Re: CML & Disability Kathy/susan

[Guest guest]

Just wanted to add that I also have pain in my spine, neck, back area. I

am only 38 yrs olf and have been told I now have Osteoporosis as well as

Fibromylagia.....I guess the drugs/disease cause this somehow?.....Just

wanted to throw that out there as well.

In a message dated 12/14/2010 8:17:22 P.M. Central Standard Time,

chimera46@... writes:

Hello CML Family-

This subject of disability is never far from my thoughts. I'm fortunate

in

that I'm on only 400 mg of Gleevec but that first year was really rough

with

the side effects. I've changed positions to something less stressful

because I

had a almost non existent immune system at first and I now have a pretty

foggy

brain. I'll be 59 in April and still work fulltime. Luckily -my employer

doesn't mind if I take some time vacation hours if I'm tired or if the

meds make

me sick which still happens - no rhyme or reason. I'm probably headed for

layoff

in the next fiscal cycle-so I'm job hunting now.

I worry about not having insurance, if I stop working- I'm a divorced mom

with a

16 year old, daughter . So no husband to help with insurance. There was

a

woman here in Southern California who advertised fr a husband so she could

get

insurance- she had lots of health problems. I thought she was crazy at

the time

but now...maybe not so crazy.

- you mentioned arthritis- I have been dx with having arthritis in

my

spine( I've had chronic pain for about 5 months). Do you think there is a

connection to either CML or gleevec?

________________________________

From: Armour <_suzzienovember@..._

(mailto:suzzienovember@...) >

_ _ (mailto: )

Sent: Tue, December 14, 2010 3:12:26 PM

Subject: Re: [ ] CML & Disability Kathy

HI: This question comes up a lot. When I was diagnosed with my CML in

1998, I

did try to keep working. I was on Interferon shots everyday, and then

added

Ara-C shots every other week. I worked in a medical office, and was on my

feet a

lot. Felt like I had the flu 24/7. Anyone who did the original treatment

for

CML before all our TKI's knows what I mean. I was around sick people

constantly

sneezing and coughing in my face. I got Pneumonia, and just sick all the

time.

I started out on Temporary Disability, and then went through hell trying

to get

my Permanent Disability. I had to fight to get it, and appeal the

refusal.

This all happened before I even went into the clinical trial for Gleevec.

I

worked for the Oncologist who found my CML, and he could not even help me

out at

first. Then he spoke to someone on the phone at Disability, and it went

through

for me. Now I have Arthritis so bad along with the side effects of my

Gleevec. My family can see that I was not able to work anymore, but SS

Disability was rough. Some people get it with no problem, and others have

to

appeal sometimes twice before they get approved.

You know your own body, and what you can tolerate. If you feel you have

to

stop working, then just fight for it till they hear you. You also have to

give

them every detail, and answer all the questions accurately so they cannot

deny

you.

A.

From: _vegasrnjen@..._ (mailto:vegasrnjen@...)

<_vegasrnjen@..._ (mailto:vegasrnjen@...) >

Subject: Re: [ ] CML & Disability Kathy

_ _ (mailto: )

Date: Tuesday, December 14, 2010, 2:22 PM

hey ya'll,

I am a 38 yr old CML patient. I was dx at 33 and filed for disability at

age 35 and was approved without a problem. I too had the same symptoms

that you have mentioned. What I can say to you is focus your paperwork on

your symptoms, not the cancer. Cancer is NOT a disability. I focused on my

symptoms of daily muscle and bone pain, SOB, poor thinking, N/V, severe

fatigue......And of course, my doctors supported this in what their

documentation stated. I also switched to Spyrcel which reduced the

intensity of

the

symptoms but still can't work. I just came up on my 3 year review for

disability and am still approved. I have heard of stories of people having

to

reapply over and over and fight with the denials but I really had no

problem. I had great DR support and I really stayed in contact with my

disability

lady. I talked to her on the phone and made sure she knew I was a real

person with a real disease, NOT just a paper stack or a number on her

desk.....Educated them as you go. Be your own advocate!!

Good luck and please let me know if I can help any further! Be strong!

RN

CML 5/13/05

Gleevec 800mg until 8/07

Sprycel 100mg since

Wife and mom to 3 (14,11,9)

PCRU x 3 years

In a message dated 12/14/2010 12:58:52 P.M. Central Standard Time,

_nwatson@..._ (mailto:nwatson@...)

writes:

I would like to hear about this as well.

I was on State Disability Ins for about 6 months last year. My company has

worked with me, and I was able to work part time for about 3 months of the

6. Now my hours are somewhat erratic, but thankfully they have been

understanding.

Switching from Gleevec to Sprycel has helped me, though I think I can only

keep this up for so long.

I am having a hard time doing this at 30, I couldn't imagine being 51 and

still trying to work full time. I'm hoping to be in a position where I can

go Social Security without losing everything, by the time I hit 40.

-----Original Message-----

From: __ _ (mailto:_ ) _

(mailto:_ _ (mailto: ) )

[mailto:__ _ (mailto:_ ) _

(mailto:_ _ (mailto: ) ) ] On Behalf Of

Karyn

Sent: Tuesday, December 14, 2010 10:35 AM

__ _ (mailto:_ ) _

(mailto:_ _ (mailto: ) )

Subject: [ ] CML & Disability

Hi Everyone-

Ive been on Gleevec for 2.5 yrs and have suffered through the ongoing side

effects of fatigue, muscle cramps, anxiety, depression. My Primary Care

Doctor has put me out on Short Term Disability from my high stress job. I

am

deciding whether i apply for Long Term Disability Social Security, i am 51

yrs old and have had a 25 yr career with my employer, my job requires

exstensive critical thinking and analytical skills in a high

pressure/stress

environment.I know i cannot continue the hours and the intensity of my

current position.

My question to the group is... has everyone continued to work through all

of

this? What has your experience been related to disability short term and

long term?

Thanks,

Karyn

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

RN

CML 5/13/05

Gleevec 800mg until 8/07

sprycel 100mg since

Wife and mom to 3 (14,11,9)

PCRU x 3 years

RN

CML 5/13/05

Gleevec 800mg until 8/07

sprycel 100mg since

Wife and mom to 3 (14,11,9)

PCRU x 3 years

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

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

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

[Guest guest]

In answer to the question about pain in the spine and relation to the CML or

Gleevec. No there is no connection. You might have hurt your back at some

point, and then Arthritis set in. That is not always the case, but I had hurt

my tailbone in high school. As I got older I started to get the Degeneration in

the spine which started in the sacrum and then has gone into other joints. My

daughter is complaining of a lot of pain in her spine and back. She is also 38,

but she was in a car accident when she was in her teens. So many times if you

think back you can remember a injury before you get Arthritis. The doctor even

told her back then that she would develop Arthritis as she got older due to

hurting her hip in the accident. She complains of hip pain also.

A.

>

> From: _vegasrnjen@..._ (mailto:vegasrnjen@...)

> <_vegasrnjen@..._ (mailto:vegasrnjen@...) >

> Subject: Re: [ ] CML & Disability Kathy

> _ _ (mailto: )

> Date: Tuesday, December 14, 2010, 2:22 PM

>

>

>

> hey ya'll,

>

> I am a 38 yr old CML patient. I was dx at 33 and filed for disability at

> age 35 and was approved without a problem. I too had the same symptoms

> that you have mentioned. What I can say to you is focus your paperwork on

> your symptoms, not the cancer. Cancer is NOT a disability. I focused on my

>

> symptoms of daily muscle and bone pain, SOB, poor thinking, N/V, severe

> fatigue......And of course, my doctors supported this in what their

> documentation stated. I also switched to Spyrcel which reduced the

> intensity of

> the

>

> symptoms but still can't work. I just came up on my 3 year review for

> disability and am still approved. I have heard of stories of people having

> to

> reapply over and over and fight with the denials but I really had no

> problem. I had great DR support and I really stayed in contact with my

> disability

>

> lady. I talked to her on the phone and made sure she knew I was a real

> person with a real disease, NOT just a paper stack or a number on her

> desk.....Educated them as you go. Be your own advocate!!

>

> Good luck and please let me know if I can help any further! Be strong!

>

> RN

> CML 5/13/05

> Gleevec 800mg until 8/07

> Sprycel 100mg since

> Wife and mom to 3 (14,11,9)

> PCRU x 3 years

>

> In a message dated 12/14/2010 12:58:52 P.M. Central Standard Time,

> _nwatson@..._ (mailto:nwatson@...)

> writes:

>

> I would like to hear about this as well.

>

> I was on State Disability Ins for about 6 months last year. My company has

> worked with me, and I was able to work part time for about 3 months of the

> 6. Now my hours are somewhat erratic, but thankfully they have been

> understanding.

>

> Switching from Gleevec to Sprycel has helped me, though I think I can only

> keep this up for so long.

>

> I am having a hard time doing this at 30, I couldn't imagine being 51 and

> still trying to work full time. I'm hoping to be in a position where I can

> go Social Security without losing everything, by the time I hit 40.

>

> -----Original Message-----

> From: __ _ (mailto:_ ) _

> (mailto:_ _ (mailto: ) )

> [mailto:__ _ (mailto:_ ) _

> (mailto:_ _ (mailto: ) ) ] On Behalf Of

> Karyn

> Sent: Tuesday, December 14, 2010 10:35 AM

> __ _ (mailto:_ ) _

> (mailto:_ _ (mailto: ) )

> Subject: [ ] CML & Disability

>

> Hi Everyone-

> Ive been on Gleevec for 2.5 yrs and have suffered through the ongoing side

> effects of fatigue, muscle cramps, anxiety, depression. My Primary Care

> Doctor has put me out on Short Term Disability from my high stress job. I

> am

> deciding whether i apply for Long Term Disability Social Security, i am 51

> yrs old and have had a 25 yr career with my employer, my job requires

> exstensive critical thinking and analytical skills in a high

> pressure/stress

> environment.I know i cannot continue the hours and the intensity of my

> current position.

> My question to the group is... has everyone continued to work through all

> of

> this? What has your experience been related to disability short term and

> long term?

> Thanks,

>

> Karyn

>

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

>

> RN

> CML 5/13/05

> Gleevec 800mg until 8/07

> sprycel 100mg since

> Wife and mom to 3 (14,11,9)

> PCRU x 3 years

>

> RN

> CML 5/13/05

> Gleevec 800mg until 8/07

> sprycel 100mg since

> Wife and mom to 3 (14,11,9)

> PCRU x 3 years

>

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

>

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

>

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

>

>

>

>

>

>

>

[Guest guest]

My cancer doc is thinking my hip pain might be avascular necrosis of the

hip. The marrow is producing too much liquid and that eats away at the bone

around the top of the femur. He says it is a side effect of leukemia, even

in remission. I had xrays done, now waiting to find the results. Bone pain

on Gleevec is normal. on Tasigna not so much.

I am having a hard time walking - around the mall is too much. Sitting in

the car for long periods of time is bad too. I've had a lot of pain since

Wed. car trip. L

Tammy

From: A [mailto:suzzienovember@...]

Sent: Saturday, December 18, 2010 4:59 PM

Subject: Re: [ ] CML & Disability Kathy/susan

In answer to the question about pain in the spine and relation to the CML or

Gleevec. No there is no connection. You might have hurt your back at some

point, and then Arthritis set in. That is not always the case, but I had

hurt my tailbone in high school. As I got older I started to get the

Degeneration in the spine which started in the sacrum and then has gone into

other joints. My daughter is complaining of a lot of pain in her spine and

back. She is also 38, but she was in a car accident when she was in her

teens. So many times if you think back you can remember a injury before you

get Arthritis. The doctor even told her back then that she would develop

Arthritis as she got older due to hurting her hip in the accident. She

complains of hip pain also.

A.

>

> From: _vegasrnjen@..._ (mailto:vegasrnjen@...)

> <_vegasrnjen@..._ (mailto:vegasrnjen@...) >

> Subject: Re: [ ] CML & Disability Kathy

> _ <mailto:_%40> _

(mailto: <mailto:%40> )

> Date: Tuesday, December 14, 2010, 2:22 PM

>

>

>

> hey ya'll,

>

> I am a 38 yr old CML patient. I was dx at 33 and filed for disability at

> age 35 and was approved without a problem. I too had the same symptoms

> that you have mentioned. What I can say to you is focus your paperwork on

> your symptoms, not the cancer. Cancer is NOT a disability. I focused on my

>

> symptoms of daily muscle and bone pain, SOB, poor thinking, N/V, severe

> fatigue......And of course, my doctors supported this in what their

> documentation stated. I also switched to Spyrcel which reduced the

> intensity of

> the

>

> symptoms but still can't work. I just came up on my 3 year review for

> disability and am still approved. I have heard of stories of people having

> to

> reapply over and over and fight with the denials but I really had no

> problem. I had great DR support and I really stayed in contact with my

> disability

>

> lady. I talked to her on the phone and made sure she knew I was a real

> person with a real disease, NOT just a paper stack or a number on her

> desk.....Educated them as you go. Be your own advocate!!

>

> Good luck and please let me know if I can help any further! Be strong!

>

> RN

> CML 5/13/05

> Gleevec 800mg until 8/07

> Sprycel 100mg since

> Wife and mom to 3 (14,11,9)

> PCRU x 3 years

>

> In a message dated 12/14/2010 12:58:52 P.M. Central Standard Time,

> _nwatson@..._ (mailto:nwatson@...)

> writes:

>

> I would like to hear about this as well.

>

> I was on State Disability Ins for about 6 months last year. My company has

> worked with me, and I was able to work part time for about 3 months of the

> 6. Now my hours are somewhat erratic, but thankfully they have been

> understanding.

>

> Switching from Gleevec to Sprycel has helped me, though I think I can only

> keep this up for so long.

>

> I am having a hard time doing this at 30, I couldn't imagine being 51 and

> still trying to work full time. I'm hoping to be in a position where I can

> go Social Security without losing everything, by the time I hit 40.

>

> [ ] CML & Disability

>

> Hi Everyone-

> Ive been on Gleevec for 2.5 yrs and have suffered through the ongoing side

> effects of fatigue, muscle cramps, anxiety, depression. My Primary Care

> Doctor has put me out on Short Term Disability from my high stress job. I

> am

> deciding whether i apply for Long Term Disability Social Security, i am 51

> yrs old and have had a 25 yr career with my employer, my job requires

> exstensive critical thinking and analytical skills in a high

> pressure/stress

> environment.I know i cannot continue the hours and the intensity of my

> current position.

> My question to the group is... has everyone continued to work through all

> of

> this? What has your experience been related to disability short term and

> long term?

> Thanks,

>

> Karyn

>

>

[Guest guest]

Just wanted to chime in that I don't agree with re CMl and back/spine

pain.

Many people complain of arthritis and fibromyalgia type pain while taking TKI's.

These pains can be anywhere -some folks complain more of extremities, others

have more back and neck stuff.

I know that for myself, I am in a constant state of inflammation - sometimes

better sometimes worse. Certainly if I disregard my maintenance routine (yoga,

weights, walking, chiropractic, massage) the pain is much worse.

- have you had a bone density test for Osteoporosis, or is the doctor

just assuming based on your symptoms? If you truly have osteoporosis, you CAN

reverse this (especially at your age) with weight bearing exercise and some of

the new drugs.

Leah

>

> From: _vegasrnjen@..._ (mailto:vegasrnjen@...)

> <_vegasrnjen@..._ (mailto:vegasrnjen@...) >

> Subject: Re: [ ] CML & Disability Kathy

> _ _ (mailto: )

> Date: Tuesday, December 14, 2010, 2:22 PM

>

>

>

> hey ya'll,

>

> I am a 38 yr old CML patient. I was dx at 33 and filed for disability at

> age 35 and was approved without a problem. I too had the same symptoms

> that you have mentioned. What I can say to you is focus your paperwork on

> your symptoms, not the cancer. Cancer is NOT a disability. I focused on my

>

> symptoms of daily muscle and bone pain, SOB, poor thinking, N/V, severe

> fatigue......And of course, my doctors supported this in what their

> documentation stated. I also switched to Spyrcel which reduced the

> intensity of

> the

>

> symptoms but still can't work. I just came up on my 3 year review for

> disability and am still approved. I have heard of stories of people having

> to

> reapply over and over and fight with the denials but I really had no

> problem. I had great DR support and I really stayed in contact with my

> disability

>

> lady. I talked to her on the phone and made sure she knew I was a real

> person with a real disease, NOT just a paper stack or a number on her

> desk.....Educated them as you go. Be your own advocate!!

>

> Good luck and please let me know if I can help any further! Be strong!

>

> RN

> CML 5/13/05

> Gleevec 800mg until 8/07

> Sprycel 100mg since

> Wife and mom to 3 (14,11,9)

> PCRU x 3 years

>

> In a message dated 12/14/2010 12:58:52 P.M. Central Standard Time,

> _nwatson@..._ (mailto:nwatson@...)

> writes:

>

> I would like to hear about this as well.

>

> I was on State Disability Ins for about 6 months last year. My company has

> worked with me, and I was able to work part time for about 3 months of the

> 6. Now my hours are somewhat erratic, but thankfully they have been

> understanding.

>

> Switching from Gleevec to Sprycel has helped me, though I think I can only

> keep this up for so long.

>

> I am having a hard time doing this at 30, I couldn't imagine being 51 and

> still trying to work full time. I'm hoping to be in a position where I can

> go Social Security without losing everything, by the time I hit 40.

>

> -----Original Message-----

> From: __ _ (mailto:_ ) _

> (mailto:_ _ (mailto: ) )

> [mailto:__ _ (mailto:_ ) _

> (mailto:_ _ (mailto: ) ) ] On Behalf Of

> Karyn

> Sent: Tuesday, December 14, 2010 10:35 AM

> __ _ (mailto:_ ) _

> (mailto:_ _ (mailto: ) )

> Subject: [ ] CML & Disability

>

> Hi Everyone-

> Ive been on Gleevec for 2.5 yrs and have suffered through the ongoing side

> effects of fatigue, muscle cramps, anxiety, depression. My Primary Care

> Doctor has put me out on Short Term Disability from my high stress job. I

> am

> deciding whether i apply for Long Term Disability Social Security, i am 51

> yrs old and have had a 25 yr career with my employer, my job requires

> exstensive critical thinking and analytical skills in a high

> pressure/stress

> environment.I know i cannot continue the hours and the intensity of my

> current position.

> My question to the group is... has everyone continued to work through all

> of

> this? What has your experience been related to disability short term and

> long term?

> Thanks,

>

> Karyn

>

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

>

> RN

> CML 5/13/05

> Gleevec 800mg until 8/07

> sprycel 100mg since

> Wife and mom to 3 (14,11,9)

> PCRU x 3 years

>

> RN

> CML 5/13/05

> Gleevec 800mg until 8/07

> sprycel 100mg since

> Wife and mom to 3 (14,11,9)

> PCRU x 3 years

>

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

>

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

>

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

>

>

>

>

>

>

>

[Guest guest]

Leah,

Yes, I have had Osterporosis confirmed by 2 bone density's over the lat 3-4

years. I have it in the base on my spine as well in pelvic bone and left

hip. I was taking boniva monthly and am now doing the once yearly IV

infusion given at my Oncologist's infusion clinic. I also do light exercises

with weights.

I always have inflammation in my body as well as excess fluids, I guess due

to meds.... I have always been one of those lucky people as far as not

needing to diet and exercise. I guess that has been a blessing. I have

always been perfect height/weight so only exercise for healthier bones.

In a message dated 12/19/2010 10:32:32 A.M. Central Standard Time,

leahpeer@... writes:

Just wanted to chime in that I don't agree with re CMl and back/spine

pain.

Many people complain of arthritis and fibromyalgia type pain while taking

TKI's.

These pains can be anywhere -some folks complain more of extremities,

others have more back and neck stuff.

I know that for myself, I am in a constant state of inflammation -

sometimes better sometimes worse. Certainly if I disregard my maintenance

routine

(yoga, weights, walking, chiropractic, massage) the pain is much worse.

- have you had a bone density test for Osteoporosis, or is the

doctor just assuming based on your symptoms? If you truly have osteoporosis,

you CAN reverse this (especially at your age) with weight bearing exercise

and some of the new drugs.

Leah

>

> From: _vegasrnjen@..._ (mailto:vegasrnjen@...)

> <_vegasrnjen@..._ (mailto:vegasrnjen@...) >

> Subject: Re: [ ] CML & Disability Kathy

> __ _ (mailto:_ ) _

(mailto:_ _ (mailto: ) )

> Date: Tuesday, December 14, 2010, 2:22 PM

>

>

>

> hey ya'll,

>

> I am a 38 yr old CML patient. I was dx at 33 and filed for disability at

> age 35 and was approved without a problem. I too had the same symptoms

> that you have mentioned. What I can say to you is focus your paperwork

on

> your symptoms, not the cancer. Cancer is NOT a disability. I focused on

my

>

> symptoms of daily muscle and bone pain, SOB, poor thinking, N/V, severe

> fatigue......And of course, my doctors supported this in what their

> documentation stated. I also switched to Spyrcel which reduced the

> intensity of

> the

>

> symptoms but still can't work. I just came up on my 3 year review for

> disability and am still approved. I have heard of stories of people

having

> to

> reapply over and over and fight with the denials but I really had no

> problem. I had great DR support and I really stayed in contact with my

> disability

>

> lady. I talked to her on the phone and made sure she knew I was a real

> person with a real disease, NOT just a paper stack or a number on her

> desk.....Educated them as you go. Be your own advocate!!

>

> Good luck and please let me know if I can help any further! Be strong!

>

> RN

> CML 5/13/05

> Gleevec 800mg until 8/07

> Sprycel 100mg since

> Wife and mom to 3 (14,11,9)

> PCRU x 3 years

>

> In a message dated 12/14/2010 12:58:52 P.M. Central Standard Time,

> _nwatson@..._ (mailto:nwatson@...)

> writes:

>

> I would like to hear about this as well.

>

> I was on State Disability Ins for about 6 months last year. My company

has

> worked with me, and I was able to work part time for about 3 months of

the

> 6. Now my hours are somewhat erratic, but thankfully they have been

> understanding.

>

> Switching from Gleevec to Sprycel has helped me, though I think I can

only

> keep this up for so long.

>

> I am having a hard time doing this at 30, I couldn't imagine being 51 and

> still trying to work full time. I'm hoping to be in a position where I

can

> go Social Security without losing everything, by the time I hit 40.

>

> [ ] CML & Disability

>

> Hi Everyone-

> Ive been on Gleevec for 2.5 yrs and have suffered through the ongoing

side

> effects of fatigue, muscle cramps, anxiety, depression. My Primary Care

> Doctor has put me out on Short Term Disability from my high stress job.

I

> am

> deciding whether i apply for Long Term Disability Social Security, i am

51

> yrs old and have had a 25 yr career with my employer, my job requires

> exstensive critical thinking and analytical skills in a high

> pressure/stress

> environment.I know i cannot continue the hours and the intensity of my

> current position.

> My question to the group is... has everyone continued to work through

all

> of

> this? What has your experience been related to disability short term and

> long term?

> Thanks,

>

> Karyn

>

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

>

> RN

> CML 5/13/05

> Gleevec 800mg until 8/07

> sprycel 100mg since

> Wife and mom to 3 (14,11,9)

> PCRU x 3 years

>

> RN

> CML 5/13/05

> Gleevec 800mg until 8/07

> sprycel 100mg since

> Wife and mom to 3 (14,11,9)

> PCRU x 3 years

>

>