1. < Neuroendocrine Tumors (NETs)

Questions Regarding Results after PRRT Treatment

Posted by markmark007 @markmark007, Dec 17, 2023

My wife completed her fourth PRRT treatment in late August 2023. (SPEC scans were done in conjunction with PRRT treatments)
She is scheduled in early January 2024 for Cu64 dotatate / PET- CT procedure.
Note 1: she had a Ga68 dotatate / PET - CT on 02/01/2023.
Note 2: she is concerned about possible side effects of radiation use in scans - too much radiation.
Note 3: we are communicating the following items with her doctor, it is also beneficial to receive experiences from others.
Note 4: We understand the differences in half-life of these radiotracers.
1. Is this a typical post PRRT procedure?
2. What other procedures / scans have been used?
3. Should the same radiotracer be used for each scan?
4. Can the radiological reports from these two scans be effectively compared (e.g. Cu64 vs. Ga68) given the difference in radiotracers?

We appreciate receiving any of your comments / experiences.
Many thanks,
Mark

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kwan | @kwan | May 1 10:13pm
In reply to @lu7 "I had PRRT for metastatic tumors in my liver. The plan is no treatment until they..." + (show)
@lu7

I had PRRT for metastatic tumors in my liver. The plan is no treatment until they start growing again. The PRRT did shrink them a bit. CT scans every three months.

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@lu7 thanks for your response. Is yours Grade 1 or 2 ? My son's grade 2.

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1 reply
lu7 | @lu7 | May 1 10:49pm
In reply to @kwan "@lu7 thanks for your response. Is yours Grade 1 or 2 ? My son's grade 2." + (show)
@kwan

@lu7 thanks for your response. Is yours Grade 1 or 2 ? My son's grade 2.

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Grade 2. My Whipple went well but Mets to the liver in about a year. PRRT went really well. 6rounds. Shrinkage looks small to me. Still very visible. But my doc is over the moon with it. We agree probably start growing again in a year or so. And we will hit them again. Or maybe something better! I'm pretty optimistic.

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2 replies
phyllisden | @phyllisden | May 1 11:50pm
In reply to @kwan "We had a consultation with a NET oncologist He recommended taking Octreotide as he had patients..." + (show)
@kwan

We had a consultation with a NET oncologist He recommended taking Octreotide as he had patients who have been on the medication for more than 10 years. Our appointment with the radiologist is only towards the month end, so more waiting.

I wonder what other patients have as follows up after their treatment with PRRT ? Any one had radiation on the pancreas tumor?

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Kwan, I had PRRT at Mayo in Phoenix from April - October 2021 for various non-resectable tumors ( i.e. one in my stomach) and I have continued on Octreotide LAR every 28 days (which I had started in April 2018) after my first surgery to remove a 2 cm tumor
and 10" of my small intestine. I had another one and 11" of my large intestine removed in 2019.
Both the oncologists at Mayo and NM encouraged me to do so.
So far my scans have shown that my disease is stable and the tumors are considered "non-functioning". For me, it seemed like a way to "lock in" the effects of the PRRT. So far, so good.

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kwan | @kwan | May 2 7:45am
In reply to @lu7 "Grade 2. My Whipple went well but Mets to the liver in about a year. PRRT..." + (show)
@lu7

Grade 2. My Whipple went well but Mets to the liver in about a year. PRRT went really well. 6rounds. Shrinkage looks small to me. Still very visible. But my doc is over the moon with it. We agree probably start growing again in a year or so. And we will hit them again. Or maybe something better! I'm pretty optimistic.

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@lu7 , hope PRRT will keep your mets at bay for more than a year.
Good luck and all the best

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1 reply
kwan | @kwan | May 2 7:56am
In reply to @phyllisden "Kwan, I had PRRT at Mayo in Phoenix from April - October 2021 for various non-resectable..." + (show)
@phyllisden

Kwan, I had PRRT at Mayo in Phoenix from April - October 2021 for various non-resectable tumors ( i.e. one in my stomach) and I have continued on Octreotide LAR every 28 days (which I had started in April 2018) after my first surgery to remove a 2 cm tumor
and 10" of my small intestine. I had another one and 11" of my large intestine removed in 2019.
Both the oncologists at Mayo and NM encouraged me to do so.
So far my scans have shown that my disease is stable and the tumors are considered "non-functioning". For me, it seemed like a way to "lock in" the effects of the PRRT. So far, so good.

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@phyllisden
Glad to know the combination of PRRT with Octreotide have produced stable result for you. Very encouraging. Was Octreotide LAR able to shrink the tumour in your stomach over the years ?

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phyllisden | @phyllisden | May 2 9:55am
In reply to @kwan "@phyllisden Glad to know the combination of PRRT with Octreotide have produced stable result for you...." + (show)
@kwan

@phyllisden
Glad to know the combination of PRRT with Octreotide have produced stable result for you. Very encouraging. Was Octreotide LAR able to shrink the tumour in your stomach over the years ?

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Octreotide LAR is technically designed to control to symptoms of carcinoid (diarrhea, flushing, nausea, etc) which it basically does. Some of the tumors have shrunk slightly and their intensity has decreased. So they're pretty quiet. And not growing and spreading. I'll take it!

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lu7 | @lu7 | May 2 9:53pm
In reply to @kwan "@lu7 , hope PRRT will keep your mets at bay for more than a year. Good..." + (show)
@kwan

@lu7 , hope PRRT will keep your mets at bay for more than a year.
Good luck and all the best

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Very likely much longer!! Thank you!

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kwan | @kwan | May 4 8:40am
In reply to @lu7 "Grade 2. My Whipple went well but Mets to the liver in about a year. PRRT..." + (show)
@lu7

Grade 2. My Whipple went well but Mets to the liver in about a year. PRRT went really well. 6rounds. Shrinkage looks small to me. Still very visible. But my doc is over the moon with it. We agree probably start growing again in a year or so. And we will hit them again. Or maybe something better! I'm pretty optimistic.

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@lu7 , hi I wonder why you can have 6 rounds of PRRT. Are they all at full dose? Our doctor will not let us have more round. He said may be in a couple of years time.

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