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...
I went to see a second Endocrinologist for a second opinion on my condition a few days ago. My tumor was small (4mm) when I first had my MRI back in August. Because of this, he said he didn't think I needed to be taking Dostinex twice a week--he said he would try me on one time a week and see how it affected my prolactin levels. He said he would take me off it entirely after two years because I am otherwise a healthy male. Has anyone had experience going off Dostinex? Did the tumor and symptoms return? I was led to believe by my other Endo that I would be on Dostinex for life.
Yes, I did go off and the symptoms did come back.
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
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.
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
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.
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.
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.
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.
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