Re: Re: CML & Disability---Leah/Bobby

[Guest guest]

Thanks Bobby-

Hey that's the difference is the trial pays everything. Thanks for the

info. Was just trying to see if I could figure something out....comes down

to gotta keep hubby alive, happy and working! LOL

Love my babe!

Thanks again for the info!

Jen

In a message dated 12/15/2010 2:57:53 P.M. Central Standard Time,

rcd1929@... writes:

when you reach the " donut holw " , you pay it all, they pay nothing. My

Restasis this month was going to be $550.00/3 months, vs the usual $90.00.

So I will wait until Jan. to order it. fortunately I am in the Ariad trial

and do not pay for it. Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

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

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

Subject: Re: [ ] Re: CML & Disability---Leah

_ _ (mailto: )

Date: Wednesday, December 15, 2010, 2:43 PM

Do you have insurance for drug prescription? How much does Medicare pay

of it? I thought there was big donut whole in which they don't cover much?

I am covered under my hubby's insurance which is wonderful! I pay $20

for my Sprycel every month! Can't beat that! But if hubby ever lost his

job, died, divorce.....What would I do? I do have Medicare A and B due to

having disability but didn't find a plan in Medicare D that I could afford

without paying 20% of Sprycel costs?............

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 12/15/2010 1:33:23 P.M. Central Standard Time,

_leahpeer@..._ (mailto:leahpeer@...) writes:

Hi All,

I remember, at dx (at age 47), being told by the social worker about

filing for disability and having it get lost in a total blur of dealing

with CML

et al.

After 8 months I came to the realization that I would never be going back

to work in the same way (I am a musician and was teaching general music

and

choir to kids ages 3-14, at a private school). at the time I was suffering

from severe fatigue, anemia and depression.

I filed for disability and got it very quickly. I was living in Florida at

the time (2005). I didn't even realize that after 2 years i would qualify

for medicare. that turned out to be SUCH a lifesaver, since the company

that my husband was working for went bankrupt the year a qualified (no

COBRA

when a company goes into bankruptcy liquidation..). Since I was never the

main bread winner, my disability pay is not very much money -but the

medicare

coverage is worth it's weight in gold!

I have since heard from people on the lists that have had great difficulty

getting disability. It seems to depend a lot on where you live (CA seems

to be particularly tough).

I don't know how anyone manages to continue working full time with CML. I

do little bits and pieces of things, freelance, but can't imagine how I

would manage more than what I do.

If your ability to do your job is compromised, get to work on those forms

(on the soc sec website). they are quite time consuming, but not hard to

do. As has been suggested, emphasize how your ability has been

compromised.

You may want to check with your docs if any of your symptoms have a fancy

medical name you can use (LOL)

best of luck,

Leah

>

> 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

>

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