Re: Re: Question about Disability

[Guest guest]

Thankyou Tracey, I have never know anyone with CML or even heard of it for that

matter, and yes I have not settled in as far as diagnosis and Gleevec, but had

noticed one of the side effects of the medication was lower red and hbg counts,

I hope that won't be the case, and I agree that time will be an indicative

factor for both. I am becoming more educated by the day about something I

previously knew nothing about. Thank you again for your response and

information,  dx Aug. 2009

________________________________

From: traceyincanada <traceyincanada@...>

Sent: Fri, October 2, 2009 12:19:07 PM

Subject: [ ] Re: Question about Disability

 

Hi ,

I'll let others chime in on the disability aspect as I know there are some who

have gone on it but I did want to say that if you can get your Hgb up to normal

levels, I don't doubt that you'll feel a whole lot better and with tons more

energy.

I think most of the people with CML live fairly " normal " lives which is to say

they continue to work and live as they did before they got CML but there are

some who have difficulty with side effects and are not able to. Only time will

tell which category you'll fit into but please give yourself some time to adjust

to the diagnosis and treatment. I think you'll be pleasantly surprised to see

how much better things can get.

Tracey

dx Jan 2002

>

> My name is ,after feeling steadily weaker over the last year, I went to

the doctor on Aug. 25th, the next day I was told that i had luekemia and that I

had to get to the hospital. Being without insurance I made the one and a half

hour drive to Corvallis, Oregon, I live in a small town on the coast. The

oncologist told me I had CML. I was put on hydroxuria and given three pints of

blood to bring me back up to 9.0 in hemo. and since have had to go in for 2

units about every 12 days. Thru the program at Novartis, I received a 30 day

supply of gleevec, to day is my 2nd day on it, currently no ill effects. I have

filed for and just received medical support and food stamps from Oregon. I have

also applied for SS/DI, as I can't imagine being able to go back to work in the

next year, I am 51 and always in pretty good health and shape, but this

has weakened me to the point I have to nap and I wear out trying to do everyday

chores, My question is, is

> anyone considered disabled with CML, my Oncologist originally told me, when I

mentioned to him that I had was going to file SS/DI, that he may be able to get

me back to work in a couple of months, I worked construction, and currently

cant.t see it any time soon, altho I pumped gas the last couple of months prior

to being diagnosed, untill I couldn't do that either because of lack of

strength, I had to try to make some kind of money, there is no cash assistance

and Iam just wondering if others have experianced this type of sittuation,

thankyou,  

>

>

>

>

>

[Guest guest]

Hang in there and you feel free to ask any questions that come

up-anything at all. Even if they sound funny.

I have had CML for 5 and a half years. Started with Gleevec, then on to

Sprycel (both gave me terrible side effects) now on Tasigna and doing very

very well. PCRU for over a year andyes you can lead a normal life. I do.

Sharon T

_____

From: [mailto: ] On Behalf Of john

laghlin

Sent: Friday, October 02, 2009 12:37 PM

Subject: Re: [ ] Re: Question about Disability

Thankyou Tracey, I have never know anyone with CML or even heard of it for

that matter, and yes I have not settled in as far as diagnosis and Gleevec,

but had noticed one of the side effects of the medication was lower red and

hbg counts, I hope that won't be the case, and I agree that time will be an

indicative factor for both. I am becoming more educated by the day about

something I previously knew nothing about. Thank you again for your response

and information, dx Aug. 2009

________________________________

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

>

groups (DOT) <mailto:%40> com

Sent: Fri, October 2, 2009 12:19:07 PM

Subject: [ ] Re: Question about Disability

Hi ,

I'll let others chime in on the disability aspect as I know there are some

who have gone on it but I did want to say that if you can get your Hgb up to

normal levels, I don't doubt that you'll feel a whole lot better and with

tons more energy.

I think most of the people with CML live fairly " normal " lives which is to

say they continue to work and live as they did before they got CML but there

are some who have difficulty with side effects and are not able to. Only

time will tell which category you'll fit into but please give yourself some

time to adjust to the diagnosis and treatment. I think you'll be pleasantly

surprised to see how much better things can get.

Tracey

dx Jan 2002

>

> My name is ,after feeling steadily weaker over the last year, I went

to the doctor on Aug. 25th, the next day I was told that i had luekemia and

that I had to get to the hospital. Being without insurance I made the one

and a half hour drive to Corvallis, Oregon, I live in a small town on the

coast. The oncologist told me I had CML. I was put on hydroxuria and given

three pints of blood to bring me back up to 9.0 in hemo. and since have had

to go in for 2 units about every 12 days. Thru the program at Novartis, I

received a 30 day supply of gleevec, to day is my 2nd day on it, currently

no ill effects. I have filed for and just received medical support and food

stamps from Oregon. I have also applied for SS/DI, as I can't imagine being

able to go back to work in the next year, I am 51 and always in pretty good

health and shape, but this has weakened me to the point I have to nap and I

wear out trying to do everyday chores, My question is, is

> anyone considered disabled with CML, my Oncologist originally told me,

when I mentioned to him that I had was going to file SS/DI, that he may be

able to get me back to work in a couple of months, I worked construction,

and currently cant.t see it any time soon, altho I pumped gas the last

couple of months prior to being diagnosed, untill I couldn't do that either

because of lack of strength, I had to try to make some kind of money, there

is no cash assistance and Iam just wondering if others have experianced this

type of sittuation, thankyou,

>

>

>

>

>

[Guest guest]

Hi Sharon T. hope you continue to do well, thankyou for the information,

________________________________

From: Sharon Teichera <onthewtr@...>

Sent: Fri, October 2, 2009 12:40:42 PM

Subject: RE: [ ] Re: Question about Disability

 

Hang in there and you feel free to ask any questions that come

up-anything at all. Even if they sound funny.

I have had CML for 5 and a half years. Started with Gleevec, then on to

Sprycel (both gave me terrible side effects) now on Tasigna and doing very

very well. PCRU for over a year andyes you can lead a normal life. I do.

Sharon T

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of john

laghlin

Sent: Friday, October 02, 2009 12:37 PM

groups (DOT) com

Subject: Re: [ ] Re: Question about Disability

Thankyou Tracey, I have never know anyone with CML or even heard of it for

that matter, and yes I have not settled in as far as diagnosis and Gleevec,

but had noticed one of the side effects of the medication was lower red and

hbg counts, I hope that won't be the case, and I agree that time will be an

indicative factor for both. I am becoming more educated by the day about

something I previously knew nothing about. Thank you again for your response

and information, dx Aug. 2009

____________ _________ _________ __

From: traceyincanada <traceyincanada@ <mailto:traceyincan ada%40. com>

>

groups (DOT) <mailto:% 40groups. com> com

Sent: Fri, October 2, 2009 12:19:07 PM

Subject: [ ] Re: Question about Disability

Hi ,

I'll let others chime in on the disability aspect as I know there are some

who have gone on it but I did want to say that if you can get your Hgb up to

normal levels, I don't doubt that you'll feel a whole lot better and with

tons more energy.

I think most of the people with CML live fairly " normal " lives which is to

say they continue to work and live as they did before they got CML but there

are some who have difficulty with side effects and are not able to. Only

time will tell which category you'll fit into but please give yourself some

time to adjust to the diagnosis and treatment. I think you'll be pleasantly

surprised to see how much better things can get.

Tracey

dx Jan 2002

>

> My name is ,after feeling steadily weaker over the last year, I went

to the doctor on Aug. 25th, the next day I was told that i had luekemia and

that I had to get to the hospital. Being without insurance I made the one

and a half hour drive to Corvallis, Oregon, I live in a small town on the

coast. The oncologist told me I had CML. I was put on hydroxuria and given

three pints of blood to bring me back up to 9.0 in hemo. and since have had

to go in for 2 units about every 12 days. Thru the program at Novartis, I

received a 30 day supply of gleevec, to day is my 2nd day on it, currently

no ill effects. I have filed for and just received medical support and food

stamps from Oregon. I have also applied for SS/DI, as I can't imagine being

able to go back to work in the next year, I am 51 and always in pretty good

health and shape, but this has weakened me to the point I have to nap and I

wear out trying to do everyday chores, My question is, is

> anyone considered disabled with CML, my Oncologist originally told me,

when I mentioned to him that I had was going to file SS/DI, that he may be

able to get me back to work in a couple of months, I worked construction,

and currently cant.t see it any time soon, altho I pumped gas the last

couple of months prior to being diagnosed, untill I couldn't do that either

because of lack of strength, I had to try to make some kind of money, there

is no cash assistance and Iam just wondering if others have experianced this

type of sittuation, thankyou,

>

>

>

>

>

[Guest guest]

Hi , thankyou for the information, and also to all who have comented on

this message. I have always enjoyed working, and have always been optimistic,and

I believe to not give up, and would rather be at work right now. I am doing

everything to the letter to try and get back and I believe I will. I had felt

bad for about a year, I thought I had pulled abdominal muscles, but it was my

spleen, it is reduced I'd guess 15% from the Hydria, but still pushing my navel

out, it is very enlarged, my doctor said largest spleen he'd seen. I have and

will find any suitible work as soon as I am able, I am improved over 5.8 hgb and

130,000 white, my heart was working like being on Pike's peek. I am getting

better, 3 days on Gleevec and definately hoping for the best.  Thankyou for

giving the benifit of a doubt and understanding the every day plight of trying

to pay bills and survive untill I can return to work, and if not in the

immediate future, then at least be

allowed on SS/DI to keep from joining the ranks of the Homeless, un till one

does get well enough to return to fulltime employment. I am just looking to

survive till one or the other occurs. Thanks Go Ducks!

________________________________

From: hey00nanc <ncogan@...>

Sent: Sat, October 3, 2009 1:15:53 PM

Subject: [ ] Re: Question about Disability

 

I am 51 and always in pretty good health and shape, but this has weakened me to

the point I have to nap and I wear out trying to do everyday chores, My

question is, is

> anyone considered disabled with CML, my Oncologist originally told me, when I

mentioned to him that I had was going to file SS/DI, that he may be able to get

me back to work in a couple of months, I worked construction, and currently

cant.t see it any time soon,

____________ _________ __

Hi ,

I am a neighbor of yours.....I live in Eugene, OR and was diagnosed with CML 11

years ago. My primary oncologist is in Portland at OHSU, but I also have a local

oncolgist in Eugene.

I would file right away for SS/DI because as others have said you do not know

how you will do with the drugs, etc. I am on Disability. Here is my history. I

previously worked as a physical therapist at the Uni of Oregon (go Ducks,

right?) When I was first diagnosed, I worked for a period of time, but I was

really fatigued.... .the drugs are different and better now. Then I was off work

doing an experimental treatment, for a total of 14 months (I think you get SS

Dis. after being off work for 6 months)..... .when Gleevec became available in a

trial, I went back to work after being on Gleevec for 6 weeks, but I only worked

1/2 time, again because of fatigue and anemia (the low red count). I worked 1/2

time for 4 years....... the retired early because I needed a new drug and they

re-instituted my SS Disability, which I continue on.

I think in Oregon it seems a bit easier to get qualified for SS Disability than

in some other states. Because you normally do physically demanding work

(construction) it is hard to say if you will be able to go back to that...or

maybe you will need some job retraining. My suggestions:

keep a daily diary of how you feel, what you see your limitation to be,

etc.......inc side effects

go to the Employment Office and apply for SS Dis in case you do end up needing

it

make sure that your doctor always knows what problems you are having that may

limit your work down the line, so that he can support you on this

I am not suggesting that you won't be able to work again, I am just saying that

you want to be prepared for whatever happens in the future and get the support

that you need. It might take some time to get stable with CML and your treatment

and get back to having energy. Getting healthy is your first job right now, so

line up any financial support that you can.

C.

[Guest guest]

Hi , thankyou for the additional information, and yes I did qualify for

O.H.P. because of my condition, have received my card for the drug plan, and it

does help keep the cost down. I also enrolled in the Gleevec program that

provides the drug, free of cost. This has all been very humbling and shows that

compassion still thrives in a troubled world. I was fortunate as well with a

wonderful social worker that arranged my fast track appointment to be enrolled

in the health plan, and my oncolgist's office gave me the number to call for

Gleevec. I have never been in a group before, other than tha U.S.Army in the mid

70's, this is an experiance I will never forget. Thankyou so much for all your

insite in areas of immediate interest to my getting better, I hope you are

progressing well, and life is good. My giant spleen does hurt and I have to be

carefull not to horseplay or fall, as it could rupture I am told. I think I'll

let the Ducks do the hitting

this week, as they win a scweaker against the bruins! Thank you C. your

coastal friend,

________________________________

From: hey00nanc <ncogan@...>

Sent: Sun, October 4, 2009 11:17:39 AM

Subject: [ ] Re: Question about Disability

 

Hi ,

I thought of another couple of bits of information for you. I think you

mentioned that you do not have health insurance. With your new diagnosis, you

should qualify for the Oregon Health Plan which provides for medical

care....maybe this has already been mentioned to you at your oncolgist's office.

There is also an Oregon Drug Plan to get medications cheaper in case you need

other drugs, but your Gleevec should be provided without cost if you are not

working. If getting the assistance that you need (and deserve) gets confusing,

you could ask to see a medical social worker who will know all the ins and outs.

When someone has a very enlarged spleen, it can take some time for this to

resolve, and for some people this is a source of some pain/discomfort.

I think with your good attitude you will do great....but also give yourself the

time to get your health back and get back on your feet.

PS the Ducks creamed the Wa. State Cougars yesterday... .but the real test is

next week vs UCLA

another Oregonian,

C.