Pituitary Adenoma - Folks who have beaten it.

I am appealing to those who have lived with a pituitary adenoma or has
successfully had one removed.



On the evening of July 4th I went to a hospital ER after suffering from
headaches on and off and I was diagnosed as having a 2.5 cm pituitary
adenoma. So imagine my state of mind. During my short stay in the hospital
I was given blood tests and a full eye exam, all of which I passed
successfully. Also I am a type 2 diabetic.



I was given 0.5 grams of Cabergolin to take twice per week. I will be
re-evaluated in 6 months with another MRI. My endocrinologist at
Northwestern Memorial in Chicago tells me that if Cabergolin is not
successful in shrinking the tumor another medication which will be required
to be taken daily will be prescribed. If that is unsuccessful then surgery
will be suggested.



My endocrinologist tells me that statistics show that cancerous pituitary
adenomas are rare. I was also advised that I will be on medication for
life.



After 6 weeks of Cabergolin I see no improvement in my symptoms.



I am looking for some advice/support/whatever from those who have had this
condition and would like to hear your stories.



Thank You and God Bless

Rick wrote:

> I am appealing to those who have lived with a pituitary adenoma or has
> successfully had one removed.
>
> On the evening of July 4th I went to a hospital ER after suffering from
> headaches on and off and I was diagnosed as having a 2.5 cm pituitary
> adenoma. So imagine my state of mind. During my short stay in the hospital
> I was given blood tests and a full eye exam, all of which I passed
> successfully. Also I am a type 2 diabetic.
>
> I was given 0.5 grams of Cabergolin to take twice per week. I will be
> re-evaluated in 6 months with another MRI. My endocrinologist at
> Northwestern Memorial in Chicago tells me that if Cabergolin is not
> successful in shrinking the tumor another medication which will be required
> to be taken daily will be prescribed. If that is unsuccessful then surgery
> will be suggested.
>
> My endocrinologist tells me that statistics show that cancerous pituitary
> adenomas are rare. I was also advised that I will be on medication for
> life.
>
> After 6 weeks of Cabergolin I see no improvement in my symptoms.
>
> I am looking for some advice/support/whatever from those who have had this
> condition and would like to hear your stories.

Hello Rick.
Apparently as much as 20% of the general population may harbor these benign
tumors and die with them, not of them and 30% of patients 50-60 years of age
have clinically undetected tumors.

If you passed the blood and eye tests, what are you taking the Cabergoline for?
Cabergoline is a drug used to treat benign tumours or cancers which cause the
body to produce too much of a hormone called prolactin. I think I've seen a
woman, on another newsgroup, who produces too much breast milk, but I don't
think she takes anything for that.

It does not say anything about reducing the size of the tumor here
http://www.stjohn.org/HealthInfoLib/...le.aspx?26,687 nor here
3 page Adobe Acrobat file
<
http://www.bccancer.bc.ca/NR/rdonlyr...ut_21Nov06.pdf
>
I think it's also used for Parkinson's and sleep disorders.
So my question is what problems is the tumor causing you?
J

I was told the Cabergolin would shrink the tumor.

My symptoms are headaches, sometimes day long, but more specifically I began
to notice that after lying on my back (such as working underneath an auto) I
got very dizzy and nauseous. This began in February of this year.

I simply was hoping to hear from success stories and I appreciate any/all
information.

It wasn't a dark and stormy night when Rick wrote:

I actually spotted this post when I was searching for old posts of
mine regarding my pituitary adenoma...

> I am appealing to those who have lived with a pituitary adenoma
> or has successfully had one removed.

I've got one, just a small one which is responding well to Dostinex
(cabergoline).

> On the evening of July 4th I went to a hospital ER after
> suffering from headaches on and off and I was diagnosed as
> having a 2.5 cm pituitary adenoma. So imagine my state of mind.
> During my short stay in the hospital I was given blood tests
> and a full eye exam, all of which I passed successfully. Also I
> am a type 2 diabetic.

Um yeah, it's a shock... the doc who told me waved at her head
indicating an area, said she thought I had a tumour and that I'd
get an MRI in a month. I went home that day thinking I had some
kind of cancer in my brain. :-/ Some docs really know how to make a
person worry!

> I was given 0.5 grams of Cabergolin to take twice per week. I
> will be re-evaluated in 6 months with another MRI. My
> endocrinologist at Northwestern Memorial in Chicago tells me
> that if Cabergolin is not successful in shrinking the tumor
> another medication which will be required to be taken daily will
> be prescribed. If that is unsuccessful then surgery will be
> suggested.

Right, I'm guessing you mean 0.5mg? Now what my doc did was
prescribe bromocriptine (Parlodel) and retest prolactin levels one
or two months later to see how I was responding... and my
prolactinoma is like, tiny. The bromocriptine didn't work so well
*for me* but the cabergoline (Dostinex) works so well that I've
reduced my dose to half a 0.25mg tablet per week.

Your doc can raise the dosage of Dostinex by 0.25mg per week up to
2mg (that's 2x 1mg) but should, IMO, be checking your levels around
now (and perhaps every 2 months) to see how you're doing: the 6
month checkups are for when you're at a working, stable dose.

> My endocrinologist tells me that statistics show that cancerous
> pituitary adenomas are rare. I was also advised that I will be
> on medication for life.

Well, I've not come across anyone with a malignant pituitary
adenoma yet but I've come across a few who were able to quit the
meds. I may soon be one of them but I'm not very concerned: this is
one of the best meds I've ever needed to take and can live with
life long medication.

> After 6 weeks of Cabergolin I see no improvement in my symptoms.

Call your doc and ask for the blood tests to be redone, it's
possible you can't tell that it's helping when your levels are
returning to normal. Which hormones are affected for you?

> I am looking for some advice/support/whatever from those who
> have had this condition and would like to hear your stories.

I've just tried a Google search but can't find the support group
anymore, I *think* it was on either MSN or Yahoo. Aha!
http://groups.msn.com/PituitaryTumor/
http://groups.msn.com/PituitaryChat/

Possibly the best advice I can give you is to *please* not assume
you'll need surgery (I know someone with a pit. tumour around the
same size as yours who didn't), don't read about the surgery unless
you know you'll be having it... just focus on getting your meds
sorted out, ok?

Take care and be well, you can email me if you have questions but
those two groups probably have better answers. ;-)

It wasn't a dark and stormy night when J wrote:

> If you passed the blood and eye tests, what are you taking the
> Cabergoline for? Cabergoline is a drug used to treat benign
> tumours or cancers which cause the body to produce too much of a
> hormone called prolactin. I think I've seen a woman, on another
> newsgroup, who produces too much breast milk, but I don't think
> she takes anything for that.

I think the doctor was possibly not very clear in explaining: the
larger pituitary adenomas can cause visual problems with the growth
pushing where it is and the blood tests are for prolactin, growth
hormone and I think something else. Possibly also thyroid since
they're at it, my endo does that. Not sure how the blood tests
would be passed.

Lactating and not taking meds? I remember doing that before I
realised it could be treated. Supermarkets are much easier to deal
with when you don't have to worry about meeting hungry infants to
set off lactation.

> It does not say anything about reducing the size of the tumor
> here

My endo said it would but doesn't do regular MRIs to check, he
judges the size of the growth by the prolactin levels which might
not be the best way but so long as I don't get headaches or visual
problems I can live with it.

A funny: a neurologist did a full brain MRI *without* contrast and
claimed my 4mm pituitary adenoma was gone, they'd had to do an MRI
of the pituitary gland with contrast to find the damned thing in
the first place, LOL!

Rick wrote:

> I was told the Cabergolin would shrink the tumor.
>
> My symptoms are headaches, sometimes day long, but more specifically I began
> to notice that after lying on my back (such as working underneath an auto) I
> got very dizzy and nauseous. This began in February of this year.
>
> I simply was hoping to hear from success stories and I appreciate any/all
> information.

I was about to tell you about Vasti, Judy n and Nicholas Anthony (who had
surgery who seems to have lingering problems from the surgery), but here's
Vashti now.
My concern is you're not having the problems that Vashti's having and your blood
levels are, according to you) fine.
So I'm not sure if it shrinks tumors or not.
One of those links was from the BC Cancer Agency.
Let's see what Steph says about the shrinking part.
Vashti's seems smaller than yours but functionning (causing problems)...I'm not
sure yours is.

If Steph's around, his replies are often early afternoon.
If Steph does not comment, then you might as well take it to the MSN groups and
continue there, I guess.

Best of luck.
J

Vashti wrote:

> It wasn't a dark and stormy night when Rick wrote:
>
> I actually spotted this post when I was searching for old posts of
> mine regarding my pituitary adenoma...

I was searching you all out while you were searching on the tumor. lol

> > I am appealing to those who have lived with a pituitary adenoma
> > or has successfully had one removed.
>
> I've got one, just a small one which is responding well to Dostinex
> (cabergoline).

"Responding" as in less lactation?

Thanks for the MSN Groups - archived now, in case others are looking for.
J

It wasn't a dark and stormy night when J wrote:

> Vashti wrote:
>
>> It wasn't a dark and stormy night when Rick wrote:
>>
>> I actually spotted this post when I was searching for old posts
>> of mine regarding my pituitary adenoma...
>
> I was searching you all out while you were searching on the
> tumor. lol

Ah, so you are the "J" that I remember? I did wonder.<g>

>> > I am appealing to those who have lived with a pituitary
>> > adenoma or has successfully had one removed.
>>
>> I've got one, just a small one which is responding well to
>> Dostinex (cabergoline).
>
> "Responding" as in less lactation?

No lactation (yay!), wet t-shirts just isn't "me" IYKWIM. Also 30kg
(and counting) of weight lost without other alterations in
lifestyle which sent the endo off doing loads more blood tests
cause he says prolactinomas don't cause weight gain (he's Wrong<g>)
plus my crabby moods got a whole lot better till I quit smoking...
but the post-smoking moodiness will pass.

Lower prolactin levels... far lower but I can't find my numbers or
what measurement was used. Went from 1300 to 13 IIRC but I think
most measure prolactin according to a different scale or something?

Bromocriptine was prescribed first as it's cheaper but often people
respond better to carbergoline, my little "friend" barely responded
to the bromocriptine but others prefer it.

Recently there's been some question regarding long-term safety of
ergot derived dopamine agonists in parkinsons patients but as they
use higher doses I'm not going to start worrying about that.

> Thanks for the MSN Groups - archived now, in case others are
> looking for. J

Thanks J! Every time I google pituitary tumours or prolactinomas I
find someone has recently asked for info somewhere, usually I'd
reply by email if it's off topic for the group as here but Rick
wasn't using a valid addy. Still - now others doing a groups search
may come across those groups.

I got some good info on *one* of those groups but can't recall
which but it looks like some of the same people use both. Some of
the people there have more than "just" prolactin levels raised so
people reading should stick to the bits that apply to them so as
not to scare themselves needlessly like I'm apt to do.<g>

It wasn't a dark and stormy night when J wrote:

> Vashti's seems smaller than yours but functionning (causing
> problems)...I'm not sure yours is.

I think in men it's more often the size that causes the problems as
they're detected later than in women: women start lactating, have
periods go all wacky or even completely missing (you'd think we'd
rejoice but the hot flashes and mood problems don't compensate, IOW
we're never happy<g>)... in men the first symptom with a
prolactinoma would be lower libido and sadly many won't see their
doc for that. Or not until the headaches or visual problems start.
:-(

Also sometimes doctors will attribute the lowered libido to
depression or something without really checking it out as a
"proper" physical symptom.

Vashti wrote:

> It wasn't a dark and stormy night when J wrote:
>
> > Vashti wrote:
> >
> >> It wasn't a dark and stormy night when Rick wrote:
> >>
> >> I actually spotted this post when I was searching for old posts
> >> of mine regarding my pituitary adenoma...
> >
> > I was searching you all out while you were searching on the
> > tumor. lol
>
> Ah, so you are the "J" that I remember? I did wonder.<g>

I'm sorry. This is awful to say but I don't remember you.
I do remember seeing your name somewhere because I like it.
What I meant is I was searching out people who had recently posted about
that type of tumor and your name came up. It looked familiar. I might
have seen you on crossposts to (or from) sci.med or
misc.health.alternative

> >> > I am appealing to those who have lived with a pituitary
> >> > adenoma or has successfully had one removed.
> >>
> >> I've got one, just a small one which is responding well to
> >> Dostinex (cabergoline).
> >
> > "Responding" as in less lactation?
>
> No lactation (yay!), wet t-shirts just isn't "me" IYKWIM. Also 30kg
> (and counting) of weight lost without other alterations in
> lifestyle which sent the endo off doing loads more blood tests
> cause he says prolactinomas don't cause weight gain (he's Wrong<g>)
> plus my crabby moods got a whole lot better till I quit smoking...
> but the post-smoking moodiness will pass.
> [...]
>
> I got some good info on *one* of those groups but can't recall
> which but it looks like some of the same people use both. Some of
> the people there have more than "just" prolactin levels raised so
> people reading should stick to the bits that apply to them so as
> not to scare themselves needlessly like I'm apt to do.<g>

Well said about "sticking to the bits that apply to each of them".

Thanks for explaining about the male side of things.

I see that Steph hasn't posted. I was going to ask him about RT, but maybe
it's not used unless there's bleeding. <conjecture>

I'm pleased to read that things are working out for you.
Good luck with the stop smoking endeavour.
Best of health to you both and thanks again for the MSN groups and your
input, Vashti.
J