Re: SSDI & cognitive impairment

April 15, 2007

Kathy, I will be 62 in May and I also was turned down. I could apply for

early SS retirement, but it's a large difference in benefits and I can

qualify for Medicare in 24 months instead of waiting until I'm 66. I

consulted an attorney who encouraged me to handle my own appeal before

hiring him. He gave me an overview of what they were looking for plus

encouraged me to have my doctor write up something to go with the appeal.

When I got my records from the doctor, I realized that SS requests medical

records and instead of asking specific questions of the doctors, they ask

the doctor if there was any specific reason I could not work. My doctor did

not submit anything but a copy of the records. The attorney also says, the

2 things they're looking for is 1-have you been disabled 12 months or more;

2-is your life expectancy 12 months or less. He stated that people

reviewing the first application are not medical trained people and probably

know nothing about this cancer. He also stressed to use the whole word and

not CML. In my letter they referred to it as CNL, so I knew they had no idea

what kind of cancer this was. I was denied because it stated that my side

effects were controlled by my treatment and therefore I should be able to

work. In my appeal, I went into graphic description about all my side

affects. I stated also that the treatment caused the side effects therefore

causing the disability. I tried to give them an idea of my day that would

support the fact I could hold out to do a 8 hour a day job. I wrote a 1

page appeal and referred to it in the forms they require you to complete in

an appeal. I'm still working on a business that will allow me to schedule

work around my limitations and will gladly give up my disability check if I

make over the limit. I haven't received a response, but will keep you

posted. Let me know if you get additional advice.

Barbara Hundley

My Personal Assistant

Fayetteville, GA

Tel: 678-817-6805

Fax: 678-884-8186

<http://www.my-personal-assist.com> www.my-personal-assist.com

_____

From: [mailto: ] On Behalf Of

kathydf47

Sent: Sunday, April 15, 2007 6:30 AM

Subject: [ ] SSDI & cognitive impairment

Good morning,

I applied for SSDI due to cognitive impairment and fatigue, and I've

just been denied. I scored poorly on the cognitive testing, but

apparently not poorly enough to satisfy them.

I'm appalled by this. If SSDI is not for a 60 year old woman with

severe side effects due to Gleevec therapy for leukemia, who is it for?

I know that many of you have been approved for SSDI -- and some have

been approved due to these same side effects -- so I'm asking for

help. Any suggestions for my reconsideration phase of the the appeal?

Do any of you know of any data to support cognitive impairment from

gleevec therapy? I'm told SS likes data. I've found data re chemo

brain in general, but nothing specific to gleevec.

Thanks for any help/suggestions.

peace,

Kathy

April 15, 2007

Hi Kathy,

I'm sorry you were denied the SSDI. I have tried in the past to

locate articles that showed the cognitive effects of Gleevec but like

you, I wasn't very successful. Everything I found was general

about " chemo brain " . There wasn't anything specific to Gleevec.

To further the obstacle, there are numerous articles out there

showing that Gleevec can't pass the blood brain barrier so it's hard

to argue cognitive effects of a drug that doesn't even reach the

brain but we know from all the list members who complain of the exact

same side effects that this impairment is indeed real, even if we

can't find any articles to support it.

The cognitive effects and the hormonal effects that we see sooooo

many people complaining about, don't seem to get any attention by the

researchers at all which I find frustrating.

It's been a while since I've done a search though, so I'll try again

to see if I can find anything and I'll let you know. In the mean

time, I wish you luck with your case.

Take care,

Tracey

>

> Good morning,

>

> I applied for SSDI due to cognitive impairment and fatigue, and I've

> just been denied. I scored poorly on the cognitive testing, but

> apparently not poorly enough to satisfy them.

>

> I'm appalled by this. If SSDI is not for a 60 year old woman with

> severe side effects due to Gleevec therapy for leukemia, who is it

for?

>

> I know that many of you have been approved for SSDI -- and some have

> been approved due to these same side effects -- so I'm asking for

> help. Any suggestions for my reconsideration phase of the the

appeal?

>

> Do any of you know of any data to support cognitive impairment from

> gleevec therapy? I'm told SS likes data. I've found data re

chemo

> brain in general, but nothing specific to gleevec.

>

> Thanks for any help/suggestions.

>

> peace,

> Kathy

>

April 15, 2007

Thanks for your reply, Barbara. You've given me some good input.

It's quite a flawed and inconsistent system, eh? Why do some get

through it so effortlessly, and others of us struggle? And I love

that the first go round is looked at by non-medical employees.

Your doctor sounds similar to mine. And my oncologist did not put

any mention of my side effects in my records. None. When I

questioned him about this he said he liked to put a positive spin on

things. Well, I said, as a cancer survivor I think that's just

fabulous in life -- however, in medical records, how about you record

the truth?

I've asked my oncologist for a strong letter of support at the

suggestion of an attorney. I feel he owes me this.

Social Security insisted that I take a cognitive impairment test --

and although I scored poorly, the facts that I know the similarity of

a banana and an apple, can spell 'world' frontwards and backwards, and

know what day it is, make me able to work. It's really quite funny

in a disturbing sort of way.

Good luck with your appeal, and please do keep me posted. I'll do

the same.

peace,

Kathy

>

> Kathy, I will be 62 in May and I also was turned down. I could

apply for

> early SS retirement, but it's a large difference in benefits and I can

> qualify for Medicare in 24 months instead of waiting until I'm 66. I

> consulted an attorney who encouraged me to handle my own appeal before

> hiring him. He gave me an overview of what they were looking for plus

> encouraged me to have my doctor write up something to go with the

appeal.

> When I got my records from the doctor, I realized that SS requests

medical

> records and instead of asking specific questions of the doctors,

they ask

> the doctor if there was any specific reason I could not work. My

doctor did

> not submit anything but a copy of the records. The attorney also

says, the

> 2 things they're looking for is 1-have you been disabled 12 months

or more;

> 2-is your life expectancy 12 months or less. He stated that people

> reviewing the first application are not medical trained people and

probably

> know nothing about this cancer. He also stressed to use the whole

word and

> not CML. In my letter they referred to it as CNL, so I knew they had

no idea

> what kind of cancer this was. I was denied because it stated that

my side

> effects were controlled by my treatment and therefore I should be

able to

> work. In my appeal, I went into graphic description about all my side

> affects. I stated also that the treatment caused the side effects

therefore

> causing the disability. I tried to give them an idea of my day that

would

> support the fact I could hold out to do a 8 hour a day job. I wrote a 1

> page appeal and referred to it in the forms they require you to

complete in

> an appeal. I'm still working on a business that will allow me to

schedule

> work around my limitations and will gladly give up my disability

check if I

> make over the limit. I haven't received a response, but will keep you

> posted. Let me know if you get additional advice.

>

> Barbara Hundley

>

> My Personal Assistant

>

> Fayetteville, GA

>

> Tel: 678-817-6805

>

> Fax: 678-884-8186

>

> <http://www.my-personal-assist.com> www.my-personal-assist.com

>

> _____

>

> From: [mailto: ] On Behalf Of

> kathydf47

> Sent: Sunday, April 15, 2007 6:30 AM

>

> Subject: [ ] SSDI & cognitive impairment

>

> Good morning,

>

> I applied for SSDI due to cognitive impairment and fatigue, and I've

> just been denied. I scored poorly on the cognitive testing, but

> apparently not poorly enough to satisfy them.

>

> I'm appalled by this. If SSDI is not for a 60 year old woman with

> severe side effects due to Gleevec therapy for leukemia, who is it for?

>

> I know that many of you have been approved for SSDI -- and some have

> been approved due to these same side effects -- so I'm asking for

> help. Any suggestions for my reconsideration phase of the the appeal?

>

> Do any of you know of any data to support cognitive impairment from

> gleevec therapy? I'm told SS likes data. I've found data re chemo

> brain in general, but nothing specific to gleevec.

>

> Thanks for any help/suggestions.

>

> peace,

> Kathy

>

April 15, 2007

Hi Tracey -- thanks for your reply and for doing another search. If

you find anything promising, let me know.

peace,

Kathy

> >

> > Good morning,

> >

> > I applied for SSDI due to cognitive impairment and fatigue, and I've

> > just been denied. I scored poorly on the cognitive testing, but

> > apparently not poorly enough to satisfy them.

> >

> > I'm appalled by this. If SSDI is not for a 60 year old woman with

> > severe side effects due to Gleevec therapy for leukemia, who is it

> for?

> >

> > I know that many of you have been approved for SSDI -- and some have

> > been approved due to these same side effects -- so I'm asking for

> > help. Any suggestions for my reconsideration phase of the the

> appeal?

> >

> > Do any of you know of any data to support cognitive impairment from

> > gleevec therapy? I'm told SS likes data. I've found data re

> chemo

> > brain in general, but nothing specific to gleevec.

> >

> > Thanks for any help/suggestions.

> >

> > peace,

> > Kathy

> >

>

April 15, 2007

Hey all:

It has been a while since I have written. I went ahead with my BMT and tomorrow

will be 60 days post transplant. Can't say it is an easy road. But I am doing

well, on schedule with where I should be. The BCR/ABL came back neg. last week.

They did a Chimerism test, this test checks the white cell count for the donor

cells. My myloid counts were 100% donor and the lymphoid counts were 54% donor

cells. So the cells are doing their thing and coming in. It was a MUD

transplant. I know I have a long way to go.

I also am trying to crack the SSDI Nut. I had to apply by my caregiver running

the paperwork to the social security office, I did paperwork on line, and also a

phone interview. I was told to qualify you had to be off work at least a year

and one day. Also was told I had a 5 month wait period. My disability started

in Feb. so I was told it would be proactive to the Feb. off date. I live in

Atlanta and the caseworker said the paperwork will be sent to a team of doctors

that review it in Stone Mountain, GA. and I should have an answer in 8 weeks.

I don't know if it will be a different response being as I am in the process of

the transplant instead of on a maintenance medication. I don't envy you, I have

been there, Gleevec was not a picnic. Would I have liked to stay in remission

and on the Gleevec, probably. Sprycel was not the answer either. I am hoping

for the best with the BMT and plan to survive and thrive. Unfortunately I

probably will be off the full year. I would rather go back to work than be on

SSDI but I decided that I would rather take the chance to be healthy again,

without the Gleevec or Sprycel. I am seeing people at my clinic that get

healthy again, it's encourging.

Good luck to all and I'll let you know how the BMT comes along and my results

with the social security application.

Therese Stone

kathydf47 <kathydf47@...> wrote: Good

morning,

I applied for SSDI due to cognitive impairment and fatigue, and I've

just been denied. I scored poorly on the cognitive testing, but

apparently not poorly enough to satisfy them.

I'm appalled by this. If SSDI is not for a 60 year old woman with

severe side effects due to Gleevec therapy for leukemia, who is it for?

I know that many of you have been approved for SSDI -- and some have

been approved due to these same side effects -- so I'm asking for

help. Any suggestions for my reconsideration phase of the the appeal?

Do any of you know of any data to support cognitive impairment from

gleevec therapy? I'm told SS likes data. I've found data re chemo

brain in general, but nothing specific to gleevec.

Thanks for any help/suggestions.

peace,

Kathy

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

April 17, 2007

> there are numerous articles out there showing that Gleevec can't pass the

> blood brain barrier so it's hard to argue cognitive effects of a drug that

> doesn't even reach the brain but we know from all the list members who

> complain of the exact same side effects that this impairment is indeed real,

> even if we can't find any articles to support it.

Hi Kathy and Tracey,

When I first started IM I was relieved to hear that it didn't cross the

blood brain barrier (BBB), assuming it would therefore have no central

nervous system effects. Since I'm definitely sleepier and somewhat fuzzier-

headed when I'm on the drug compared to when I'm off it, I've though a lot

(when I felt able to do so!) about that reasoning, and have concluded that

it's bogus: drugs that don't cross into the brain can still interfere with

its functioning by altering the metabolism of other substances that do cross

the BBB. For example magnesium (Mg++) , an electrolyte which readily crosses

the BBB and which effects energy and alertness, is found to be low in many

patients - though, granted, it is excessive Mg++, rather than too little,

which is associated with lassitude. I'm unaware of IM-induced changes in

other commonly measured blood chemistries, but there are many chemicals in

the blood that we don't routinely monitor; even minor changes in some of

these could effect brain functioning over time.

Cheers,

R

April 17, 2007

Dear ,

I found your post very interesting. I'm not a doctor, chemist or

biologist, so I'm not qualified to evaluate the BBB arguments, but

your post makes sense to me.

Like Kathy, with whom I've corresponded a bit, I've experienced

definite cognitive side effects -- memory loss, impaired

focus/concentration. (To all who've heard my story a bazillion

times, my apologies. No wisecracks, Matt.) In this regard, I note

that Novartis' Gleevec insert lists memory loss as a potential side

effect -- it's listed as either " rare " or " unusual, " or something

like that, but Novartis certainly acknowledges it.

Anyway, thanks for your post.

Warm regards.

>

> > there are numerous articles out there showing that Gleevec can't

pass the

> > blood brain barrier so it's hard to argue cognitive effects of a

drug that

> > doesn't even reach the brain but we know from all the list

members who

> > complain of the exact same side effects that this impairment is

indeed real,

> > even if we can't find any articles to support it.

>

> Hi Kathy and Tracey,

>

> When I first started IM I was relieved to hear that it didn't

cross the

> blood brain barrier (BBB), assuming it would therefore have no

central

> nervous system effects. Since I'm definitely sleepier and

somewhat fuzzier-

> headed when I'm on the drug compared to when I'm off it, I've

though a lot

> (when I felt able to do so!) about that reasoning, and have

concluded that

> it's bogus: drugs that don't cross into the brain can still

interfere with

> its functioning by altering the metabolism of other substances

that do cross

> the BBB. For example magnesium (Mg++) , an electrolyte which

readily crosses

> the BBB and which effects energy and alertness, is found to be low

in many

> patients - though, granted, it is excessive Mg++, rather than too

little,

> which is associated with lassitude. I'm unaware of IM-induced

changes in

> other commonly measured blood chemistries, but there are many

chemicals in

> the blood that we don't routinely monitor; even minor changes in

some of

> these could effect brain functioning over time.

>

> Cheers,

>

> R

>

April 17, 2007

No wisecracks from me. I have forgotten who you are already.

For me, I find that my memory is more like swiss cheese. I either remember

it completely, or have no recollection. Someone will come up to me and thank

me for something I said to them, but I will have no memory of speaking with

them at all. However, if I do remember, I will remember just about every

detail of the conversation. It is disconcerting sometimes.

Sincerely,

Matt

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

In a message dated 4/16/2007 11:03:44 P.M. Eastern Standard Time,

deh12@... writes:

Dear ,

I found your post very interesting. I'm not a doctor, chemist or

biologist, so I'm not qualified to evaluate the BBB arguments, but

your post makes sense to me.

Like Kathy, with whom I've corresponded a bit, I've experienced

definite cognitive side effects -- memory loss, impaired

focus/concentrationfocus/concentration<WBR>. (To all who've heard m

times, my apologies. No wisecracks, Matt.) In this regard, I note

that Novartis' Gleevec insert lists memory loss as a potential side

effect -- it's listed as either " rare " or " unusual, " or something

like that, but Novartis certainly acknowledges it.

Anyway, thanks for your post.

Warm regards.

>

> > there are numerous articles out there showing that Gleevec can't

pass the

> > blood brain barrier so it's hard to argue cognitive effects of a

drug that

> > doesn't even reach the brain but we know from all the list

members who

> > complain of the exact same side effects that this impairment is

indeed real,

> > even if we can't find any articles to support it.

>

> Hi Kathy and Tracey,

>

> When I first started IM I was relieved to hear that it didn't

cross the

> blood brain barrier (BBB), assuming it would therefore have no

central

> nervous system effects. Since I'm definitely sleepier and

somewhat fuzzier-

> headed when I'm on the drug compared to when I'm off it, I've

though a lot

> (when I felt able to do so!) about that reasoning, and have

concluded that

> it's bogus: drugs that don't cross into the brain can still

interfere with

> its functioning by altering the metabolism of other substances

that do cross

> the BBB. For example magnesium (Mg++) , an electrolyte which

readily crosses

> the BBB and which effects energy and alertness, is found to be low

in many

> patients - though, granted, it is excessive Mg++, rather than too

little,

> which is associated with lassitude. I'm unaware of IM-induced

changes in

> other commonly measured blood chemistries, but there are many

chemicals in

> the blood that we don't routinely monitor; even minor changes in

some of

> these could effect brain functioning over time.

>

> Cheers,

>

> R

>

************************************** See what's free at http://www.aol.com.

April 17, 2007

I have to agree with Matt.

My memory sucks! But I can remember some things that happened 30-40

years ago.

My wife will be saying something and when I ask about it she tells me

she told me about in the past few days!

I always had a good memory, being a salesman for over 30 years that

was almost a requisite.

Now I get very frustrated when I can't remember something. I think it

really effects my short term memory much more than the long term, of

course I might not be remembering that right. 8-)

Terry

Mount Pearl

Newfoundland

Canada

Dx Oct. 2003

Started Gleevec Feb. 2004

> >

> > > there are numerous articles out there showing that Gleevec can't

> pass the

> > > blood brain barrier so it's hard to argue cognitive effects of a

> drug that

> > > doesn't even reach the brain but we know from all the list

> members who

> > > complain of the exact same side effects that this impairment is

> indeed real,

> > > even if we can't find any articles to support it.

> >

> > Hi Kathy and Tracey,

> >

> > When I first started IM I was relieved to hear that it didn't

> cross the

> > blood brain barrier (BBB), assuming it would therefore have no

> central

> > nervous system effects. Since I'm definitely sleepier and

> somewhat fuzzier-

> > headed when I'm on the drug compared to when I'm off it, I've

> though a lot

> > (when I felt able to do so!) about that reasoning, and have

> concluded that

> > it's bogus: drugs that don't cross into the brain can still

> interfere with

> > its functioning by altering the metabolism of other substances

> that do cross

> > the BBB. For example magnesium (Mg++) , an electrolyte which

> readily crosses

> > the BBB and which effects energy and alertness, is found to be low

> in many

> > patients - though, granted, it is excessive Mg++, rather than too

> little,

> > which is associated with lassitude. I'm unaware of IM-induced

> changes in

> > other commonly measured blood chemistries, but there are many

> chemicals in

> > the blood that we don't routinely monitor; even minor changes in

> some of

> > these could effect brain functioning over time.

> >

> > Cheers,

> >

> > R

> >

>

> ************************************** See what's free at

http://www.aol.com.

>

April 17, 2007

Hey Therese,

I will be thinking of you and hoping you continue to do well post-transplant!

:}

Re: [ ] SSDI & cognitive impairment

Hey all:

It has been a while since I have written. I went ahead with my BMT and tomorrow

will be 60 days post transplant. Can't say it is an easy road. But I am doing

well, on schedule with where I should be. The BCR/ABL came back neg. last week.

They did a Chimerism test, this test checks the white cell count for the donor

cells. My myloid counts were 100% donor and the lymphoid counts were 54% donor

cells. So the cells are doing their thing and coming in. It was a MUD

transplant. I know I have a long way to go.

I also am trying to crack the SSDI Nut. I had to apply by my caregiver running

the paperwork to the social security office, I did paperwork on line, and also a

phone interview. I was told to qualify you had to be off work at least a year

and one day. Also was told I had a 5 month wait period. My disability started in

Feb. so I was told it would be proactive to the Feb. off date. I live in Atlanta

and the caseworker said the paperwork will be sent to a team of doctors that

review it in Stone Mountain, GA. and I should have an answer in 8 weeks.

I don't know if it will be a different response being as I am in the process of

the transplant instead of on a maintenance medication. I don't envy you, I have

been there, Gleevec was not a picnic. Would I have liked to stay in remission

and on the Gleevec, probably. Sprycel was not the answer either. I am hoping for

the best with the BMT and plan to survive and thrive. Unfortunately I probably

will be off the full year. I would rather go back to work than be on SSDI but I

decided that I would rather take the chance to be healthy again, without the

Gleevec or Sprycel. I am seeing people at my clinic that get healthy again, it's

encourging.

Good luck to all and I'll let you know how the BMT comes along and my results

with the social security application.

Therese Stone

kathydf47 <kathydf47 (DOT) com> wrote: Good morning,

I applied for SSDI due to cognitive impairment and fatigue, and I've

just been denied. I scored poorly on the cognitive testing, but

apparently not poorly enough to satisfy them.

I'm appalled by this. If SSDI is not for a 60 year old woman with

severe side effects due to Gleevec therapy for leukemia, who is it for?

I know that many of you have been approved for SSDI -- and some have

been approved due to these same side effects -- so I'm asking for

help. Any suggestions for my reconsideration phase of the the appeal?

Do any of you know of any data to support cognitive impairment from

gleevec therapy? I'm told SS likes data. I've found data re chemo

brain in general, but nothing specific to gleevec.

Thanks for any help/suggestions.

peace,

Kathy

------------ --------- --------- ---

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

April 17, 2007

Kathy,

I'm not sure if it's true but I heard that it's nearly impossible to get SSDI

for CML without hiring a lawyer. Sad but true.

:{

[ ] SSDI & cognitive impairment

Good morning,

I applied for SSDI due to cognitive impairment and fatigue, and I've

just been denied. I scored poorly on the cognitive testing, but

apparently not poorly enough to satisfy them.

I'm appalled by this. If SSDI is not for a 60 year old woman with

severe side effects due to Gleevec therapy for leukemia, who is it for?

I know that many of you have been approved for SSDI -- and some have

been approved due to these same side effects -- so I'm asking for

help. Any suggestions for my reconsideration phase of the the appeal?

Do any of you know of any data to support cognitive impairment from

gleevec therapy? I'm told SS likes data. I've found data re chemo

brain in general, but nothing specific to gleevec.

Thanks for any help/suggestions.

peace,

Kathy

April 17, 2007

:

Thanks for the good thoughts! I'll update as it goes on. I finally have the

energy to use my e-mail.

Regards,

Therese

" lunaemica@... " <lunaemica@...> wrote: