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

How long have you been off the shots? How are your scans? I have so many knows from the shots and hate to think that is my future. Running out of space to get shot as its is all knotty,
Anyway would love to know more about your experience with no shots

I honestly have no idea but you should reach out to Mayo and see if they could take you. There’s no better care than Mayo. I live in Las Vegas and was under the care of an oncologist here who basically just put me on lanreotide shots. “Standard procedure” mainly because he didn’t know much about neuroendocrine cancer! I’m going on my 4th year after having the tumor on my liver removed. I go to mayo every six months for my scans. So far so good, nothings changed but I hold my breath before every scan. I chose to get off the shots because they wreaked havoc on my system. So for me when the treatment didn’t “cure” my cancer & make my quality of life worse I chose to stop it. I do hope you reach out to Mayo and I wish you God speed. Stay in touch if you like. ♥️

Dear spinhead,
I hope that you are doing well. I learned a lot from your post. I’m just diagnosed with pNET and very scared. I’m from Canada and don’t have insurance in US. I wonder if you know if I can do all the tests and treatments in Canada but have 2nd opinion from Mayo. Thanks

Dear spinhead,
I hope that you are doing well. I learned a lot from your post. I’m just diagnosed with pNET and very scared. I’m from Canada and don’t have insurance in US. I wonder if you know if I can do all the tests and treatments in Canada but have 2nd opinion from Mayo. Thanks

After getting my gallium scan they found no changes, no spreading. Basically nothing has changed so I’m staying off the lanreotide unless things change because for me the side affects were worse than what the cancer symptoms are. I do want to express though what works for me may not work for others so please listen to your oncologist. I also want to express that if you have the opportunity please seek help from Mayo Clinic if you possibly can. They have the best most advanced knowledge on neuroendocrine tumors. If you’re getting treatment elsewhere please at least give yourself the benefit of having Mayo give you a 2nd opinion. This is your life, make it last. God bless each of you and I pray for you all 🤗🙏♥️♥️♥️

This site is new to me. I was diagnosed with NET and Carcinoid Syndrome in 2013. Found by accident when being worked up for abdomenal pains and diarrhea. CT showed liver tumors. Not until 2014 during surgery to remove tumors did the surgeon visual the primary at ileocecal area. Hemi-colectomy removed primary.

I have taken Octreotide in the first few years and then Lanreotide depot monthly. My diarrhea is manageable. Tincture of Opium (to stop spasms and pain and diarrhea when eating) and Oxycontin twice a day to constipate me...has been my quality of life saviors. After a few years of this routine, I can plan time away from my bathroom.

On diagnosis 5 years was expected longevity. My doc said he had a patient living with this 10 years!
I am now 10 years out and my scans and labs are still ok with no detectable new growth. As hard and painful as this disease can be....I am still here.

I do have days that I cannot explain to myself why I feel so awful...but then a good day. I have found my symptoms debilitating at times, but I am still here (72). It is my belief that our uniqueness makes trying to answer all the questions we may have. If I have to continue this miasma of symptoms....I will....I struggle with depression about all this, but when I see my grandchild and family....I am thankful. My advice....continue to treat yourself and be thankful for each day.
KPM

My 88 year old loved one has had a gallbladder full of stones before starting lanreotide monthly injections for metastatic lung carcinoids. I questioned the oncologist because the warning mention not to give if you have gallstones. He pressed on that it was fine. Repeat this pattern every month because she had worsening abdominal pain., a palpable hardened Right upper quadrant with intense sweating. Finally the oncologist ( if you can call him that) said " oh the cancer must be worse... time for either chemo ( which she is too frail for) or hospice. Oh ... but since you are here... how about 1 more injection of lanreotide." Thankfully my loved one turned down the shot.( That he already said was not helping ) We are now a few weeks from that appointment.. her urine is increased... the hardened spot is gone... and the abdominal pain too! Not impressed with lanreotide by this experience.

My 88 year old loved one has had a gallbladder full of stones before starting lanreotide monthly injections for metastatic lung carcinoids. I questioned the oncologist because the warning mention not to give if you have gallstones. He pressed on that it was fine. Repeat this pattern every month because she had worsening abdominal pain., a palpable hardened Right upper quadrant with intense sweating. Finally the oncologist ( if you can call him that) said " oh the cancer must be worse... time for either chemo ( which she is too frail for) or hospice. Oh ... but since you are here... how about 1 more injection of lanreotide." Thankfully my loved one turned down the shot.( That he already said was not helping ) We are now a few weeks from that appointment.. her urine is increased... the hardened spot is gone... and the abdominal pain too! Not impressed with lanreotide by this experience.