this message,

and

> please advise me of your receipt. Any disclosure, copying, or

distribution

> of this message, or the taking of any action based on it, is strictly

> prohibited.

>

>

> In a message dated 10/6/2009 10:17:38 A.M. Eastern Daylight Time,

> booxtwo@... writes:

>

>

>

>

> Hi im new to the group I am 33 and was diagnosed five years ago. I was

> not tolerent to Gleevic and was placed on hospice for some time

because

> my WBC at the time my was 279.000 I was at 6% blast and my pain was

out

> of control and was care flighted to UC do to personal reasons I

> went off hospice at that time. I started Sprycel and Hydroxia at that

> time and somewhat stabalized with a WBC never being below 9,800 for

the

> last year. I have been treated for cronic pain with several norcotics

> for a few years now. I had to be a self pay because medicare nor my

> privite insurance would pay for the treatments only the the

> perscriptions. well I got behind in my bill and my doctor dropped me

by

> letter. Because of the lack of knowledge of my disease and i havent

been

> real great about not aggressivlly tring to find out more about my

> disease, symptoms and treatment I am not real ok with just dying or

> living without quality of life. To some doctors call me a dificult

> patient well I have a 13 and 14 so im on a mad fight. to cut to the

> chase not only have am i having withdraws from the meds my pain is

> clearly out of controlled. no one understands why my pain is so bad am

i

> the only one that has pain like this i feel really alone here that has

> pain like this or maybe its all in my head. I have had my spleen

removed

> I had invasive cervical cancer followed by a hystorectomy when I was

25

> I am not looking to find medical advice Im only tring to find someone

> that i can talk to that might relate in someway, so i dont feel so

crazy

> alone its been a very long five years. [(] sorry for all the info

> thanks for reading

>

>

[Guest guest]

You are getting your count WC down you need to take300MG Allopurinol for the

gout,that can cause pain.

________________________________

From: dpoirier08 <booxtwo@...>

Sent: Wed, October 7, 2009 1:46:59 AM

Subject: Re: [ ] new to group looking for information about pain related

with CML

 

thank you for reminding me. I think I needed that. What i think bothers

me the most is that the same people that were treaating my pain all of a

sudden treat me like I dont really have pain and when I was first

dropped I asked them what to do they told me to put myself in a drug

detox program for substance abuse untill i could find a docter that is

willing to accept my insurance. It made me feel as though they only see

me as an " adict' and after so long fallowing ther treatment plan taking

all the medications they told me i needed and did help, I cant help but

wonder how much of it is cancer pain related to the accelorated

progression of my disease or have i just become so dependendent on the

meds. I guess I am asking if other patients experience sever bone,

joint, and nerve pain. Mine is so bad i cant even roll over sit up, I

cant even pick my arm back up on to the bed when I wake up its so

scarry! Is this something normal? Have you herd of anyone else

experiencing this? I am sorry I f Ive over did the questioning I am new

to the " support group " thing thank you for your time

>

> _booxtwo@... _ (mailto:booxtwo@ ...)

>

> Don't ever think you are alone, we

> are all in this together. We all have

> pain and we all deal with it differently.

>

> With warm regards,

>

> Matt

> Florida

>

>

> This message (including any attachments) contains confidential

information

> intended for a specific individual and purpose, and is protected by

law.

> If you are not the intended recipient, you should delete this message,

and

> please advise me of your receipt. Any disclosure, copying, or

distribution

> of this message, or the taking of any action based on it, is strictly

> prohibited.

>

>

> In a message dated 10/6/2009 10:17:38 A.M. Eastern Daylight Time,

> booxtwo@... writes:

>

>

>

>

> Hi im new to the group I am 33 and was diagnosed five years ago. I was

> not tolerent to Gleevic and was placed on hospice for some time

because

> my WBC at the time my was 279.000 I was at 6% blast and my pain was

out

> of control and was care flighted to UC do to personal reasons I

> went off hospice at that time. I started Sprycel and Hydroxia at that

> time and somewhat stabalized with a WBC never being below 9,800 for

the

> last year. I have been treated for cronic pain with several norcotics

> for a few years now. I had to be a self pay because medicare nor my

> privite insurance would pay for the treatments only the the

> perscriptions. well I got behind in my bill and my doctor dropped me

by

> letter. Because of the lack of knowledge of my disease and i havent

been

> real great about not aggressivlly tring to find out more about my

> disease, symptoms and treatment I am not real ok with just dying or

> living without quality of life. To some doctors call me a dificult

> patient well I have a 13 and 14 so im on a mad fight. to cut to the

> chase not only have am i having withdraws from the meds my pain is

> clearly out of controlled. no one understands why my pain is so bad am

i

> the only one that has pain like this i feel really alone here that has

> pain like this or maybe its all in my head. I have had my spleen

removed

> I had invasive cervical cancer followed by a hystorectomy when I was

25

> I am not looking to find medical advice Im only tring to find someone

> that i can talk to that might relate in someway, so i dont feel so

crazy

> alone its been a very long five years. [(] sorry for all the info

> thanks for reading

>

>