Just+some+questions...

[Guest guest]

Hello Karyn,

I will agree with all of the other responders, we are all people who

have been there and understand what you are facing. I was diagnosed at

58, in 2003. I was a CPA and found it impossible to continue in that

pressure cooker, too much chance of really screwing up for a client. I

was lucky, I applied for SS Disability and received it with only a five

minute phone interview. I had big problems with the forms, they are set

up for accidents and disability causing incidents, not chronic illnesses.

Yes, there are income limits on " earned income. " Those continue until

you reach full Social Security age, this depends on your year of birth.

I know that stinks and I am continuing to lobby my congress people to

work on changes... I have made some suggestions and they sound interested.

I hope this paragraph starts a new thread. Fatigue is a BIG issue. I

know the oncs say that we are/are not anemic based upon our hemoglobin

levels... this is misleading, in a big way! I have two (2) types of

anemia that may or may not be related to the CML/Gleevec. 1 - Pernicious

Anemia, simply put, my body no longer can process the Vitamin B-12 found

in my food. Don't just go on the B-12 levels in your blood work, without

new B-12 the old supply can last for a long time... there is another

simple blood test that needs to be done to diagnose " pernicious anemia. "

2 - Iron deficiency anemia... rare in people who are not bleeding, e.g.

women with their periods. Both of these anemia's will drag your energy

levels way down. I get a B-12 shot every four weeks (for life) and take

oral supplements. I also take iron daily and have my doctor monitor it

regularly... too much is BAD for you.

I want to know how many other CMLers have either of these issues too? If

there are many of us it may be worthwhile to look into the question " is

it related to the Gleevec/CML? "

I also believe that regular, real exercise can help you feel better. It

is hard to get off your butt... but you have to do that for your quality

of life.

Troxel

dob 5/07/44

/10/03

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