Re: Re: CML & Disability Sandi-

[Guest guest]

Sandi-

Thanks for sharing your daughters experience with CML. Sounds like she is

doing well. Although some of us have pushed ourselves to work as well,

there has come a time where our quality of life suffers and we needed to use

the medical disability. I as well have 3 very busy children and worked

very hard as a RN before stopping to be home resting which would then allow me

to care for them and be a wife to my hubby.

I do struggle mentally with not working and wish that physically I was able

to still. I love my job and the money that it provided for my family. I

don't think it has anything to do with the PCR results, in my opinion as

you mentioned as I too went into PCRU and still have a 0.000 over a 3 log

reduction. I guess its more about how we tolerate the side effects and to

the degree in which we suffer with them. My RBC runs around 3.0 and my H & H

is always anemic. I suppose we are all very different in some ways how it

affects us. I also have a mom who drops everything for me which has been a

blessing. Family is what matters in the end.

I wish your daughter continued success fighting CML. Happy Holidays!

(38)

CML 5/13/05 age 33

Gleevec 800mg until 8/07

Sprycel 100mg since

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

PCRU x 3 years

In a message dated 12/15/2010 2:22:52 P.M. Central Standard Time,

sandi3533@... writes:

Hi All.

My daughter, Robyn, is a 43 year old single parent with an extremely

demanding, importamt, and stressfull job. She has experienced the many side

effects of Gleevec, the nausea, fatigue, etc. Her son is 3 and very active. She

pushes herself to work, but takes off when she is exhausted or has a bad

cold.

My grandson is a very active child who is in daycare until 6:00P.M. when

he is picked up and brought home to eat, bathe, etc. I go there every day to

help. Mentally it is better for her to work. She hasn't asked to be put on

disability. I believe her doctor wouldn't put her on it anyway. I feel

that each person is different in the way he/she is effected by Gleevec. My

daughter pushes through her job. Then again, she was diagnosed in Feb.09 , was

put on hydroxyurea, then Gleevec. By March09 her log was .1, April.001 ,

May 09 it was .01, and Sept 2010. .0000

I don't know whether these numbers which show that she went quickly in to

total remission any thing to do with her working. I will say that some days

her red cells were so low that she couldn't get out of bed. lately the red

count went up to 11.5.

Sandi

>

> From: vegasrnjen@... <vegasrnjen@...>

> Subject: Re: [ ] CML & Disability Kathy

> _ _ (mailto: )

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

>

> Â

>

> 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@... 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

>

>