ShallowJam- This is the only thread I could find on the world wide web as well. We're a small group apparently. Yours is the first I've heard of that's bigger than mine (4cm). But, the good news is that you caught it quick and had it diagnosed properly. That's quite a bit to be thankful for.

To answer your questions

1. I think everyone reacts differently to the Caber. I had headache prior to the meds (due to mass effect of the tumor) and it immediately went away after taking the Caber. Since yours is a monster, my guess is that it'll take some time to stabilize for you, be patient.

2. I've never heard of Caber "curing" the tumor completely. My endo has been persistent in telling me that I'll be on Caber for life ($$$$$), but he also told me I would probably need HRT, which he appears to have been wrong about :)

3. Like I said, mine was 4cm and has only shrunk marginally. My endo only checks once every two months, be glad you get to monitor yours more frequently.

I know exactly how you feel about bloodwork. This technology has been out for decades, so one would think we could spend 20$ to buy our own kit to check general blood results at Walgreen by now. But no, the doctors/insurance companies have this on lock down.

DavieG- I can pinpoint exactly where my tumor is and if it hurts, I know it's the tumor. Is this the case for you? Sometimes I'll get an extremely sharp pain right in the tumor area, but it goes away before I get worried about it.

Everyone- I've had good results with a herbal supplement from Premier Research Labs called Testosterone Complex. It contains a mixture of a bunch of herbs that supposedly work to increase your Testosterone. My T was flat lined until I started taking these. Also, dopamine seems to be the item we're really missing the most, there are a bunch of herbs and foods that work to increase that as well. St. Johns Wort, L-Tyrosine and Mucuna Pruriens seem to have a positive effect on me if nothing else. Quality multivitamins seem to help too.

I get headaches. got one so bad yesterday I was sent home from work. could not concentrait. Been on Cab since August. Headaches worse for last 2 weeks. Blood pressure was sky high at 190/117. I stopped it until my doc calls me.
And I feel the same way. That this has taken 8 yrs away from me. one 4th of my life at an age when I was supposed to be the most productive in my carear. Bummer!
Just keep trying!

hi all, i ve not long been diagnosed with macroprolactioma and ive been put on .5 cab once a week and it really kicks my ass i feel like ive had a kickin for two days after my pill,is this normal and will it go away ,heres hopin ...

truebiker, yes thats normal, and yes it will go away.
Symptoms last about 3-4 weeks with cabergoline, and then they'll go away, or reduce significantly. when I first started taking it it kicked my butt, but I am much better now no matter what day of the week it is

thanks shallowjam ,its bad enough having the damn thing without the medication making you actually feeling worse.

Hi guys,

Back from the endo with my 18 month report. The MRI shows the noma is 1/3rd it's original size. Prolactin level is 35 (down from the original 896): still high. Using androgel, testosterone level is 500. Libido is down from when I was on Cabergoline, but I don't get crazy. We are increasing the dose of the Bromo to 3 X 2.5mg per day.

Sick as a dog with a broncial infection this week. Back to bed now.

I was diaglosed with a 6cm by 6cm macroadenoma about 1.5 years ago now wrapped around carotid artery. Prolactin 15000 T-level less than 70. Now the tumor is half size, prolactin less than 5 and T-level above 600. Obviously I am a different person now and take 0.75mg cab once a week.. Tumor is no longer shrinking but not causing problems. The Cabergoline is an interesting drug and because its a dopamine agonist you have to watch out for compulsive behaviours (addictions of a kinds). Life will improve but keep talking and working through it all. I am going to start seeing a therapist related to coping with feelings related to the change and maybe the drug....

hello freeranger,I was diagnosed prolactinoma last March 2010 with 5cm macroadenoma and my prolactin level was 12000. I just want to know if you undergo transphenoidal surgery? Me, I had my surgery april 2010 unfortunately after surgery still 3.5 cm has been left to my head. So I started to take medication with cabergoline ,after a year of medication my tumor was shrink to 2 cm. Now my dosage is 1.5mg twice a week. I don't feel any side effect anymore. By August 2012 I have to undergo MRI again,I hope and pray that it will shrink again...

Hi Freeranger,
Therapy is good! Best move I ever made. I had been sick for at least 8 years undignosed. It messed me up.
Testosterone is so important. I stopped taking it to see if my body would make some on it's own. It did not. Free T was 2 as in (two). Total was 58.
I'm taking some wellbutrin for depression and back on the Testosterone and feel great.
Keep us posted.

Surgery was not an option for me...tumor wrapped around artery..

I just want to add my overall story in here. I really just found this support group for this type of tumor. When I was in 7th grade, I had my first of many migraines. The doctors all just said it was a migraine and really didnt do much. I started to have additional pains as well, such as quick piercing head pains that caused me to cry and not be able to move. The pain would then spread to one side of my head. To this day I cannot lay on my left side or really touch the left side of my head because of the ensuing burning hot pain. When I was in my late teens, I began to have vision problems. The migraines and other pain and the vision problems continued when I left for college. While there, I went to the free clinic and they would give me some medicines but nothing really worked. I had to drop out of school because of my vision problems. I would see double and/or split vision. When I would read, I could never focus on the same line. I couldnt drive because of the double vision. Heck, at times I was afraid of waiting by the side of the road for the bus because it would seem like the cars were coming towards me. I also developed narcoleptic issues. During most of this time I did not have health care. I finally found a job that I could have and pay for healthcare. By this time I was 22 years old. I went to an optometrist to check my eyes so I could see. He was the first to tell me that it wasnt my eyes but something else, possibly a tumor. He referred me to a nuero-ophthalmologist. The nuero-ophthalmologist did some tests and told me that I had severe bitemporal hemianopsia and it was caused by some type of tumor, possibly a craniopharyngioma. After my first MRi and visit to a neurosurgeon, it was confirmed that I did in fact have a tumor. Because of elevated prolactin hormone levels, it was finally diagnosed as a macroprolactinoma that was 48mm x 38mm x 29mm. I was immediately placed on 0.5mg 4 times per week to see if the tumor would rapidly shrink. Unfortunately, my tumor had a very large cystic portion. So I was scheduled for surgery on 3/24/06 but I had to postpone it because my uncle died and we had his funeral the next day. It wouldve been too hard for my mom to have to choose between me and her family. So I had the endoscopic transsphenoidal pituitary adenomectomy surgery on 3/29/06. Overall, it went pretty well. I had my vision back, which seemed miraculous. After my surgery life went on seemingly uneventfully. I was on Dostinex, Synthroid, Androgel, and Prednisone. Well, unfortunately, in June of 2007 I was laid off from my job and, thus, lost my health coverage. I was able to find a couple of jobs here and there, but none of them had health insurance. I could afford private health coverage but they would always place a rider on anything related to my tumor, which included my meds, most of my doctors visits, and my annual MRIs. I couldnt afford my meds, even with the discount cards. My meds would be over $500 per month. It wasnt until 2011 that I found a job that included health coverage. I had to wait 3 months for it to kick in. Also, by this time, some of my symptons had returned. My bitemporal hemianopsia returned, but not as much as the first time. I had started having migraines again. I could just sense that my tumor had returned. In May of 2011, I had my first MRI in 4 years. I also saw a new neurosurgeon and was advised that my tumor had in fact returned. It wasnt quite as large as the first tumor but it was still a macroprolactinoma. The surgery this time would be somewhat more difficult because of the scar tissue from my first surgery. I underwent my the surgery on 8/16/11. It was more than 24 hours before I awoke from anesthesia. I was in neurosciences intensive care for 5 days and in the hospital for a total of 8 days. I had more complications this time, including nasal issues and had to have a further debridement surgery. I also developed diabetes insipidus.

Man! You've really been through it.

The regrowth of these tumors is not unusual. I have a "hard" type tumor, so my tumor stays within it's boundaries pretty well.

I hesitate to have the surgery due to the complications you've listed.

Hi guys,

I am a 37 year old male.

I have been lurking around this forums from time to time, and felt it was time to make an introduction.

My symptoms started to appear several years ago including headaches, weight gains, drop in libido, etc.

When I started lactating... I finally called my doc.

At this point in time my Prolactin levels were in the 400 range.

A MRI in late 2010 revealed a Macroprolactinoma, 1.4 cm in size.

Since then, I have been on Cabergoline.

The Cabergoline initially made me drowsy, and the headaches were unreal with piercing eye pain and naseau.

I changed my diet, going primarily to raw greens and fruits, and eliminating most meats and diary. This helped in terms of side effects and I lost 30 pounds.

My macroprolactinoma was shrunk down to about 1 cm, after a year of Cabergoline treatment.

However, my Prolactin leveled off in the 70s and my Testosterone is on the low end of the range hovering around 370s.

In the last two weeks, my Endo has boosted my Cabergoline to .5 MG, three times a week.

I am not sure I can handle this dosage. The headaches are back, along with dizziness.

I think I read that TurtleMan splits his dosage in half and doubles the frequency of intake. I might try that.

At the moment, I am just frustrated... the idea of doing this forever is disheartening. I am still waiting to feel "normal" again and for my libido to return (as is my wife).

In read many of your stories - I feel like a baby even complaining.

With that said, I am glad to have found you guys, and appreciate all of the experiences you have all courageously shared.

My endo upped my dosage three times, and each time my symptoms returned for a short period until my body got used to it. Right now im on 1mg 3 times a week. How long have you been on this dosage regimen. For me it usually takes about two weeks for the side effects to lessen. I still get headaches and diziness every now and then, but side effects are substantially reduced after that first break-in period. Goodluck.

ShallowJam,

Thank for the response.

This is the third or forth increase my Endo has prescribed.

Each time the headaches and drowsiness have increased for a few days.

This latest increase has kicked my butt. I'm on week two now, and will wait and see in the side effects wear off.

Speaking of side effects

Has anyone experienced extremely dry and irritated scalp as a result from taking Cabergoline?

I now have to shave my head about every two to four week, and my scalp will look reptilian, with little sores.