Acromegaly Support Group

Hi JohnDI my Encro my last results were normal got an A lol but this time the Encro wants an A* I think they changed their mind he said he wants my numbers lower he said it was good enough five years ago but they want better its funny there was alot of us on here that suddenly had MRIs at the same time they told me I wasnt getting one then Flouncy and myself got an appointment a day after each other.My fiqures were good enough but now not But one thing they are doing more or they dont know because they keep trying to change my drug this I did go nuts at that was before they had even done the MRI and found my tumour is shrinking.

Think I'm going to borrow Jokey's rattle today & tomorrow. Am at Mayo and had the ride through the torpedo tube this a.m. They even have a consultation with a C specialist on my "appointment card" :-(. Saw the headache doc a few minutes ago and she wants me to consider botox injections !!!!!

JJ, glad to know the tumor is shrinking - any and all good news is more than welcome.

John - it's a sneaky disease. Even when they tell you that you're cured, you can't stay confident in that and you have to be vigilant to get those MRIs and blood tests and be on the lookout. In a way, we are the luckier ones because we know and we are fighting. All for one and one for all. Let's kick the acromonster's butt

Thanks. I must admit that I am a bit disappointed (though I felt inside that things might not be 100%, funny how you can sense these things).

Both further surgery and radiation run the risk of damaging the pituitary so that I need to supplement with hormones artificially for the rest of my life, and of course the radiation can take years to prove its worth. I know from the octreotide suppression test that the hospital did pre-surgery that I respond to octretotide, so Sandostatin Lar is a possibility.

Ho hum. I will wait to hear the outcome of the review they will be doing on me.

My specalist nurse is very good and right from day one of being told I had acromegaly or the Acromonster I call it she said there is not a cure its a chronic illness they can Try to help to get us to a managable level via the treatments.My Encro was saying my levels are not good this was even before the tumour was checked to see if it had shrunk he started going on about the fiqures and said five years ago this is classed as a cure I questioned him on his word cured and said theres no cure he agreed.I saw my doctor and we discussed how the drug is shrinking tumour my levels are not shooting to how they first was and the symptoms are managable the doctor wrote logical on my notes and agrees I should not be switched between drugs unless anything changes as I feel different the next levels come back really bad or the next MRI shows a bad change.I know my encro wants an A* love him also but we have to look at the whole picture research whats right for us and throw your rattle handing rattle to Rose lol.I agree with Rose never not keep on this sneaky conditon.

Hi John....Don't get too discouraged. Many of us have gone through the same things. My surgery was considered a success immediately following surgery but when the GH & IGF-1 did not fall into the treatment goal range, I had to go on Sandostatin LAR. That is keeping it within goal and I just had an MRI, it's been 14 months since my surgery and the MRI says "not clear whether there remains a small amount of residual tumor or just a small resection cavity lateral to the normal pituitary gland". The fact is, I still have acromegaly and having treatment to keep the monstor at bay. Best wishes to you with making future treatment decisions. Janey

Same results here, John. I just had my surgery on April 14 and had immediate physical results. On May 27 and 28 had the follow-up, and the neurosurgeon and endocrinologist were beaming after looking at the MRI because they were pretty sure they had gotten it all. Somehow I knew better and didn't start celebrating. The blood tests came back with GH OF 732, down from 1034, but not down to 1 where they wanted them (don't recall IGF-1 numbers). So I'm on Sandostatin LAR monthly injections, which are continuing to reduce the effects of GH.

I feel great, much more agile than I used to be, no bad side effects (except a little constipation), continuing to lose weight, and my blood pressure is at normal levels (I see my PCP tomorrow to confirm, but I ran out of metoprolol about 5 days ago and haven't refilled the prescription because I was having too-low blood pressure episodes.) I'm back to working my horses and doing things on my little farm, doing all the activities I used to three years ago or more, before the effects of GH really took over. Normal age (56) stuff is still there (lol), like some gray hair. Still have big feet and big hands, but I won't complain (sure wish I could find some classy dress shoes, though, for dress-up occasions. And I'm still very self-conscious about my not-so-feminine hands.) Right now I can live with the effects of acromegaly still remaining, if necessary. Especially after seeing the Today Show video of that poor young woman. I shudder to think where I'd be if I hadn't seen a description in a nursing school textbook. I pray she gets the help she needs (and I'll bet she will if it's humanly possible) from the Pituitary Network founder who was on the show with her. I hope they (or someone!) follow up with her.

Here's hoping you have AT LEAST as good an outcome as I have thus far, even if it isn't quite the cure we'd like to have. Please do keep coming back and keeping us informed...and we do have to be vigilant and pro-active, as Rose said. We have to be our own advocates, as the PNA founder said on the Today Show. He got treated (and by the same surgeon as she!) early on because he wouldn't give up. Have I gotten off track yet? LOL

Eileen
aka Granin

Hi,

If that young lady was treated by the same surgeon what on eath happened, I thought I had heard that she could not have surgery, it was inoperable, I cant understand how she has become so ill, did they offer her radiotherapy, do you think,maybe she refused that, becase if they cant operate, that is generally the next step I think,Mr Melmed is supposed to be one of the best, anyone else have any comments on this

Thanks all. I suppose I should consider the fact that the GH and IGF-1 are only slightly elevated to be a measure of success. I am guessing that the hospital will want me on Sandostatin, though they did say that further surgery, radiation or drug therapy would all be options.

In the meantime, I will wait to hear from the hospital their multidisciplinary review of my results, and their recommendations.

John

BTW, we'd like you to hang around for quite a while in any case ;-). The people who get great news can give encouragement to the others that come along and serve as examples that show one of the better ways that things can turn out.

Hey you guys I really want to give you some encouragement,it's been a year and half now since I was told I was cured, and so far so good. My test I have been having every six months have been normal so far.Think positive.I still have the fear it(Acromonster) may return but right now I am living in the positive.Love to you all.