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...
Hi all,
Just joined and thought I'd say hi *wave*
A bit of history. Was diagnosed with a macroprolactinoma about a year ago. It was a daddy at 45mm and had started taking up residence in my sinus cavity. I also had chronic headaches and failing eyesight. Prolactin level was over 14000 and testosterone way down.
After a week in hospital to make sure no CSF leaked and took my remaining brain cell with it, I started on 0.5mg of cabergoline/week.
A year on and matters have changed somewhat for the better. Prolactin levels came down to 1500, eyesight was 20/20 again and no headaches. I was put on testosterone replacement which made me feel a lot better but my prolactin has since shot back up to 4000.
Don't know if this is because of the testo *shrug*
I have tolerated the cabergoline well but am now on 4mg/week and starting to buckle a bit. Bad headaches and falling asleep at work (good thing the boss is hardly around hehe)
I think that the docs will keep upping the meds to try and break through the glass ceiling before attempting surgery or radiotherapy. The caber is working, it just needs some extra oomph!
Well, I've rambled on enough. Looking forward to a sharing experience with the group. Take care.
gee
Just joined and thought I'd say hi *wave*
A bit of history. Was diagnosed with a macroprolactinoma about a year ago. It was a daddy at 45mm and had started taking up residence in my sinus cavity. I also had chronic headaches and failing eyesight. Prolactin level was over 14000 and testosterone way down.
After a week in hospital to make sure no CSF leaked and took my remaining brain cell with it, I started on 0.5mg of cabergoline/week.
A year on and matters have changed somewhat for the better. Prolactin levels came down to 1500, eyesight was 20/20 again and no headaches. I was put on testosterone replacement which made me feel a lot better but my prolactin has since shot back up to 4000.
Don't know if this is because of the testo *shrug*
I have tolerated the cabergoline well but am now on 4mg/week and starting to buckle a bit. Bad headaches and falling asleep at work (good thing the boss is hardly around hehe)
I think that the docs will keep upping the meds to try and break through the glass ceiling before attempting surgery or radiotherapy. The caber is working, it just needs some extra oomph!
Well, I've rambled on enough. Looking forward to a sharing experience with the group. Take care.
gee
That was def. a huge tumor. I can't give personal experience on the medications because I decided to opt for the surgery. Trying to avoid life long medications... because of my age and I'm also wanting to conceive(and I don't want to pollute my body with drugs) When I found out about my tumor, the physician didn't even tell me surgery was an option. I found out through research and found a very good neurosurgeon myself. Mine is small (unlike yours) so I have a 80-90% chance of being cured through surgery. I sure do hope that you find relief soon. My surgery is in 11 days and I'm freaking out! It's non invasive but I'm still worried. I wish the very best for you.
Geewhiz, good luck and welcome. Keep up the good progress you are making. As someone who has had this tumor for 10 years, it really is a marathon, not a sprint. Adjusting to the meds and changing things up is sometimes part of the deal. Welcome to the group! I've found this to be incredibly helpful!!
Well, just back from a night in hospital. The tumour started bleeding which lead to some galloping headaches. Been given cortisone to combat the bleeding and am now waiting to see if the docs decide to go down the surgery route. The tumour is still huge, so just taking it easy atm and keeping an eye out for any changes to sight or csf leakage. My, how things can change quickly.
I'll keep ya posted :D
Take care.