Uncontrolled Acromegaly on Sandostatin LAR

I’ve just rang the hospital to get the results of my last ‘Day Curve’ to find out what my Insulin-like Growth Factor 1 (IGF-1) level is.

Bad news. My acromegaly is not fully controlled by Sandostatin LAR.

It’s at a level of 538 mg/ml it should be less than about 290 mg/ml (age-adjusted) for me to be termed as ‘biochemically controlled’. It’s still a whole lot lower than my untreated level of 1244 mg/ml.

 This value is higher than three months ago when it was 499 mg/ml, after which my Sandostatin LAR dose was increased from 20mg to 30mg.

It’s not good news, but I still have other options available, increasing the frequency of my injections to every three weeks, combining with a daily tablet of  Cabergoline.  An option is a daily injection of Pegvisomant which works to control acromegaly is the great majority of people. I’d rather not have an injection every day if I can avoid it, but heh, if it makes me better then I suppose I’ll have to do it.

The other option, is to have the operation sooner than planned. I have been delaying the operation whilst we try for children just incase .

These options are ones that no doubt will be covered next time I see the professor.