by robjmann » Fri Jan 14, 2011 6:51 pm
Sorry for the delay in responding to your post Icky.
I was first diagnosed with a macro-prolactinoma about 3 years ago and was initially treated with Cabergoline, which worked in respect of reducing my prolactin level down from 11,500 to under 200. Scans also showed some shrinkage in the tumour and my pain around the right eye lessened considerably.
Unfortunately the side-effect of this drug made me very light-headed all the time - the same sensation as standing up too quickly (blood rush).
After consultation at about six months into treatment, my medication was changed to Quinagolide. I got on well with this for about 12 months, although scans showed small regrowth in the tumour and some occasional bleeding, the prolactin and other hormone levels stayed within bounds.
It was approx.14 months ago that I started having very severe headaches and nausia. My sleep patterns were all over the place, lost my appetite and suffered very low moods.
Another consultation followed scans, and the dose of Quinagolide was doubled (as prolactin levels had increased slightly and the tumour was still the same size but showing signs of haemorraging). This had an immediate short term effect, but things have gone downhill again over the last 3-4 months - same symptoms as before, but the low moods and lack of motivation are the worst.
Surgery was discussed back in July 2010, but was put on the backburner at my last consult in October for reasons I am still not too sure about, except that everyone seems to think its a last resort.
I have recontacted my endochrinologist and a further scan is being fixed up prior to seeing him again ASAP - the symptoms remain although the headaches are less frequent but still as intense. I don't want to pop strong painkillers all the time as they wipe me out for up to 12 hours at a time.
I am almost resigned to going under the knife and all that brings with it in post op. but lets see what happens next.
Hope this posting helps, but I've just read it back and it seems like a big whinge to me!
Rob
Last edited by
robjmann on Mon Jan 17, 2011 12:54 am, edited 1 time in total.