1. < Neuroendocrine Tumors (NETs)

Any one with Neuroendocrine tumors getting the shot once a month?

Posted by amygirl @amygirl, Dec 23, 2024

I have heard there is side effects to the once a month shot( unsure of the name) what has any one experienced?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

plbyates | @plbyates | Dec 26, 2024
In reply to @catalinaharley752 "I’ve been getting two injections of 40 milligrams every 28 days for the last 3 years...." + (show)
@catalinaharley752

I’ve been getting two injections of 40 milligrams every 28 days for the last 3 years. Dr says probably the rest of my life… not fun but it does help control the tremors and flushing. The diarrhea not so much.

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My husband gets the sandostatin shot every 28 days and is also taking xermelo three times a day for the diarrhea. Xermelo has definitely helped for the diarrhea.

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1 reply
amygirl | @amygirl | Dec 26, 2024
In reply to @plbyates "My husband gets the sandostatin shot every 28 days and is also taking xermelo three times..." + (show)
@plbyates

My husband gets the sandostatin shot every 28 days and is also taking xermelo three times a day for the diarrhea. Xermelo has definitely helped for the diarrhea.

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Would any over the counter anti diarrhea help? On a daily bases?

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2 replies
pavlina60 | @pavlina60 | Dec 27, 2024
In reply to @vinnie694 "I had the same experience with blood sugar rising.." + (show)
@vinnie694

I had the same experience with blood sugar rising..

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Me, too!

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docoltun | @docoltun | Dec 29, 2024

husband has been getting lenreotide every 28 days for 2 years. doesn't like the injection tho chromogranin numbers normal, tumor growth or metasticize non-existant. Life goes on with no other related side effects

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plbyates | @plbyates | Dec 30, 2024
In reply to @amygirl "Would any over the counter anti diarrhea help? On a daily bases?" + (show)
@amygirl

Would any over the counter anti diarrhea help? On a daily bases?

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He tried everything. Xermelo is the only medicine that worked.

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tgsenn70 | @tgsenn70 | Dec 31, 2024
In reply to @bluebelle "Hi! I have been receiving Octreotide injections once a month for about a year now. For..." + (show)
@bluebelle

Hi! I have been receiving Octreotide injections once a month for about a year now. For me, the first few months caused some fatigue but it’s hard to say if it is from the shots or the cancer itself. I am stage 4 and my cancer has metastasized to my liver. I recently finished 4 rounds of Lutathera radiation in conjunction with the shots. I haven’t really noticed any ill effects of the shots personally and I will be receiving them every month for the rest of my life. I hope this helps:) Prayers and well wishes for you…

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My husband was diagnosed with a NET a year ago. His doctor has only prescribed sandostatin (hope I am spelling that correctly). Never even really mentioned radiation. I know it does depend on the individual’s specific circumstances, but I am just wondering if maybe we should inquire about it since that seems to be pretty common in others who have the same diagnosis. Can you share any additional information that might help us?

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1 reply
Sherry | @bluebelle | Jan 1 9:10am
In reply to @tgsenn70 "My husband was diagnosed with a NET a year ago. His doctor has only prescribed sandostatin..." + (show)
@tgsenn70

My husband was diagnosed with a NET a year ago. His doctor has only prescribed sandostatin (hope I am spelling that correctly). Never even really mentioned radiation. I know it does depend on the individual’s specific circumstances, but I am just wondering if maybe we should inquire about it since that seems to be pretty common in others who have the same diagnosis. Can you share any additional information that might help us?

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Hi! I’m so sorry to hear about your husband’s diagnosis. I believe in asking as many questions as possible and finding out as much as you can about this horrible disease. I think in order to receive Lutathera there are some criteria that the tumors/treatments must meet and what stage the cancer is at. I am stage 4 and the cancer has metastasized to my liver so the Octreotide wasn’t working alone. I would definitely ask his oncologist about this newer treatment option. Until then, best wishes and prayers to you both for a healthy, healing new year ahead!

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1 reply
tgsenn70 | @tgsenn70 | Jan 2 10:24am
In reply to @bluebelle "Hi! I’m so sorry to hear about your husband’s diagnosis. I believe in asking as many..." + (show)
@bluebelle

Hi! I’m so sorry to hear about your husband’s diagnosis. I believe in asking as many questions as possible and finding out as much as you can about this horrible disease. I think in order to receive Lutathera there are some criteria that the tumors/treatments must meet and what stage the cancer is at. I am stage 4 and the cancer has metastasized to my liver so the Octreotide wasn’t working alone. I would definitely ask his oncologist about this newer treatment option. Until then, best wishes and prayers to you both for a healthy, healing new year ahead!

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Sherry,
Thank you, andI wish the same well wishes for you! 🙏🏻

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rit333 | @rit333 | Mar 27 3:47pm
In reply to @bluebelle "Hi! I have been receiving Octreotide injections once a month for about a year now. For..." + (show)
@bluebelle

Hi! I have been receiving Octreotide injections once a month for about a year now. For me, the first few months caused some fatigue but it’s hard to say if it is from the shots or the cancer itself. I am stage 4 and my cancer has metastasized to my liver. I recently finished 4 rounds of Lutathera radiation in conjunction with the shots. I haven’t really noticed any ill effects of the shots personally and I will be receiving them every month for the rest of my life. I hope this helps:) Prayers and well wishes for you…

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Sherry, your experience sounds exactly like mine. I have been getting injections of octreotide every 4 weeks, and also went to memorial Sloan Kettering for 4 infusions of lutathera. Except for minor fatigue, and would never know that I have neuroendocrine cancer in my pancreas that has spread to o my liver.

How are you doing?

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billbo | @billbo | Mar 28 10:10am

I was diagnosed in Jan. with pancreatic tumors in the tail of my pancreas that has spread to parr of liver. I have had 2 injections of Lanreotide with 1 more to go and then reassessment with CT scan. I feel normal with good energy and appetite etc. The only symptoms I seem to have related to the Nets is an itchy body rash. Has anyone heard of this? I'm seeing a dermatologist also but nothing conclusive yet.

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