I can't speak on anyone else just my own experience. I am only being treated with drugs as my tumor is not visable on MRI yet. Everything points to my pituitary. Anyways I've only done the drug option. First cabergoline..then 3x a day sandostatin...then long lasting sandostatin lar from 10 to 20 to 30....to now at 30 mg of sandostatin plus 2x a week of cabergoline. I am not under complete control yet. I had two months of normal numbers (btw this has all only been since feb. 2012). I've talked to a specialist in SF and one in LA and both said sandostatin may shrink tumors. So maybe your situation can change. I was also told by both that they never have seen anyone cured just controlled, but that there is hope since people (like me) are being diagnosed earlier. Plus there are always new drugs. I personally was much worse a couple of years ago but feel better since then. But some days are still not good. I'm sorry you are now part of our unfortunate group, but know that you are not alone and things can get better :)

Im drug route it was my decision to go this way ..my reasons were ...my tumour was a macrodeoma and I also had very high bloodpressure and also had allergies..one nasty one where Id pass out and have hives and wake up with blue lips and a grey tone to my skin..At the time the drug available was somatuline autogel..I was given the smallest dose ..the downside was the sickness and the road runner of the D word..the good side was I had been having immense inward burning..I didnt know what it was like to feel cold..from the first dose suddenly I could feel cold..my levels were not dropping though so put onto second dose..this one side effects of hyperness but hey I would pull of some funy pranks I had to much energy not argueing with that one because before I couldnt keep awake..On this dose it didnt quite cover me and before next one due I had dark moods I felt as if I couldnt cope with smaller things ..but what was going on was the tumour was shrinking and I think my pit was trying to balance..got put on larger dose and then thats when I was pulling myself back together..allergies cleared up..bloodpressure stablized ..periods before which were horrendous and clotting and going on for weeks regulated and went light..I lost weight went from a 18 to a size 14.no skin tags..I looked healthy not a zombie wreck..my hands slimed down.my hair and nails didnt grow at a very fast rate anymore..levels were erractic but then dropped to very good..no aching omg did I use to ache my bones felt like I was on a medieaval torture rack.that stopped..the list was geting better and better..time scale from going from a zombie wreck I call myself that because I was..about four and a half years

I didnt put the tumour was near my optic nerve and I was seeing shadows kept thinking someone was at the side of me..my eyesight is now good dont need glasses so that was another bonus.

Thanks Jokey! I've so many posts on the great results others are having after surgery that I was scared I couldn't get better with medicine alone. It sounds like you have gotten great results. I appreciate your input.

My tumor was wrapped around my right internal carotid artery, too. The neurosurgeon spent as much time working there as he dared and left behind a few remnants. That meant I have had to take meds for a while, but I think the fact that they were octreotide based, which can help shrink tumors, coupled with the fact that there were only tiny amounts of remnants worked together in my favor so that now I have renewed hope in obtaining a biochemical cure.

Sorry to know that you have acromegaly, but glad that you have been diagnosed and are able to seek top notch care. Wishing the best for you.

Rose

We have very similar stories. I had a macroadenoma wrapped around my carotid artery. I went to the premier teaching school here in Oregon, and the neurosurgeon barely introduced himself before saying, "It's not operable. It's not near the optic nerve." At 54, with hopefully a lot more living to do, the thought of shooting up meds for the rest of my life was not acceptable, so I sought another opinion. It was through the second doctor that I learned why the first was reluctant:, and that was of course the carotid artery scenario. I had my tumor removed on December 18th. My doc got every bit of it. The carotid artery was nicked as it was apparently quite a "sticky" tumor, but the bleeding was stopped, and the only problem to deal with after the surgery was a CSF leak.

I guess it depends on your age, your quality of life, and your insurance coverage. My meds were going to cost $500 a month *after* insurance. I am not rich -- just the insurance premium alone is hard enough to come up with each month. My quality of life had deteriorated to the point that I really didn't care if I died on the table. Seriously. So, for me, it was a no brainer, and I was willing to take the risk.

My doctor was Dr, Daniel Rohrer, affiliated with Providence St. Vincent in Portland, Oregon. I won't say he is a god, because I lost that belief about doctors long ago when I was told I was a hypochondriac and just wanted attention. Yeah, right. An attention-seeking hypochondriac who just happened to have a fairly large tumor in her head.

I respect those who want to go the med route, but for me it was not even a consideration. I hope this helps, and I wish you heartfelt luck in your medical journey.

Perplexing (Peggy)

What an incredible journey this has been for you Perplexing Peggy! How wonderful that everything has worked out so well for you in the end!

I have to admit that I am totally unsettled about what my next step should be right now. The first neurosurgeon insisted that my macroadenoma needed to come out and the second one (who is at a premier center) said that it is inadvisable for me to pursue surgery. My IGF-1 levels are around 319 so he felt that meant my disease wasn't as bad. But, I feel that my acromegaly comes peaks and valleys. Sometimes, I am hot and sweaty and my bottom teeth feel loose and wiggly and other times I feel a little more normal. My face has changed a lot of over the years. Especially my nose...yikes! Also, the weight gain has been troubling. Should I get a third opinion? I would love a few more names of top notch surgeons. I appreciate all your suggestions. I have two little ones that need their Mommy so I really need to make the right choice. I would love as many suggestions as you would share. Thanks everyone.. Having this support is keeping me sane at the moment!!!

The videos my mom & I have been watching from Cleveland Clinic (from the cardiology department) encourage second and more opinions and my primary care physician does, too. He loves to remind me that it's MY body so I should not feel reluctant about being as well-informed as possible. When I felt pressured about being pushed into Gamma Knife surgery, I consulted with more than one radiologist in addition to researching as much as possible on my own.

Please keep us posted.

Rose

Rose,

Thank you so much for your input. You are such a blessing to folks like me who are trying to process all the ins and outs of this disease :-)

Theresa

Tmed - Where are you located? Which surgeons have you consulted so far?

I am in Cincinnati, Ohio. I consulted with Dr. Theosodopolous at UC who felt the tumor should come out and Dr. Weil at the Cleveland Clinic who felt the IGF and tumor should be managed with medicine and not surgery. Both doctors are very well respected, but with two totally different suggestions. I am willing to travel to see the best for a third opinion.

Hi Tmed:
And what is in your MRI? Your IGF-1 levels are not that bad but if the tumor is big it may press the sorrounding structures, so the surgery would be advisable. It is very usual for this tumours to be around the carotid artery.
How are your cortisol, prolactin, testosterone, levels?

My MRI shows a 1.5 cm macroadenoma with cavernous sinus invasion. My vision is not effected and all other labs are normal. Thanks!

Tmed:
My tumor was 1.3cm when diagnosed. My IGF-1 levels were, and still are, high and there was no cavernous sinus invasion. In my case everyone I asked recommended surgery.

In your case the tumour invaded the cavernous sinus and this makes the surgery more risky. I think this, and the facts that your IGF-1 levels are not that high and your tumor is not pressing the optic chiasma is what makes doctors have different opinions.
Having lanreotide or octreoide for a while may shrink your tumor and lower your IGF-1 levels to the normal range.
On the other hand, although risky, a surgery may remove part of the tumor, lower your IGF-1 levels and also reduce the chances that it a near future the tumor could press the optic chiasma.

I've heard some doctors recommending a mixed aproach. Have lanreotide or octreotide for a period of time and after that depending on your blood tests and a new MRI, re-evaluating the posibility of a surgery.
Greetings.