Lanreotide injection

Hi hannahdiane92 and a very warm welcome to the online community

I'm sorry to read that your NETS has returned. That must have been very difficult news for you to hear.

I had a different type of cancer so don't have any experience with lanreotide injections. However, I've searched the group for previous posts on this topic and found these for you to have a look through. I noticed that Liza5 recently posted that she was happy to provide information so I've tagged her into my reply to you and hope she'll be able to pop on to share her experiences with you.

When you feel ready, it would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi,

I know this post is from a while ago but new to the community. I am stage 4 and have had 46 Lanreotide injections to date.

I wish I started on them earlier but went a couple of years just putting up with a slowly deterating side effects of the NETs. Nobody looks forward to the injection, but the difference it makes is amazing, it is like having my life back. I can venture further from the bathroom and a year in even started Park Runs (slowly).

My personal experience is very positive, however I don't recommend trying to self inject in the leg, far better for a home nurse to do it in the top of the butt cheek (not technical description sorry :-) )

My Oncologist told me he has a few patients that have been having injections for over ten years.

A good description by one of my nurses is it is like "putting the NET in the slow lane" 

I know we are all different I consider myself quite lucky, I had a NET removed 10 years ago a couple came back and were being monitored and now I think I have twelve but still managing to work and lead a relatively normal life. Not operable or curable now but managing very well thanks to the Lanreotide injections and hope to have many years left :-)

Hopefully a positive post for anyone just starting out on the injections.

Best Wishes to all :-)

Hi there I’ve been having sandostatin lar injection for past 13yrs they used to work but I feel they are not having such a positive impact now and I now have to have them every 2 weeks as opposed to once a month I will mention this injection to my team next time I speak. Thank you you’ve given me something to look forward to as at the moment I’m struggling with the pains I get from my liver for which I take pregabalin tablets 3 per day 150mg each tablet. 
spotter. 

Hi Spotter

I believe Lanreotide is similar it works for a period of time and then becomes less effective and is greatly different for patients ranging from a few months to 10+ years. I believe they don't really know why it tends to tail off...

I also understand that the Lanreotide works in two different ways:

It slows growth of the NET by forming a coating around it that restricts growth, effectively slowing it down. It can not stop or reverse the process and this is why the probably try and start early in development after surgical intervention is no longer viable.

It also slows the relaese of hormones in the digestive system and helps greatly with settling the bowel etc.

Hi. Thank you for your information interesting and a discussion I’ll have with my oncologist. I have not got a date yet for them to discuss with me my recent scan but after that meeting I’ll update you. 
cheers and take care. 

Hi Han, I was diagnosed with net in February 21 but it was the small bowl and the liver, I've been on the lanerotide since I was , I did dread it at 1st as I have to have it in the rear so can't do it myself, so the net nurse showed my wife how to do it , now it's not a problem as it's slowing the tumors down that are in the liver because I had the small bowl removed, so if you could get a family member to learn how to do it for you and I do lay on the bed to seems to help. I feel okay but do feel a bit tired close to the time of the injection and a bit loose after a day after but I think that's because have no small bowl? But otherwise feeling okay no real  other side effects hopefully I've helped, 

HI. I have just been diagnosed with NETs which started in my small bowel and also to my liver. I have just started having the Lanreotide injections. i also feel tired and fatigued most of the time.