First lanreotide shot today

[claire d]

Hi John,

Thinking about weight loss on Lanreotide, I was consistently at least four pounds lighter when on my year's worth of
Lanreotide. I really don't know if that was the bouts of rushing to the loo or living on a diet a bit lower in fat.

It's interesting how different consultants put patients on varying doses of Lanreotide. I'm on the lowest dose I think you
can have, but the effects on me have been similar to the 120 or 90 mg doses from before.

Anyway, I'd have that ice cream if I were you!

Have a good week-end.

Claire

[dgrs]

Hi All,

Sorry been a while since I logged in and a Happy New Year to all.

John, hope you're getting on well with the drug. I found it made an enormouse difference to me and very quickly too. Within an hour of my first injection (a year ago now) I had some (wait for it!) dry skin on my hands... However, this passed and I did find after a few months I became more symptomatic as the month went on - the injections were almost like a top up. After my first operation my dosage was doubled to the maximum allowed and this my side effect were slightly worse with this higher dosage but the pros way outweight the cons.

I'm going in for my first day curve test since my second operation in a couple of weeks. Been an odd recovery. Immediate recovery was unbelievably quick - out of hospital in just over 48hrs and after a week I felt pretty normal - although every so often I was reminded I wasn't fully there. Now a month on, I feel like I'm not as far on as I was after my first operation. Been a bit down this week and have been getting some headaches which had disappeared after the first op.

Anyway - let us know how you're getting on with the drugs.

Dave

[JohnwithanhD]

Dave,

Good to see you back! And a happy new year to you.

I have just had the one injection so far, and the side effects are at the moment bearable (loose bowels for 3-4 days, strange coloured stools, plus cramping and flatulence a bit longer), though I have also been feeling a bit ropy with a suspected infection which has been going on since mid-December, and for which my GP prescribed a 28-day course of strong antibiotics early in the new year, so I don't quite know which is making me feel what. (The antibiotic appears finally to be be working, more than half way into the course, so maybe I'll be able to judge soon!) However, I've been into work every day since starting the jab, and I have taken only one Imodium so far.

I noticed that the lanreotide has cleared up some head fuzziness (you'll know what I mean by this), in the same way that the op seemed to do.

I was started on 90mg, and the hospital will take a day curve after three months to see how I am responding and whether they need to tweak the dosage up or down.

I took my first GP prescription into the chemist's down the road on Tuesday, telling the pharmacist it was a refrigerated item and would need to be ordered in. He was concerned that it might take some time getting hold of it (which is exactly why I took the form in two weeks early) but I got home today to find a answering machine message to say it was available for collection. Two days isn't too bad. I'll pick it up tomorrow (first time I will have stored anything in the fridge that cost considerably more than the fridge itself!)

John

[Paul Clarke]

Hi John,

I am delighted as I am sure all our mermbers are that your new medication appears to be going relatively well and I wish continued success for you.

Thinking of you,

Paul

[dgrs]

Hi John,

I made a little error. Sorry one forgets all the terms sometimes. I don't receive Lanreotide but Octreotide injections. I think I'm right in saying that both are somatostatin analogues but wanted to be clear that anything I may have said could have been nonesense for your situation!

My body has become more used to the injections and my side effects are not a problem (the tips about easy off greast food around the injection are good) but the biggest problem I now have is constipation with them. There was a time when I'd have the runs for 24-48hrs then I'd get constipated for a week... Then I got into a routine of taking senakot for a few days before and around the injection. This helped a lot although recently I've forgotten to do this.

Hope you continue to lose that fuzziness

Dave

[JohnwithanhD]

Yup, octreotide = Sandostatin, lanreotide = Somatuline. Close cousins. My consultant prefers lanreotide as it is easier to administer.

My first non-hospital Somatuline is sitting in my fridge. First time I've had something in there that cost more than the fridge itself!

John

[JohnwithanhD]

I had my second Somatuline this afternoon. It's a lot easier getting it done at the doctor's surgery rather than the hospital from a travel point of view.

Anyone here gone the self-injection route? The endocrine nurse suggested it as an option to consider for the future (if only occasionally for holidays etc)

John

[dgrs]

Hi (again) John,

Not yet I haven't although it's been mentioned that maybe once radiotherapy starts I may move to self administering ones. But if you thought our injections were expensive....

DAve

[JohnwithanhD]

Are they talking about pegvisomant for you, Dave?

John

[dgrs]

Are they talking about pegvisomant for you, Dave?

John

Yes it has been mentioned a few times and so far everything that has been mentioned has come to pass. Actually I don't mind the idea of self injecting. One of the things I realised very recently is now having control is one of the things that gets me down about being acromegalic. At least injecting myself would give me the illusion of control

Dave