Prolactinoma Support Group

I was told that once my levels where normal. That I was to stay on the dostinex for 3 to 5 years. At which time we would try going off and see if we had killed the tumor supple.

Yes, I did go off and the symptoms did come back.

I have a small prolactinoma and my endo put me on half a tab of Dostinex for the first few wks to see if that would affect the levels. I just had my blood work and I'm waiting to see if I need to go to a full dose once a wk.

Hi Juanitoc,
In my experiance, while I wasn't taken off dostinox, my dosage was reduced from 1mg a day to 0.5mg twice weekly. While the endo achieved his goal in terms of the levels of prolactin in my blood, the non secreting part of the tumour grew back from 1.8cm to 4.2cm with the result that I now live on morphine for the pain.
I am NOT a doctor but I do have a prolactinoma and I have spent 1000's of hours researching the subject. I am not medically qualified to advise you. If I were qualified to advise you, my advice would be to stay on dostinox.
Dostinox is used for patients with parkinsons disease with a typical dose of 3mg per day over long chronological periods. The bad side effect is that in some patients, there is fibrosis of the heart valves caused by the drug dopomine. Dopomine is the drug in Dostinox or cabergoline that we are interested in.
I would urge your endo to have regular heart scans where they can look for an enlarged heart. If they have not already done one, they should as it will give them a base line they can work from in the future.

Hope this helps.

Paul

P.S.

I am new to this forum. How do you join the prolactinoma support group? Do you join by just typing away or is there an official way of becoming a member?

Paul

Hi, Paul.

Not thinking of going off Dostinex--just wondering what might occur if my Endo takes me off it in a few years as he said I should.

4.2 cm sounds like a quite large tumor--shouldn't it be surgically removed? From what I understand, there are dangers of the tumor causing blindness or brain injury if it gets so large.

As for Parkinson's, my Endo said there's nothing to worry about for prolactinoma patients since we're at a much lower dosage. How would one know if one was having heart valve problems? Any symptoms?

To join the prolactinoma support group you just need to go to the support group page, click on prolactinoma, and then "join this group." That should be it.

Good luck with your situation.

Hi juanitoc,

In answer yo your question, The way they test for heart valve problems is normally through an echocardiogram. What they look for initially is an enlarged heart caused by the heart having to work harder. This situation can be reversable as in my case. I did at one stage have an enlarged heart but this turned out to be caused by blood clots on my lungs. Subsequent tests showed the heart size had returned to normal. The echocardiogram also shows the valves at work and a well trained technicion will be able to tell if the valves are working properly.

In the highly unlikely event that the valves are permeenantly damaged, heart valve replacement is practically routine today.

You are right when you say that a large tumour can cause other problems. Unfortunately, the medical profession in Ireland at least appears unable to recognise nor deal with these problems.

Myy case is a bit more unusual than most as due to a complaint against a palliative care consultant, I went untreated for a number of years. Thankfully, I had a sympathetic GP who told me to do my own research and he was prepared to prescribe whatever I asked for.

Hope this helps,

Yhank you for your reply,

Paul

I've seen about 3 dif endos and I got the impression from all that my prolactinoma was going to be something i'd have to deal with for life. After about 6 years of treatment, I chose to stop taking my meds this past winter and so far my symptoms haven't returned. I hear that syptoms could return in about a year or so tho, so I will continue to monitor my prolactin levels. I will not take dostinex until my levels start to go up again, tho, so I'll enjoy that until it happens. ;-)

I am off of cabergoline/dostinex 3 months now. Im assuming that my levels havent gone up out of the normal range because as a female still get my menstual cycle.Usually when that stops its a signal that my levels ar high again. My endo had said that i'd be on it for a year and a half and than we'd see if the levels stayed down. If they didnt i'd go back on it again. My tumor was 2mm when first dicovered since then i havent had an mri. I was put on cabergoline 2x a week; half a pill. Really hope my levels dont go back up agian; we'll see but doing good so far.

My endo also gave me a decision to be on it or not since it wasnt big. She said i could sit and wait it out and deal with my menstaul cycle coming once every three months or i could go on med and bring it down every month and also possbily shrink the tumor. I went with the second option because i wanted my menstraul cycle to return to normal again. Also because i wanted to conceive.

Hope i didnt give to much info because ur a man. This was my experience hope it helps.

I was diagnosed at the age of 16, when my Prolactin level was 560. My doctors put me on Dostinex .5mg/2xweek. I began my period the month after. I was on Dostinex for 3 years, then the FDA came out with the warning that it causes heart problems. I went and got an echo and it showed that I had mild regergitation on 2 of my valves. I stopped Dostinex immediately. Within 2 years of not taking Dostinex my levels were elevated again (to the point where it was interfering with my body). Two weeks ago, I had an MRI and my tumor is up to 7mm again and my Prolactin level was at 70. My echo showed that things were fine. My Endo said that we are going to try .5mg/once every two weeks and see how that goes.
My body adjusted really well after I got off Dostinex, unfortunately my tumor came back and I have to begin treatment again. =\

One thing I'd like to add is that I think EVERYONE should get an Echocardiogram. I played sports in high school and remained active in college and I had NO idea about the heart-problems until AFTER I got the results from the Echo. So catch it now before it causes major damage.

It's debatable as to whether Dostinex/Cabergoline causes heart valve problems.

Personally, I think it can...particularly if you are in an overprescribed state.

These drugs are Ergot derivatives. They bind to the 5HT2B dopamine receptors in the body...regardless of where they are located.

This includes on the surface of the tumor/neoplasia. This is partly what causes the tumor to shrink or not grow.

The only thing worse than a small tumor is a large tumor. The condition of cancer is there, regardless of whether the tumor is present or not...thus, they regrow so much of the time after even successful surger.

The gonadotroph cells are the cell effected by this condition.

Tigerpaws: "the condition of cancer is there"--?? I was under the impression that prolactinomas are benign, so where does this cancer assessment come in?

lindsaykay: thanks for your thoughts. I'll definitely try to go in for an echocardiogram. Can I ask if you had any symptoms? I sometimes have heaviness in my heart and some fluttering, but it's hard to say if this is a result of overwork--I run a lot to keep my weight down.