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@kwan

@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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Replies to "@kjstein Thanks for sharing your experience. It makes going forward with the treatment more optimistic. Is..."

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!