john...my numbers went down up down up...until a year and a half after the surgery I finally have had two consecutive readings in the normal range....Like Jokey I think eveyr person has to choose for themsleves ....I think that this site may not be representative because I wonder once people are well do they just move on..I think the docs are calling my surgery a success and by the way I had a very large tumor a Marco...but I am stikcing around because I have made connections with epople that mean a lot to me...connections beyond this disaease...connections when it's 3 AM and your all alone..and you connect on the net...so to all my core old buddies...I still think of you...and to all the new folks this site is really helpful and worth sticking around for..I strongly encourage newcomers to read old entries...to helo guide them to a heart mind deiscion about hteir own journey..

Reading what Mctrjct wrote for myself whatever path whether its right or wrong for me so far its been right but for each thats to do whats right for them with a good team being your advocate because you are the main one and you do everything you can for you.This support group for me Im holding up my hand its worth staying around for because like M some members simply saved my life Im not sure where I would have been without them.Ive come across some wonderful beautiful hearted people that will stay in mine forever.

I keep trying to spell your name M can never do it even again and your just above I get it wrong sorry maybe its because I knew your other profile name in the days when the site use to lock people out although some it should have done oh LOL.

jokey remember how the site would lock us out..te he I can't tell that you don't type my name right have you seen how I type lately...mana I read the stuff I wrote and I can't believe it...anyway here is a big hi for all of us...!!!(acro monster...shrinks with hugs..)

Hi John

You must be very encouraged by the comments from others, it sounds like it's still early days and your levels are probably fluctuating wildly. Did they say how long they wait until they make a decision of controlling your levels with Sandostatin?

You're an inspiration to me, you've remained positive throughout and I'm sure that's very helpful in your recovery.

Your story definitely hasn't put me off surgery, but made me rethink it (yet again), I'd pencilled in my surgery for 10th August and now I'm not sure what to do.

I'm showing my age here, but does anyone remember 'It's a knockout' that was on TV in the 70's/80's. I liken surgery to playing my 'joker' and once it's used, I've lost my best opportunity of fighting this disease for ever. I'm not sure I want to play my 'joker' yet, and if I should just play a few more games to keep me in the battle. Does that make sense?

Shelley, in my case, it was 11 months post-surgery before I went on meds & if the docs at Mayo would have had their way, I would have had gamma knife first at 12 or 13 months, THEN would have started the meds. I am resisting the gamma knife treatment and trying to avoid radiation as long as possible. If the remnants that I have begin to grow in size or something happens where the drugs are no longer effective for me I will reconsider, but for now, I have been able to escape it,

Oh Rose, what a dilemma. I hope and pray that the MRI shows some good news for you and you don't have to consider further invasive treatment.

Have the meds stopped working for you?

I actually I just started the meds 2 months ago and I'm getting excellent results and the MRI showed such wonderful results that the gamma knife guy at Mayo told me there was no reason for me to talk to him and nothing for him to go after unless I just don't want to have to take those meds any more.

So that is one thing for people to consider who may be worried about long term exposure to the drugs because they have remnants. They could opt for the gamma knife treatment and try for a "complete cure" as one of the Mayo endocrinologists puts it.

Dr. POLLOCK, the guy at Mayo, said he's getting good results and it looks like he might be onto to something regarding why some people did not have good results with gamma knife (like our Life's Palette - although I'm not sure if he had been taking sandostatin.) In any case, as I posted elsewhere, sandostatin, supresses the tumor and the tumor needs to be active at the time radiation is used on it, according to Dr. POLLOCK, so he would want his patients to be off any form of sandostatin for several months prior to the treatment.

Were you not on any medication after surgery and if so, how often did they check your levels? How long was it after surgery before you had to start the medication?

If the Sandostatin is controlling your IGF-1 levels, then hopefully gamma knife will not be required.

Shelley,

Well, I was a mild case of acromegaly as far as the doctors were concerned. The effects were not seen to be too bad in comparison with many. Even my GH was relatively low for an acromegalic (though my IGF-1 was another matter!) However, after surgery and a few weeks' recovery, I realised that I hadn't popped a paracetamol for headache for weeks... that I was sleeping through the night... that I wasn't choking at night... that I no longer felt constantly parched... that I was no longer tired all day... that old trousers now fit me... that my blood pressure was coming down. Many of these things I hadn't even thought of as effects of acromegaly. I really did (and do) feel younger.

I do not yet know when the hospital will be in touch, but I am sure they will. At the moment I am not worrying as I know it can take time for numbers to settle.

I understand your joker allusion, but in many games there can be a best time to play it. The best time might well be now.

As for It's a Knockout, just don't collapse in hysterics like Stuart Hall used to! (Or maybe you should -- he always sounded like he was enjoying himself!)

John

Wasn't he just great - what an infectious laugh he had, just wasn't the same when Frank Bruno did it was it? Used to love that programme, it was good old fashioned entertainment, wasn't it.

A lot of what you've mentioned John is what I've had since taking the Octreotide, so it'd be interesting to compare any further benefits after surgery (when I eventually have it).

You could be right, maybe this is the right time to play my 'Ace card', it might not be such a winning trick if I play it too late!

I'll ask the endo on Thursday how long it takes for your levels to stabilise after surgery, it might take a good few months before you get a clear picture of what's been achieved.

Fingers crossed for you John

The levels were checked about every 3 months. I didn't go on meds until 11 months post surgery and that was a local endo's decision not a Mayo endo. I'll keep my cards close to my chest on that one for the moment except to say that it seems their right hand doesn't know what their left hand is doing and acro patients absolutely need to be their own advocates and stay informed. I knew from the outset that I did not want the gamma knife and I would have been pushed to have it if it had not been for the local guy putting me on the octreotide, then the sandostatin.

You are right, because the tumor is almost non-existant and the meds are controlling the IGF-1 I can avoid the gamma knife, at least for now. Thank God. I feel very relieved and blessed and grateful and hope it will last for a long time.

11 months seems an awful long time to go without being medicated. Maybe they were thinking that you would be having GammaKnife and they wanted the Acromegaly to be active.

I looked at the Sandostation LAR information leaflet, and they recommend that it is withdrawn for a month before treatment, but can't remember if it said surgery or radiotherapy.

Hopefully the Sandostatin will keep your levels under control, and there won't be a need for GammaKnife after all.

Hi JohnD1,
I had almost the same problem: after the surgery I suffered a relapse. This time, because the size of the adenoma was too small, doctors recommended gamma knife.
After having gamma knife everything is back to normal now and it seems that the chance of having another relapse is almost 0.

Did you consider having gamma knife ? It is not like classical radiotherapy. Have a look on the internet, it might be really helpful.

Good luck,
zaOne

Shelley, the recommendation was probably in regards to radiation.

Before having any form of radiation, the doctor I consulted in Michigan was talking about switching from Sandostatin LAR to Octreotide for a couple of months and then going off everything for a couple of weeks. The doctor at Mayo disagreed. He said the tumor needs to be active and everything needs to be discontinued for a minimum of 4 months.

What I find interesting is that the "apostle" at Mayo told me the reason they were considering the gamma knife for me (that I have clearly opposed from the beginning) is because they "thought I had taken medications and did not respond well to them." !@&*#@$%#%$# !!!!!!!!! Why do I fill out 12 pages of forms nearly every time when I go there and part of the forms has to do with medications and the last time when I went they checked to see if there had been any changes since my February visit? Why did they say in February that they would start medications in June AFTER doing the gamma knife? There is no reason for anyone to have thought that I was ever taking any medication to which I did not respond.

za One, (that's a cute name !)
I am glad you have had such good results ! If things change for me and I have to put my big girl panties on and do this thing one day and you're still hanging around us, I'll have to ask you more about it. In any case, I'm glad to see you here with us now.

Peace and Love

Rose