Hi zaone

I notice that you are in the UK too. I have read about gamma knife, I'm not sure how the NHS funding works for that (given that there aren't many gamma knife centres in the UK), nor if it would be recommended for me in any case. It's good to know that there are people for whom it works well. Zapping with radiation does seem quite scary though.

I have another appointment in November. If I don't hear from the hospital in the meantime, I'll see what they say then.

John

Hi John, I have been following your story for a while now. I am in much the same position, Ive had surgery twice but still have high IGF readings. I am on no medication at present but have been told that radiotherapy (gamma knife)would be the proposed option provided the MRI shows that the optic nerve is not in danger. My endo is on holiday at the minute so Ive to wait to hear. Nobody has given me the option of having injections as the Endo keeps saying you are only 42 and it would be best to try the radiation first. I dont agree however. I have 3 young daughters and want to be able to enjoy time with them as I feel very well at present.

Hi HighStreetMusical

Sorry to hear your story, and can understand your dilemma. The problem seems to be that every endo has a different opinion. I wonder why they recommend the GammaKnife which doesn't have an immediate effect anyhow and is seen by a lot of acro's as the last resort. The drug option is definitely the most expensive, but do have an immediate effect and are deemed as less invasive than Gammaknife. When I questioned my endo (again) on medications, should they be necessary after my upcoming surgery, he said I wouldn't have to go back on Octreotide, which seems to be the one that SOME endo's are concerned about with long term effects, namely diabetes. Could you ask your endo if you could go on pegvisamort? spello could be incorrect. That would target your IGF-1 levels and not run the same risks long term.

The endo's don't seem to have the same concerns that we do, I wonder if they'd have the same reservations and worries, if they were in our position.

Hello Shelley,
A significant % of people treated with the 2 meds together had problems with the liver.
Here the info from the lab :

http://www.hc-sc.gc.ca/dhp-mps/medeff/advisories-avis/public/_2008/somavert_pc-cp-eng.php


Glad to hear you took a decision. I was frightened before surgery. Then the D day was so easy and a day later it was over !
Even if only half of adenoma was kicked out, I have no regret and think it was not the most difficult part of the Acro fight.
Wish you the best for the op.

I must admit I was mildly terrified by the prospect of surgery. After I woke up from the operation, I wondered what I'd been worried about. I'm convinced that the MRI was worse than the actual surgery (though I will concede that I was knocked out for the surgery!)

Now I begin to wonder about radiotherapy, further surgery, or the possibility of lifetime drug treatment. I can't see any of these being as problem-free or as effective as the initial surgery.

John

Hi,
how did the surgery go? I have a macro pituitary tumor with acromegaly never dxed. I have a question? My IGF-! was 230 a few years ago age 58 then - I was told the number was normal. What is the normal number?
I am worried about the surgery. So much can go wrong signed release today. I need help!!!!!!!!!!!!

Just went to see my GP for results of my 24-hour blood pressure test from a few weeks back; it's a lot, lot better than before surgery, though not perfect. The diastolic (the lower of the two numbers) is still a bit high during the daytime. I am going to try doubling up of one of my BP drugs for a couple of months, then do a 24-hour BP test again.

It may be that the IGF-1 sorts itself out (either through time or further treatment) that I can lower or even come off the BP drugs.

From the letter that the hospital sent my GP, it sounds like they want to "wait and see" regarding my IGF-1 and GH levels. (Hmm, they forgot to let me know that)

My blood pressure is now in the normal range for the last four weeks or so, (that's about 2 1/2 months after surgery). I still have the prescription in case it comes back up, but so far haven't used it. I do find a little bit of puffiness sometimes, that is helped with a diuretic. I began to experience the diarrhea associated with the Sandostatin LAR when I stopped taking the diuretic for high blood pressure. Taking the diuretic brings back the constipation. Wonder if there's a happy medium?

Granin, try drinking a fiber mix daily.......... I know it sounds crazy but it helps believe me.....I was diagnosed with macro in 2000 and have been on the shots since...........as well as two trans.p and one Gamma Knife..........the current Endo changed me over to the LAR monthly shot 2 years ago and today the IGF-1 level is down to 90.....normal range for my age (53)..........it's still a fight though.......the damage the Acro monster does can't be reversed..... John, my first Endo, who is now the director of pituitary tumor research at one of the major pharm. told me from day one that there is no cure per the normal definition of cure........ that the best I could hope for was to keep the Acro monster under control.......that was considered a cure. And that my future would most likely be monthly shots and all the other supplements........the last MRI shows no change in the tumor area, but if I stop the shots the IGF-1 levels start climbing again...............as she described it, cells the size of a pin head are enough to stimulate the pit production of HGH........It's been 6 years since the GK and that was a total failure, a $150,000 + failure.......we need to constantly monitor and listen to our bodies in our fight against this beast.........it's attack is insidious and mostly hidden........I don't mean to sound pessimistic, but this is an every day fight...........mentally and physically. It can be controlled and for the most part a normal life can be had.........within the limits our bodies set for us..........that is why it is so very important to learn to listen to what your body is telling you. There will be days when your body simply says not today and you need to listen to it and just chill for the day....... take care of your body, eat healthy, rest, exercise (water aerobics are good, Tia Chi is great, stretching, etc. anything low impact) and mental conditioning (positive thinking, whatever floats your boat... .mine is fly fishing and art work)..........this is just a speed bump in the road of life... but I sure wish someone would make them slightly smaller if they could.

I wish I could get on with these antihypertensives. They don't seem to work too effectively with me, though the hypertension is a whole lot better than it was immediately before surgery. I'm still hovering around the 135/88 mark, and the doctor wants to get it lower based on the 24 hour blood test result.

So I have doubled up the dose of the amlodipine I was taking, and I now get woken up by stinking headaches and dry mouth several times in the night (which of course leaves me tired all day).

I'm going to see if my body tolerates the higher dose after another week.

Diuretics seem to work, the times I have tried them, in getting my BP down but they make me feel so rough, and just about every time I've had them I've ended up with hypokalemia (low potassium), despite the fact that the candesartan I'm also taking is supposed to make you retain potassium, so they should cancel each other out. Sigh.

Well, I saw the consultant today. Although my GH is only slightly elevated now, he is recommending that I start on lanreotide (Somatuline) on a monthly dose. With this in mind, I have another octreotide suppression test to look forward to in a couple of weeks, where I have to fast until 3pm while they take bloods every hour to see how a single dose of octreotide suppresses my GH.

So at some point in the next few months, I will be joining those of you on the monthly jab.

After the first hospital-administered injection, the hospital will send down an endocrine nurse to my GP's to train them in giving the injection correctly. Thereafter, it will be a two minute stroll from my front door to the doctor's to get my monthly injection.

John