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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sbds | @sbds | Apr 11 10:05am
In reply to @sbds "My Husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid that spread to liver, lymph..." + (show)
@sbds

My Husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid that spread to liver, lymph nodes and bones in March of 2022. Surgery was done to remove primary tumor in small intestines with 5 ft of small intestines. Liver ablation and enucleated 30 liver lesions then. The Octreotide injection worked til January of 2023. Switched to Lanreotide didn’t work. PRRT was started in September of 2023 his ChromagrainA was 721 then and he completed his 4th cycle on March 8,2024 just got his ChromagrainA number 696. Pet Scan is Scheduled for June 2024. It did drop by a little. Has anyone have this after PRRT treatment is completed ?

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Did your husband have PRRT treatment?

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1 reply
lindabees | @lindabees | Apr 12 8:34am
In reply to @sbds "Did your husband have PRRT treatment?" + (show)
@sbds

Did your husband have PRRT treatment?

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No he hasn’t

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kwan | @kwan | Apr 12 8:43am
In reply to @markmark007 "kwan: My wife is scheduled for a PET Ga-68 dotatate/MR scan and a separate MRI with..." + (show)
@markmark007

kwan:
My wife is scheduled for a PET Ga-68 dotatate/MR scan and a separate MRI with and w/o contrast. It has been 7 months since completion 4 PRRT treatments which were well tolerated - the usual impact to blood counts occurred - will get current blood counts this week.
Based on our research there seems to be no "standard" for post - PRRT scans.
As the medical community often states, "it just depends".
Mark

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Thanks Mark for your prompt response. I agree the post PRRT treatment will depend on how one responds to the treatment. All we can do now is to wait for the scan and see how effective the treatment has been. Will see what the oncologist suggest and then seek for second opinions as well.
Good luck to us all.
Kwan

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 14 9:46am

Followers of this discussion may also be interested in these related discussions:
- High or Fluctuating Chromogranin A Level: What does it mean? https://connect.mayoclinic.org/discussion/chromogranin-a-level-was-539/

- PRRT for NETs: Questioning whether I should continue or not
https://connect.mayoclinic.org/discussion/prrt-for-nets/
- Interested in hearing people's experiences with PRRT
https://connect.mayoclinic.org/discussion/prrt-treatment/
- Questions about Blood Tests Results after PRRT treatment
https://connect.mayoclinic.org/discussion/post-prrt-blood-tests/

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kwan | @kwan | Apr 24 11:05am
In reply to @kwan "Hi Mark, hope PRRT worked well for your wife My son had an unsuccessful Whipple operation..." + (show)
@kwan

Hi Mark, hope PRRT worked well for your wife

My son had an unsuccessful Whipple operation last year and he was given 4 treatments of PRRT and is scheduled for a petscan soon. I'm anxious to find from this group what alternatives have been made available depending on how one responds to the treatment.

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My son finished his 4th treatment of PRRT in February and had his petscan Dotatate taken last week. The result is encouraging. His pNET has reduced from 6cm to 2.8 cm.
However we are at the crossroads as to decide on the treatment to follow.

According to the oncologist, the most aggressive approach is to have surgery to remove the tumor ( as this is the only one visible from the scan) but because he has gone thru an unsuccessful Whipple procedure last April, the experience was horrifying, the operation will not be as easy, besides the nearby lymph nodes removed showed they are infected.
The next alternative is to have radiation and in this regard, reference letter was written for my son to seek consultation from the radiologist.

Of course there is always the Octreotide LAR to fall back on.

In this sense, our oncologist doesn't want to commit himself. And we shall seek a second opinion.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 24 11:39am
In reply to @kwan "My son finished his 4th treatment of PRRT in February and had his petscan Dotatate taken..." + (show)
@kwan

My son finished his 4th treatment of PRRT in February and had his petscan Dotatate taken last week. The result is encouraging. His pNET has reduced from 6cm to 2.8 cm.
However we are at the crossroads as to decide on the treatment to follow.

According to the oncologist, the most aggressive approach is to have surgery to remove the tumor ( as this is the only one visible from the scan) but because he has gone thru an unsuccessful Whipple procedure last April, the experience was horrifying, the operation will not be as easy, besides the nearby lymph nodes removed showed they are infected.
The next alternative is to have radiation and in this regard, reference letter was written for my son to seek consultation from the radiologist.

Of course there is always the Octreotide LAR to fall back on.

In this sense, our oncologist doesn't want to commit himself. And we shall seek a second opinion.

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Congratulations to your son on the success of the treatment and the reduction in size of the NET. Seeking a second opinion is a good thing at this time, @kwan. If your son is not currently working with a NET specialist, I'd suggest that the second opinion be with a NET specialist.

You mentioned that your son had an unsuccessful Whipple procedure last April. Can you explain a bit about why it was unsuccessful? Was it the location or the size of the NET?

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1 reply
kwan | @kwan | Apr 24 10:00pm
In reply to @hopeful33250 "Congratulations to your son on the success of the treatment and the reduction in size of..." + (show)
@hopeful33250

Congratulations to your son on the success of the treatment and the reduction in size of the NET. Seeking a second opinion is a good thing at this time, @kwan. If your son is not currently working with a NET specialist, I'd suggest that the second opinion be with a NET specialist.

You mentioned that your son had an unsuccessful Whipple procedure last April. Can you explain a bit about why it was unsuccessful? Was it the location or the size of the NET?

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Hi Teresa,
Thanks for your prompt response. The last Whipple was not successful because of tumor wrapping around blood vessels. The doctor removed 2 nearby lymph nodes and they were found to be infected too. It was a very painful experience.

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1 reply
kim1965 | @kim1965 | Apr 25 5:15am

100% agree with Theresa, most oncologist don’t have enough experience with NET. Ours suggested a multi-disciplinary team with a NET Specialist, to get the best possible team to help you beat NET. You got this!

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kwan | @kwan | May 1 12:09am

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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1 reply
lu7 | @lu7 | May 1 9:26am
In reply to @kwan "Hi Teresa, Thanks for your prompt response. The last Whipple was not successful because of tumor..." + (show)
@kwan

Hi Teresa,
Thanks for your prompt response. The last Whipple was not successful because of tumor wrapping around blood vessels. The doctor removed 2 nearby lymph nodes and they were found to be infected too. It was a very painful experience.

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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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