Re: Octreotide

[Guest guest]

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I have been on octreotide for 14 months now. Before I was on it, I was in

the hospital the last five years with attacks every 3 - 4 months and the last

episode put me on TPN for three months. In the 14 months since I strarted

octreotide, I have had ONE attack. It lasted five days and I was back at work

two

days after got out of the hospital. I am an asst. principal of a large high

school (1800+ students) so you can see I have a busy STRESSFUL job (but i LOVE

it), plus a husband and three kids (the youngest is 18 and a sr.). I went

through planning a big wedding for my daughter this past year from AZ - the

wedding was held in IN, in our home town. SO, I have had a normal, stressful

year

and still have done well.

I have not had any pain meds in over a year. I do watch my diet closely, and

exercise (eliptical machine, free weights, and pilates) nearly every day (at

least two of the three for 20 mins. each.)

I feel very fortunate to have been so healthy. The only big change I have

had is a sphincteronomy/stents in Dec 2002 and starting Octreotide the same

month. I have panc divisum and CP.

This is such a strangely unique disease. Why one person gets uncontrollable

pain and are totally disabled, while someone like me is doing extremely well,

is a mystery. PLUS, we can have good times and then some REALLY bad times...

We are always waiting for the other foot to fall.

I get SO TIRED of people at work asking me how I am feeling and watching me

to see if I am going to double over in pain - even though I have not been sick

in nearly a YEAR!!! I certainly think this disease has put the " glass

ceiling " over my head again, as far as promotions because the bosses are all

SURE I

will get sick again and then I would need to be replaced!!! I am happy in my

job, so it isn't that big of deal - except I feel discriminated against due to

this disease. I should have the RIGHT to say whether I want a promotion or

not, and givien the opportunity regardless of my " condition. " Since I went on

FMLA ONCE, they assume I may not be employable... yada, yada, yada.

WEll, I guess I have rambled enough.

Back to the octreotide issue. Everyone responds differently. I know of

several people on it that are doing just fine, but others have had BAD side

effects, or no benefit at all... another medical wonder why it helps some and

not

others...

My local GI dr. has three patients on it, and i am doing the best, by far...

BUT I also have the least severe case, am active and positive in my living.

(I also dr. with Dr. Lehman at IU Med Ctr, and I dont' know how many patients

he has on it or how they are doing).

Others can post their experiences.

Cecilia

AZ rep.

Cecilia