Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Hi
I had an exceptional NET specialist who started me Lanreotide after 3 injections the side effects were diarrhea to the point of having to wear a diaper bloating nausea sweating major fatigue and brain fog
I had no symptoms before I started
I had to stop
Went to another oncologist and got Octreotide which for the first 2 months were ok
But then slowly started to effect me
My 5th injection gave me an infection at the injection site and after that was all down hill
It never gave me diarrhea but gave me severe carcinoid symptoms to where the 9th injection I thought I was having a stroke
I stopped
I am going back to my original NET team because they are exceptional and my liver is now compromised from either the treatments or the liver embolization I had in January to take the tumor load off the right side of my liver
I haven’t had any injections in 6 weeks and I am feeling wonderful
I have metastatic liver NET carcinoid of unknown origin
There are people that have taken the injections for many years without side effects
You won’t know if you don’t try
Good luck

Jump to this post

Follow up to this. The tumor in my SI must have been causing a partial blockage. The pain got so extreme i went to the ER 11days ago. A CTScan with dye indicated the SI had wrapped around the NET blocking the SI. Next day surgery removed 8inches of the SI, the primary tumor, and gallbladder. 10 days later still recovering from the surgery but able to eat more food without bloating and associated pain. Gaining weight after 5months of weight loss.

Jump to this post

Thank you for sharing. my husband has P-NET. and was getting Sandostatin shots monthly, they gave him Lanreotide and he got sick, but I said that could be lack of enough food, etc. and it was his first shot . She said they are basically the same? He also had 3 liver embolizations which I would like to hear more about yours? I am interested to hear about your treatment and what are you doing next? God Bless and keep fighting! I'm a 3x survivor so I'll sit on the sidelines! Thank you be well
Joni

Jump to this post

Ill continue monthly Somatuline depot (Lanreotide) shot to contain cancer. Quarterly MRIs will determine future action or status quo.

Jump to this post

@stevestenberg31

I so appreciate the update about your surgery. You explained the situation so well.

I am glad to hear that you are doing better post-surgery. That sounds like a very extensive surgery. How long were you in the hospital after the surgery? What type of eating plan are you following now?

Are there any follow up treatments being planned?

Jump to this post

4 nights in the hospital after the surgery. Eating mostly plant based diet plus fish. No red meat and low fat as the liver is compromised. I seem to be able to eat more calories then before surgery so im assuming the SINET was a causing a partial blockage for some time before becoming worse. I will continue monthly Somatuline depot shot coupled with quarterly MRIs to track progress or changes in NETs.

Jump to this post

I so appreciate the way you have shared your post-surgery lifestyle, @stevestenberg31. It will be helpful to others facing a similar situation.

I look forward to hearing from you again as you continue the recovery process. Will you continue to post with insights as well as questions?

Jump to this post

Yes. Im appreciative of the knowledge im gaining from other's post too. Id like to join the monthly zoom but i cant this Thursday.

Jump to this post