Prolactinoma Support Group

A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...

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bugsy76 05/21/2013

So my Endo wants me off cabergoline, because she feels my tumor is now stabilized at 0.4 cm. Her theory is since my prolactin levels are normal, according to my blood work, the cells in the tumor will no longer secrete prolactin. I thought if there's a tumor, there's is a chance of the boogie man coming out to play. Anyways bouts to set an appointment at Sweedish for a second opinion.

Much love,

Peace!

deleted_user 05/21/2013

How long have you been on cabergoline and how long has your prolactin been normal?

bugsy76 05/21/2013

I've been taking cabergoline bout 2yrs. Guess levels been in a acceptable range after about a month in a half of popping the cabby-cabs.

orangejuice 05/21/2013

Ideally that is what is supposed to happen. The drug hardens the outside of the tumor so it can't secrete prolactin anymore.

Good luck with your second opinion!

crystals83 05/21/2013

Oooooooo, I don't know man. I thought that once you have stabilized numbers you have to stay on the same dose. If you come off the meds won't your prolactin go up and the tumor grow? I mean since it's only been stabilized for a short time?

crystals83 05/21/2013

BWAHAHAHAHAHA-Cabby Cabs.........Clever!!!!!

deleted_user 05/21/2013

This drug has a long half-life. I've heard 5 years minimum on these things.

I've also heard that tumors die as well. Who knows? You can try it and keep an eye on it....go back on it if the numbers come up.

deleted_user 05/26/2013

Here in the UK the general opinion is that 3 years on any one of the drugs that keeps prolactin down is enough to make a permanent cure.

I.E. Keep the level down for 3 years artificially and it will stay down permanently. Tests seem to show this works for about 70% of patients.

After 3 years, normal practice is to stop the drug.

deleted_user 05/27/2013

Congrats dude, that seems like good news :) did you have the crazy cab side effects the whole time you were on it?

bugsy76 05/28/2013

Man my brain was so fizzed, the Cabby-cabs felt like another passenger on the mental roller coaster of symptoms. Honestly I felt weird at night mostly right before going to sleep. One thing is for sure the dizzy spells is starting to get more intense lately. Almost thought I was going to black-out at one point.

deleted_user 05/28/2013

I struggle with postural hypotension...when I squat down to work on something, or pick something up, I get very light headed.

deleted_user 06/06/2013

Oh ya, those cabby cabs are a BIG passenger on the prolactinoma rollercoaster that we're all on!! I too get very dizzy (goes in phases) & have almost blacked out. Glad you're getting a second opinion - very smart! I would think if the tumor's still there it can grow. Let us know what you find out :)

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