Re: Just some questions...

[Guest guest]

Hi Karyn I,m retired with CML I need a 2 hour nap at noon,have no idea you do 50

hr week. What  know about Disability our daughter got it after several visit to

SS.Ever 2 years she has to resubmit all old and new stuff to stay in SS. She of

course is to Young for Medicare. When qualified you get Medicare ,of course

prescriptions is extremely important.  dx 12 /23/04 600 Gleevec

Good luck

________________________________

From: Karyn <karynt@...>

Sent: Sat, March 27, 2010 3:16:01 PM

Subject: [ ] Just some questions...

 

Hello my fellow CMLers Ive been on Gleevec since 7/08 and reached PCRU 5/09.

I've had some physical side effects GI, muscle cramps, cuts and bruises and

fatigue are the main ones. Emotionally im a mess, depressed, foggy brain and I'm

finding it harder and harder to function in a high stress job 50+ hours a week.

My bloodwork just shows my rbc and hemoglobin and lymphocytes slightly low and

now my neutrophil% slightly high. My hemotologist thinks everything is fine

based on the blood work which is all he sees and is interested in. Im very

frustrated and dont know if i need to change hemotologists or what to do. Has

anyone had experience with Social Security Disability? Come Nov 10 im able to

retire with a small pension but not enough to live on so im wondering if

Disability is an option? I welcome your comments and advice. Thanks

Karyn

[Guest guest]

Hi Karyn,

I was on SSD for 5 years, but now I am back to work and my income is over the

limit by a couple hundred dollars which really stinks. Can't afford to quit my

job but can't afford to work either. I continue to work for several reasons: it

gets me out of bed in the morning, it gives me a purpose to face the day, and

feel like I live a " normal " life. Tiredness has always been an issue for me too.

At the end of the day, it takes all I can to get ready for bed. Working 50

hours a week is unthinkable for me! My week is only 35 hours.

As far as your feelings of depression and foggy brain, those are real,

especially for Gleevec patients. I was on Gleevec for 21 months, 12 which were

with a combo drug. Anti depressants helped me through it so don't be afraid to

talk to a social worker or dr about this. The drugs we take kill some good

hormones(serontonine - I think that's what they're called ) too and the anti

depressants help to replace them. Anyway that's what I was advised.

Others on the list will chime in because a majority of us have been where you

are, or still are. Stay hopeful and keep Faith in God. He will get you through

it.

Blessings,

Jackie S.

dx 4/14/04

currently Ariad Ap24534

________________________________

From: Karyn <karynt@...>

Sent: Sat, March 27, 2010 3:16:01 PM

Subject: [ ] Just some questions...

Hello my fellow CMLers Ive been on Gleevec since 7/08 and reached PCRU 5/09.

I've had some physical side effects GI, muscle cramps, cuts and bruises and

fatigue are the main ones. Emotionally im a mess, depressed, foggy brain and I'm

finding it harder and harder to function in a high stress job 50+ hours a week.

My bloodwork just shows my rbc and hemoglobin and lymphocytes slightly low and

now my neutrophil% slightly high. My hemotologist thinks everything is fine

based on the blood work which is all he sees and is interested in. Im very

frustrated and dont know if i need to change hemotologists or what to do. Has

anyone had experience with Social Security Disability? Come Nov 10 im able to

retire with a small pension but not enough to live on so im wondering if

Disability is an option? I welcome your comments and advice. Thanks

Karyn

[Guest guest]

Gleevec can drastically mitigate the effects of anti-depressants and does so

in about 20 percent of people who take both -- so says the nurse

practitioner who leads my LLS support group. It was night and day when I

moved from Gleevec to Sprycel in terms of that. I still grapple with " the

silver fog " though, forgetting the most obvious things -- like what I was

about to say next. Or the names of things I use every day. I am probably

going to move onto Tasigna soon and I'm told one does not feel so tired on

that, but I have accepted I will likely never return to my energetic,

pre-CML life.

If you are on disability, are you allowed to work at all? What is the limit?

On Sat, Mar 27, 2010 at 6:40 PM, jackie schneider

<jschneider008@...>wrote:

>

>

> Hi Karyn,

> I was on SSD for 5 years, but now I am back to work and my income is over

> the limit by a couple hundred dollars which really stinks. Can't afford to

> quit my job but can't afford to work either. I continue to work for several

> reasons: it gets me out of bed in the morning, it gives me a purpose to face

> the day, and feel like I live a " normal " life. Tiredness has always been an

> issue for me too. At the end of the day, it takes all I can to get ready for

> bed. Working 50 hours a week is unthinkable for me! My week is only 35

> hours.

>

> As far as your feelings of depression and foggy brain, those are real,

> especially for Gleevec patients. I was on Gleevec for 21 months, 12 which

> were with a combo drug. Anti depressants helped me through it so don't be

> afraid to talk to a social worker or dr about this. The drugs we take kill

> some good hormones(serontonine - I think that's what they're called ) too

> and the anti depressants help to replace them. Anyway that's what I was

> advised.

>

> Others on the list will chime in because a majority of us have been where

> you are, or still are. Stay hopeful and keep Faith in God. He will get you

> through it.

>

> Blessings,

> Jackie S.

> dx 4/14/04

> currently Ariad Ap24534

>

>

> ________________________________

> From: Karyn <karynt@... <karynt%40pacbell.net>>

> <%40>

> Sent: Sat, March 27, 2010 3:16:01 PM

> Subject: [ ] Just some questions...

>

> Hello my fellow CMLers Ive been on Gleevec since 7/08 and reached PCRU

> 5/09. I've had some physical side effects GI, muscle cramps, cuts and

> bruises and fatigue are the main ones. Emotionally im a mess, depressed,

> foggy brain and I'm finding it harder and harder to function in a high

> stress job 50+ hours a week. My bloodwork just shows my rbc and hemoglobin

> and lymphocytes slightly low and now my neutrophil% slightly high. My

> hemotologist thinks everything is fine based on the blood work which is all

> he sees and is interested in. Im very frustrated and dont know if i need to

> change hemotologists or what to do. Has anyone had experience with Social

> Security Disability? Come Nov 10 im able to retire with a small pension but

> not enough to live on so im wondering if Disability is an option? I welcome

> your comments and advice. Thanks

>

> Karyn

>

>

[Guest guest]

Hi ,

Yes, you can work but the income limit here in Iowa is $900.00/month or so. It's

a wonderful service that helped me through some tough financial times. There

were some months that I was over the limit but still received benefits, so I am

required to repay that amount. It will take me a few years, but they don't

charge interest, which is good.

Other states are probably different. I'm not sure.

Jackie S.

________________________________

From: Rosen Lum <rrosenlum@...>

Sent: Sat, March 27, 2010 8:50:51 PM

Subject: Re: [ ] Just some questions...

Gleevec can drastically mitigate the effects of anti-depressants and does so

in about 20 percent of people who take both -- so says the nurse

practitioner who leads my LLS support group. It was night and day when I

moved from Gleevec to Sprycel in terms of that. I still grapple with " the

silver fog " though, forgetting the most obvious things -- like what I was

about to say next. Or the names of things I use every day. I am probably

going to move onto Tasigna soon and I'm told one does not feel so tired on

that, but I have accepted I will likely never return to my energetic,

pre-CML life.

If you are on disability, are you allowed to work at all? What is the limit?

On Sat, Mar 27, 2010 at 6:40 PM, jackie schneider

<jschneider008@...>wrote:

>

>

> Hi Karyn,

> I was on SSD for 5 years, but now I am back to work and my income is over

> the limit by a couple hundred dollars which really stinks. Can't afford to

> quit my job but can't afford to work either. I continue to work for several

> reasons: it gets me out of bed in the morning, it gives me a purpose to face

> the day, and feel like I live a " normal " life. Tiredness has always been an

> issue for me too. At the end of the day, it takes all I can to get ready for

> bed. Working 50 hours a week is unthinkable for me! My week is only 35

> hours.

>

> As far as your feelings of depression and foggy brain, those are real,

> especially for Gleevec patients. I was on Gleevec for 21 months, 12 which

> were with a combo drug. Anti depressants helped me through it so don't be

> afraid to talk to a social worker or dr about this. The drugs we take kill

> some good hormones(serontonine - I think that's what they're called ) too

> and the anti depressants help to replace them. Anyway that's what I was

> advised.

>

> Others on the list will chime in because a majority of us have been where

> you are, or still are. Stay hopeful and keep Faith in God. He will get you

> through it.

>

> Blessings,

> Jackie S.

> dx 4/14/04

> currently Ariad Ap24534

>

>

> ________________________________

> From: Karyn <karynt@... <karynt%40pacbell.net>>

> <%40>

> Sent: Sat, March 27, 2010 3:16:01 PM

> Subject: [ ] Just some questions...

>

> Hello my fellow CMLers Ive been on Gleevec since 7/08 and reached PCRU

> 5/09. I've had some physical side effects GI, muscle cramps, cuts and

> bruises and fatigue are the main ones. Emotionally im a mess, depressed,

> foggy brain and I'm finding it harder and harder to function in a high

> stress job 50+ hours a week. My bloodwork just shows my rbc and hemoglobin

> and lymphocytes slightly low and now my neutrophil% slightly high. My

> hemotologist thinks everything is fine based on the blood work which is all

> he sees and is interested in. Im very frustrated and dont know if i need to

> change hemotologists or what to do. Has anyone had experience with Social

> Security Disability? Come Nov 10 im able to retire with a small pension but

> not enough to live on so im wondering if Disability is an option? I welcome

> your comments and advice. Thanks

>

> Karyn

>

>

[Guest guest]

Hi Karyn: This question pops up quite often, and everyone' circumstances are

different. I was diagnosed in 1998, and I could not tolerate the Interferon

combination Ara-C. I tryed to work another 4 months, but I could not do it

anymore. The side effects interfered with my job performance. I worked in the

medical field, and could not afford to make mistakes with patient information

etc.

I went on SSD, and then got into the clinical trial for the Gleevec. The

side effects were numerous, and I just stayed on my SSD as I had no choice. I

have days where I know I would have had to call out of work. Today was one of

those days. I do not know what I did, but apparently did not eat enough when I

took my Gleevec. I had terrible nausea. Then I developed other problems as I

got older.

The fatigue and muscle and joint pain just never seems to leave either. Part of

mine is bad Arthritis too.

As for doctors, you have to be your own advocate for your care.

I am going to be switching doctors next month after I get my latest blood work.

My Oncologist retired, and no warning or anything. I then was told that the

doctor who took over for him would be my new Oncologist/hematologist. I gave it

a chance, and there was just no connection between the two of us to make me feel

confident in having him to care for me.

Just think it all through, and you will make the right decision.

The other thing regarding finances is that its not easy, but we do have my SS

and my husbands paycheck. My husband is going to be going out on Disability for

surgery, and I will make it work.

Hope some of this helped you.

A.

>

> Hello my fellow CMLers Ive been on Gleevec since 7/08 and reached PCRU

5/09. I've had some physical side effects GI, muscle cramps, cuts and bruises

and fatigue are the main ones. Emotionally im a mess, depressed, foggy brain and

I'm finding it harder and harder to function in a high stress job 50+ hours a

week. My bloodwork just shows my rbc and hemoglobin and lymphocytes slightly low

and now my neutrophil% slightly high. My hemotologist thinks everything is fine

based on the blood work which is all he sees and is interested in. Im very

frustrated and dont know if i need to change hemotologists or what to do. Has

anyone had experience with Social Security Disability? Come Nov 10 im able to

retire with a small pension but not enough to live on so im wondering if

Disability is an option? I welcome your comments and advice. Thanks

>

> Karyn

>

[Guest guest]

So that's $900 in addition to disability?

On Sat, Mar 27, 2010 at 7:45 PM, jackie schneider

<jschneider008@...>wrote:

>

>

> Hi ,

> Yes, you can work but the income limit here in Iowa is $900.00/month or so.

> It's a wonderful service that helped me through some tough financial times.

> There were some months that I was over the limit but still received

> benefits, so I am required to repay that amount. It will take me a few

> years, but they don't charge interest, which is good.

>

> Other states are probably different. I'm not sure.

>

> Jackie S.

>

> ________________________________

> From: Rosen Lum <rrosenlum@... <rrosenlum%40gmail.com>>

> <%40>

> Sent: Sat, March 27, 2010 8:50:51 PM

> Subject: Re: [ ] Just some questions...

>

>

> Gleevec can drastically mitigate the effects of anti-depressants and does

> so

> in about 20 percent of people who take both -- so says the nurse

> practitioner who leads my LLS support group. It was night and day when I

> moved from Gleevec to Sprycel in terms of that. I still grapple with " the

> silver fog " though, forgetting the most obvious things -- like what I was

> about to say next. Or the names of things I use every day. I am probably

> going to move onto Tasigna soon and I'm told one does not feel so tired on

> that, but I have accepted I will likely never return to my energetic,

> pre-CML life.

>

> If you are on disability, are you allowed to work at all? What is the

> limit?

>

> On Sat, Mar 27, 2010 at 6:40 PM, jackie schneider

> <jschneider008@... <jschneider008%40>>wrote:

>

> >

> >

> > Hi Karyn,

> > I was on SSD for 5 years, but now I am back to work and my income is over

> > the limit by a couple hundred dollars which really stinks. Can't afford

> to

> > quit my job but can't afford to work either. I continue to work for

> several

> > reasons: it gets me out of bed in the morning, it gives me a purpose to

> face

> > the day, and feel like I live a " normal " life. Tiredness has always been

> an

> > issue for me too. At the end of the day, it takes all I can to get ready

> for

> > bed. Working 50 hours a week is unthinkable for me! My week is only 35

> > hours.

> >

> > As far as your feelings of depression and foggy brain, those are real,

> > especially for Gleevec patients. I was on Gleevec for 21 months, 12 which

> > were with a combo drug. Anti depressants helped me through it so don't be

> > afraid to talk to a social worker or dr about this. The drugs we take

> kill

> > some good hormones(serontonine - I think that's what they're called )

> too

> > and the anti depressants help to replace them. Anyway that's what I was

> > advised.

> >

> > Others on the list will chime in because a majority of us have been where

> > you are, or still are. Stay hopeful and keep Faith in God. He will get

> you

> > through it.

> >

> > Blessings,

> > Jackie S.

> > dx 4/14/04

> > currently Ariad Ap24534

> >

> >

> > ________________________________

> > From: Karyn <karynt@... <karynt%40pacbell.net> <karynt%

> 40pacbell.net>>

> > <%40> <%

> 40>

>

> > Sent: Sat, March 27, 2010 3:16:01 PM

> > Subject: [ ] Just some questions...

> >

> > Hello my fellow CMLers Ive been on Gleevec since 7/08 and reached PCRU

> > 5/09. I've had some physical side effects GI, muscle cramps, cuts and

> > bruises and fatigue are the main ones. Emotionally im a mess, depressed,

> > foggy brain and I'm finding it harder and harder to function in a high

> > stress job 50+ hours a week. My bloodwork just shows my rbc and

> hemoglobin

> > and lymphocytes slightly low and now my neutrophil% slightly high. My

> > hemotologist thinks everything is fine based on the blood work which is

> all

> > he sees and is interested in. Im very frustrated and dont know if i need

> to

> > change hemotologists or what to do. Has anyone had experience with Social

> > Security Disability? Come Nov 10 im able to retire with a small pension

> but

> > not enough to live on so im wondering if Disability is an option? I

> welcome

> > your comments and advice. Thanks

> >

> > Karyn

> >

> >

[Guest guest]

Yes. If your income stays below the allowed income, you will receive SSD plus

your monthly income. I could find a job that doesn't pay as much as my current

job and continue SSD, but by working in the school system as a teacher associate

I get the summer's off. And that is what keeps me going knowing that I will have

the summers off, unpaid of course. I know employees that ask for the wages to be

decreased just to stay within the guidelines so they can continue receiving SSD.

I haven't taken that step, and not sure if I will.

Hope this answers your question. If not, please let me know.

Jackie S.

________________________________

From: Rosen Lum <rrosenlum@...>

Sent: Sat, March 27, 2010 9:59:19 PM

Subject: Re: [ ] Just some questions...

So that's $900 in addition to disability?

On Sat, Mar 27, 2010 at 7:45 PM, jackie schneider

<jschneider008@...>wrote:

>

>

> Hi ,

> Yes, you can work but the income limit here in Iowa is $900.00/month or so.

> It's a wonderful service that helped me through some tough financial times.

> There were some months that I was over the limit but still received

> benefits, so I am required to repay that amount. It will take me a few

> years, but they don't charge interest, which is good.

>

> Other states are probably different. I'm not sure.

>

> Jackie S.

>

> ________________________________

> From: Rosen Lum <rrosenlum@... <rrosenlum%40gmail.com>>

> <%40>

> Sent: Sat, March 27, 2010 8:50:51 PM

> Subject: Re: [ ] Just some questions...

>

>

> Gleevec can drastically mitigate the effects of anti-depressants and does

> so

> in about 20 percent of people who take both -- so says the nurse

> practitioner who leads my LLS support group. It was night and day when I

> moved from Gleevec to Sprycel in terms of that. I still grapple with " the

> silver fog " though, forgetting the most obvious things -- like what I was

> about to say next. Or the names of things I use every day. I am probably

> going to move onto Tasigna soon and I'm told one does not feel so tired on

> that, but I have accepted I will likely never return to my energetic,

> pre-CML life.

>

> If you are on disability, are you allowed to work at all? What is the

> limit?

>

> On Sat, Mar 27, 2010 at 6:40 PM, jackie schneider

> <jschneider008@... <jschneider008%40>>wrote:

>

> >

> >

> > Hi Karyn,

> > I was on SSD for 5 years, but now I am back to work and my income is over

> > the limit by a couple hundred dollars which really stinks. Can't afford

> to

> > quit my job but can't afford to work either. I continue to work for

> several

> > reasons: it gets me out of bed in the morning, it gives me a purpose to

> face

> > the day, and feel like I live a " normal " life. Tiredness has always been

> an

> > issue for me too. At the end of the day, it takes all I can to get ready

> for

> > bed. Working 50 hours a week is unthinkable for me! My week is only 35

> > hours.

> >

> > As far as your feelings of depression and foggy brain, those are real,

> > especially for Gleevec patients. I was on Gleevec for 21 months, 12 which

> > were with a combo drug. Anti depressants helped me through it so don't be

> > afraid to talk to a social worker or dr about this. The drugs we take

> kill

> > some good hormones(serontonine - I think that's what they're called )

> too

> > and the anti depressants help to replace them. Anyway that's what I was

> > advised.

> >

> > Others on the list will chime in because a majority of us have been where

> > you are, or still are. Stay hopeful and keep Faith in God. He will get

> you

> > through it.

> >

> > Blessings,

> > Jackie S.

> > dx 4/14/04

> > currently Ariad Ap24534

> >

> >

> > ________________________________

> > From: Karyn <karynt@... <karynt%40pacbell.net> <karynt%

> 40pacbell.net>>

> > <%40> <%

> 40>

>

> > Sent: Sat, March 27, 2010 3:16:01 PM

> > Subject: [ ] Just some questions...

> >

> > Hello my fellow CMLers Ive been on Gleevec since 7/08 and reached PCRU

> > 5/09. I've had some physical side effects GI, muscle cramps, cuts and

> > bruises and fatigue are the main ones. Emotionally im a mess, depressed,

> > foggy brain and I'm finding it harder and harder to function in a high

> > stress job 50+ hours a week. My bloodwork just shows my rbc and

> hemoglobin

> > and lymphocytes slightly low and now my neutrophil% slightly high. My

> > hemotologist thinks everything is fine based on the blood work which is

> all

> > he sees and is interested in. Im very frustrated and dont know if i need

> to

> > change hemotologists or what to do. Has anyone had experience with Social

> > Security Disability? Come Nov 10 im able to retire with a small pension

> but

> > not enough to live on so im wondering if Disability is an option? I

> welcome

> > your comments and advice. Thanks

> >

> > Karyn

> >

> >

[Guest guest]

HI ,

I know what you mean about the 50+ hr a week job... I'm going through a similar

situation right now - but not ready to give up a job that I enjoy.

When I forget to watch my diet or forget to take my vitamins, I can really feel

the difference. Not sure if you take vitamins or not, but when I miss mine, my

job stress can take over and get the best of me.

B-vitamins are good for stress and energy, I'm eating activia as I write this -

it has really helped me with the GI problems from Gleevec. A good multi-vitamin

+ the above may give you a bit of relief. For cramps, calcium and potassium

helped me - but have your blood checked to see what might be low or a bit on the

low side.

What's your Gleevec dose?

I haven't had to go on disability since my interferon days, but try to keep that

work/life balance in perspective.

- gale

gleevec 400mgs since 6/01

[Guest guest]

I looked into SSD, but it would only pay out less than half of what I

currently earn. I got my doctor to change me over to Sprycel and it has been

infinitely better than Gleevec - less fatigue and much less brain fog. I'm

still not at 100%, but I am coming to accept I probably never will be again.

I know it's not healthy and whatnot, but I discovered tobacco clears the

brain fog temporarily. It seems to be the only thing I've found to help,

other than switching meds.

[ ] Just some questions...

Hello my fellow CMLers Ive been on Gleevec since 7/08 and reached PCRU

5/09. I've had some physical side effects GI, muscle cramps, cuts and

bruises and fatigue are the main ones. Emotionally im a mess, depressed,

foggy brain and I'm finding it harder and harder to function in a high

stress job 50+ hours a week. My bloodwork just shows my rbc and hemoglobin

and lymphocytes slightly low and now my neutrophil% slightly high. My

hemotologist thinks everything is fine based on the blood work which is all

he sees and is interested in. Im very frustrated and dont know if i need to

change hemotologists or what to do. Has anyone had experience with Social

Security Disability? Come Nov 10 im able to retire with a small pension but

not enough to live on so im wondering if Disability is an option? I welcome

your comments and advice. Thanks

Karyn

[Guest guest]

I find that Tasigna has brought me back to a normal person. Remember QOL is

important. At least it is to me at my young age of 67. Tasigna was a God

Send for me. I am normal-don't hardly know I have CML.

Hope it lasts!!!!!

Sharon T

_____

From: [mailto: ] On Behalf Of Neal

Sent: Monday, March 29, 2010 9:44 AM

Subject: RE: [ ] Just some questions...

I looked into SSD, but it would only pay out less than half of what I

currently earn. I got my doctor to change me over to Sprycel and it has been

infinitely better than Gleevec - less fatigue and much less brain fog. I'm

still not at 100%, but I am coming to accept I probably never will be again.

I know it's not healthy and whatnot, but I discovered tobacco clears the

brain fog temporarily. It seems to be the only thing I've found to help,

other than switching meds.

[ ] Just some questions...

Hello my fellow CMLers Ive been on Gleevec since 7/08 and reached PCRU

5/09. I've had some physical side effects GI, muscle cramps, cuts and

bruises and fatigue are the main ones. Emotionally im a mess, depressed,

foggy brain and I'm finding it harder and harder to function in a high

stress job 50+ hours a week. My bloodwork just shows my rbc and hemoglobin

and lymphocytes slightly low and now my neutrophil% slightly high. My

hemotologist thinks everything is fine based on the blood work which is all

he sees and is interested in. Im very frustrated and dont know if i need to

change hemotologists or what to do. Has anyone had experience with Social

Security Disability? Come Nov 10 im able to retire with a small pension but

not enough to live on so im wondering if Disability is an option? I welcome

your comments and advice. Thanks

Karyn