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Octreotide Injections - Skipping One or More?

Neuroendocrine Tumors (NETs) | Last Active: Nov 27, 2023 | Replies (29)
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@hopeful33250

Hello @markmark007

This is a good question. Has your wife talked with her oncologist about the possible effects of skipping an injection? I'm also wondering if the injection was controlling any particular symptoms?

We have several members who have taken octreotide and I'm going to invite them to this discussion, @vinnie694 @sophiarose. Please know, however, the the best person to answer this question is your wife's doctor.

Will you post again when you get an opinion from her oncologist?

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Replies to "Hello @markmark007 This is a good question. Has your wife talked with her oncologist about the..."
sophiarose | @sophiarose | Nov 17, 2023

I stopped completely because it wasn’t working
And the side effects were out of control
I was told I could start up again
They only thing that happened to me as the medication left my system is I had very bad low sugar symptoms
I drank a lot of water OJ and ate chocolate

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markmark007 | @markmark007 | Nov 18, 2023

The oncologist does not think missing one injection will be detrimental.
Injections are a part of PRRT protocol as was determined by her care team. - not necessarily to control symptoms.
Many thanks for your response,
Mark

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vinnie694 | @vinnie694 | Nov 19, 2023

I have been on Octreotide for about 7 months, I haven’t missed an injection during that time, I try to look ahead when I’m going to be away and schedule accordingly. I have carcinoid syndrome and the Octreotide has kept the hot flashes away.. I don’t want to risk them coming back..

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triveraderubio | @triveraderubio | Nov 23, 2023

I have Malignant Neuroendocrine Tumors of the Lung and have been in treatment with Sandostatin LAR every 28 days since November 2022. It has helped with my coughing, and the tumors remain the same size. However, the side effects of Sandostatin LAR are significant, and I felt my body needed relief. I conferred with my Oncologist, and while he mentioned this treatment would be continuous, I skipped a dose under his supervision to see whether the side effects would subside. He suspects malabsorption and will treat it accordingly.
The side effects did reduce during the relief, except the constant coughing returned, and shortness of breath escalated. I have since then had two injections, and the side effects resurfaced. Sometimes, I do not know what is worse: the treatment’s side effects or the disease itself. Everyone is different, so what is affecting me may not be affecting anyone else.

I pray for everyone's improvement and strive to manage this journey.

Many Blessings.

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