Octreotide Injections - Skipping One or More?

Thanks for sharing -
God Bless you!!
Mark

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@kjstein
Thanks for sharing your experience. It makes going forward with the treatment more optimistic. Is the shrinkage more visible from ctscan and not from petscan dotatate?
My son is following the Mediterranean diet. He tries to avoid beef which to me is a good source of protein to help with blood count.
All the best to you.

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@phyllisden
Thanks for sharing your experience. If PRRT helps to " stabilise the disease" in my son's case, it's one big step forward.
Do you avoid eating beef?

Best wishes to you.

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Mayo did a dotatate scan about 4 months after completion of PRRT that showed significant shrinkage--my oncologist said it was best to wait 2-4 months after completion to see the effect as they know it keeps working for several months. Subsequent scans (both dotatate and CT/PET) have shown continued lower levels of shrinkage and the last test showed stable size from previous test and no new or worsening disease.

Related to diet--after meeting with a dietician, I asked my oncologist about diet as it was recommended that I increase protein. I specifically asked about red meat as I too have been avoiding it. The advice was to consider adding very lean beef or pork loin (organic and grass fed if possible) only if you want to add it--to help provide nutrients that are hard to get in fish and chicken and that might help with blood count. Lean because fat is often difficult to tolerate for NETS patients. I'm experimenting with adding about once a week to see what happens. Otherwise, I too eat most a Mediterranean diet with modifications for anything that causes digestive problems!

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Did you read something or did someone advise your son against eating beef? I'm not a doctor or a dietician who would be your best source of information, but everything I've read over the years focuses on eating a healthy diet while avoiding foods that do not agree with you. So, yes, if I want a good hamburger, I eat one. I lost 21" of my intestines (small and large) so no spicy nor creamy foods. I attended a Zoom conference about neuroendocrine tumors and the general consensus was you can eat whatever you want, just try to make it healthy. I admit, that's something I do need to work on.
One last thought - protein is the word. We forget there are other forms of protein other than beef so maybe that would be a good place to start some research. (Salmon, cheese, etc). I'm sure his doctor would make a referral to a dietician if you all would like to do that.
Good luck!

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Did you read something or did someone advise your son against eating beef? I'm not a doctor or a dietician who would be your best source of information, but everything I've read over the years focuses on eating a healthy diet while avoiding foods that do not agree with you. So, yes, if I want a good hamburger, I eat one. I lost 21" of my intestines (small and large) so no spicy nor creamy foods. I attended a Zoom conference about neuroendocrine tumors and the general consensus was you can eat whatever you want, just try to make it healthy. I admit, that's something I do need to work on.
One last thought - protein is the word. We forget there are other forms of protein other than beef so maybe that would be a good place to start some research. (Salmon, cheese, etc). I'm sure his doctor would make a referral to a dietician if you all would like to do that.
Good luck!

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Sorry to hear about this -
1, What reason(s) did doctor recommended stopping the injections?
2. Did the doctor's recommendation make sense to you? - I believe this important as you are the final decision maker for your health. Do you need additional explanation?
3. Do you have additional carcinoid syndrome symptoms?
4. Do you have any thoughts about getting a second opinion?
Note: I am not a trained medical professional - the above are the result of our own (wife & my) experiences.
All the best to you,
Mark

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