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.
Try the Cabergoline. My son has had Acromegaly for five years. His GH was up over 1,200 and never went down below 371 while on Sandostatin monthly (from 20 to 40 mg. shot). In July the doctor added Cabergoline and the latest blood test shows a GH level of 224! That is about a 150 point difference in just a few months!
awwwwww shucks, that is just wrong. wish i could make this go away for all of us. If it’s any consolation the needle used with pegvisomant is an insulin needle instead of the big needles used with other suppresents. I pray your symptoms crawl back into the controlled zone asap.
Hi Trys
Wanted to catch up to see how you’re doing. Sorry to hear that octreotide isn’t controlling your levels. Hopefully you’ll not have to wait another 3 months to hear from your consultant and what he/she’s decided to do.
I just wondered if the delay in having surgery was due to the added risk of damaging the pituitary and affecting your testosterone levels? But doesn’t active acromegaly affect your testosterone levels anyway?
Good luck Trys
x
Hi Trys
Sorry to hear that the octreotide isn’t working on its own.
I’m the other way round from you — I had the surgery and that hasn’t worked on its own. I started with IGF-1 at 131 nanomoles/litre (1000 micorgrams/ml), and at last measurement, 3 months after the op, I was at 45 nanomoles/litre of IGF-1 (344 micrograms/ml).
I need to be below 32 nmol/l, (age adjusted). That equates to 244 micrograms/ml.
I’m heading to hospital myself in just under two weeks, they want me to start on octreotide/lanreotide and will be discussing options with me then.
If you take the plunge with the surgery at some point, you have my wholehearted recommendation. I have no regrets.
John
Hi Trystan,
What a frustration. As I have posted, my IGF-1 levels went down only after I received my Sando every 3 weeks instead of every 4 weeks and I feel like a whole new person.
I do not regret having the surgery but I truly understand your priorities right now. I did understand that before I agreed to the surgery that my chances of having another child with Acromegaly was slim but that was not my only concern as I was also contemplating complications during the surgery and of course it resulting in death….but I had lots of confidence in my surgeon and his reputation was highly regarded. Here I am today, accepting my Acromegaly and it being controlled with meds for the rest of my life. I can enjoy life today with my son and husband
Either way, I truly hope that one day, you will be symptom free.
All the best,
Julie
My Daughter 29yrs old has had surgery x2 radiotherapy, external beam, tried lanreotide, octreotide, last 3 years, levels still high, she went on Pegvisamont 3 months ago, levels normal, she does not have to inject every day, which she was dreading, once a week she injects 20mg x3 I think there are a few ways of the medicating.
Hi Trys,
Sorry to hear about the results. I’m in the same boat as you, actually. My endo wants me to go from Sanostatin LAR 30 /4 weeks to /3 weeks.
Hope you’re doing well, and as always, thanks for sharing.
-Ellen
PS, I’m very curious about pegvisomant – from what I’ve read, it is the most effective with normalization in 90+ percent of patients, but it is very expensive and requires frequent injections.
I hope you find treatment that works for you, good luck!
Hi Trys,
My daughter didnt have much success with sando orlanreotide, levels were still high, a few months ago they switched her to Pegvisamont, her levels are now in the normal range, she has had 2 surgeries and 5 weeks of radiotherapy, remnant tumour which is still big is stable, she had just been back for her usual 3 month checkup at Barts everything still good as far as her levels, also now off the 3 weekly jab of Sandostatin, unfortunately the tumour is presssing on the 5th cranial nerve(trigeminal pain) which is the biggest problem now. Hope things get better for you, she was so upset at first at injecrting herself but now never mentions it. she has 3 doses once a week