1. < Neuroendocrine Tumors (NETs)
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NET related side effect constipation

Posted by susan481 @susan481, Apr 30, 2025

My partner has recently been diagnosed with stage 4, grade 2 pancreatic origin NET. She started lanreotide & is experiencing diarrhea but then painful problematic constipation. She has tried warm water, ginger tea, smooth move tea, and yoga. Advice?

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buffalogrammy | @buffalogrammy | May 4 10:50am

I've had struggles with constipation also and a couple things I do are
Keep a little stool in the bathroom for my feet to keep my knees above my hips, bend forward and back several times, and twist body to the left about ten times. It tends to loosen everything up. Walking also loosens it up. I understand the back pain, try reaching for toes a couple times to loosen the back and talk to a physical therapist. Hope all these suggestions help. If it wasn't for digestive issues, I'd feel pretty good. I get monthly ocreatide injections and I'm getting my second Y90 treatment this month.

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pavlina60 | @pavlina60 | May 4 11:48am
In reply to @miracle95 "@pavlina60 My husband’s pain is getting worse everyday. He used to go to the gym 3/4..." + (show)
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@pavlina60

My husband’s pain is getting worse everyday. He used to go to the gym 3/4 times a week until this past November. He used to be a runner and very fit. Now he can barely get out of bed. His pain is constant. We have had a PET scan and a recent thoracic MRI. PET shows no bone issues. Will get the MRI results tomorrow. I’ve read that multiple myeloma can create excessive back pain and bone pain. I’m asking the GP for a referral for a bone marrow biopsy for him. I started getting high fevers and horrible bone pain about 4 years ago and a bone marrow biopsy determined I have chronic lymphocytic leukemia. So I’m trying to figure out if another form of cancer could be the culprit for the back pain.

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Oh, dear! I hope he gets clean results from MRI and biopsy! Prayers!

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Turkey, Volunteer Mentor | @tomrennie | May 4 12:02pm
In reply to @miracle95 "@pavlina60 My husband’s pain is getting worse everyday. He used to go to the gym 3/4..." + (show)
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@pavlina60

My husband’s pain is getting worse everyday. He used to go to the gym 3/4 times a week until this past November. He used to be a runner and very fit. Now he can barely get out of bed. His pain is constant. We have had a PET scan and a recent thoracic MRI. PET shows no bone issues. Will get the MRI results tomorrow. I’ve read that multiple myeloma can create excessive back pain and bone pain. I’m asking the GP for a referral for a bone marrow biopsy for him. I started getting high fevers and horrible bone pain about 4 years ago and a bone marrow biopsy determined I have chronic lymphocytic leukemia. So I’m trying to figure out if another form of cancer could be the culprit for the back pain.

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@miracle95 Hi and welcome to Mayo Connect. I am so sorry to hear about your husband's back pain. Hopefully tomorrow's MRI will shed some light on why. I have a PNET that has spread to my liver and bones. I do not get back pain from the cancer in my bones even though it was present in my spine on a few scans. I did have back surgery over 25 years ago, so I understand back pain. Has he tried any stretching or physical therapy to help with the pain?

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miracle95 | @miracle95 | May 4 9:59pm
In reply to @tomrennie "@miracle95 Hi and welcome to Mayo Connect. I am so sorry to hear about your husband's..." + (show)
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@miracle95 Hi and welcome to Mayo Connect. I am so sorry to hear about your husband's back pain. Hopefully tomorrow's MRI will shed some light on why. I have a PNET that has spread to my liver and bones. I do not get back pain from the cancer in my bones even though it was present in my spine on a few scans. I did have back surgery over 25 years ago, so I understand back pain. Has he tried any stretching or physical therapy to help with the pain?

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@tomrennie

Yes. He went through some PT and went to the gym 3-4 times a week doing mostly stretching exercises used during his PT. We hope to get some answers as to whether cancer plays a part in this back pain or whether it is related to a form of arthritis that is weakening the vertebrae’s. Thank you for responding.

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Turkey, Volunteer Mentor | @tomrennie | May 6 10:15am
In reply to @miracle95 "@tomrennie Yes. He went through some PT and went to the gym 3-4 times a week..." + (show)
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@tomrennie

Yes. He went through some PT and went to the gym 3-4 times a week doing mostly stretching exercises used during his PT. We hope to get some answers as to whether cancer plays a part in this back pain or whether it is related to a form of arthritis that is weakening the vertebrae’s. Thank you for responding.

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@miracle95 Seems like you folks are doing everything that you can to alleviate the pain. I have arthritis in my shoulders that got a lot more painful during my treatment. No medical correlation between the increased arthritis pain and the cancer was presented, but I have my suspicions. Let us know if you find anything out ok?

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nannybb | @nannybb | 6 days ago
In reply to @barbjowilliams "Have you heard of " bare - Baked Crunchy " ....flavors are (simply Banana Chips or..." + (show)
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Have you heard of " bare - Baked Crunchy " ....flavors are (simply Banana Chips or Crispy Reds - apple chips....also I've gotten Natures Turn...Freeze - Dried Peach Crisps. Hope this helps....Hugs !

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@barbjowilliams Where have you found these to purchase? I've never heard of them, but am interested.

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mmar2025 | @mmar2025 | 5 days ago

After first PRRT session along with a corresponding injection of lanreotide, I was completely blocked up for days. The last alternative was what is known as a bowel prep (for a colonoscopy). Speak with your doctor first, but I tried everything they told me before this and none of it worked. It consists of an entire bottle of Miralax and two bottles of Gatorade consumed within an hour. Not pretty, but it worked. Then be religious with Miralax afterwards to keep it moving. So far, so good. Again, clear it with your physician.

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