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

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

I hope the PRRT has been working well for your wife. I'm part of a study at Mayo and recieved CT scans throughout the study. The treatment phase is complete and I will continue to have CT scans as follow up every few months. I did have the gallium PET scan prior to treatment choices. I'm sure your oncologist will explain the rationale for his choices. It's good that you ask questions and get answers. The anxiety of wondering and worries isn't good for her health and healing. My best wishes for you both.

REPLY
@lu7

I hope the PRRT has been working well for your wife. I'm part of a study at Mayo and recieved CT scans throughout the study. The treatment phase is complete and I will continue to have CT scans as follow up every few months. I did have the gallium PET scan prior to treatment choices. I'm sure your oncologist will explain the rationale for his choices. It's good that you ask questions and get answers. The anxiety of wondering and worries isn't good for her health and healing. My best wishes for you both.

Jump to this post

Your comments are sincerely appreciated. It is the kind of feedback / experience we need. We also understand that each patient is unique.
She did have a Ga68 PET scan prior to beginning treatment - sounds like just what you experienced.
My wife responded well to PRRT - she is currently scheduled with a PET /CT Cu
64 scan so we are trying to understand why that specific scan is needed - we are developing questions for her oncologist.

Many thanks again,
All our best to you,
Mark

REPLY

I’m afraid I can’t answer your question about the use of the same radiotracers for the ga or cu scans. However, over the 15 years of dealing with this, our specialists have always used mri for follow ups with dotatate scans only a couple of times a year. Dotatate identifies lesions. MRI is best for visualizing them and measuring them. MRI doesn’t use radiation so there’s that benefit, too.

REPLY

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.

REPLY

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

REPLY

My husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid tumor March,2022. He had surgery removed primary tumor plus 5 feet of small intestines. He had liver ablation removed 22 lesions plus 8 lesions removed. It also spread to lymph nodes and bones. He tried Octreotide injections til January 2023 and then found 6 tumors on liver again then switched to lanreotide injections. July 2023 CT scan showed too many lesions on liver to count. PRRT started in September,2023 4 cycles completed in March 8, 2024. His chromagrain A in September 2023 was 721 and now his Chromagrain A number is 696 after PRRT is completed have to wait til PET scan scheduled for June 12,2024. Since the Chromagrain A number didn’t increase. Has anyone had PRRT treatments

REPLY

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 ?

REPLY
@sbds

My husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid tumor March,2022. He had surgery removed primary tumor plus 5 feet of small intestines. He had liver ablation removed 22 lesions plus 8 lesions removed. It also spread to lymph nodes and bones. He tried Octreotide injections til January 2023 and then found 6 tumors on liver again then switched to lanreotide injections. July 2023 CT scan showed too many lesions on liver to count. PRRT started in September,2023 4 cycles completed in March 8, 2024. His chromagrain A in September 2023 was 721 and now his Chromagrain A number is 696 after PRRT is completed have to wait til PET scan scheduled for June 12,2024. Since the Chromagrain A number didn’t increase. Has anyone had PRRT treatments

Jump to this post

My wife just finished 4 PRRT treatments and are awaiting our PET scan on June 7th, The MRI after 2 treatments showed all tumors on liver were the same or smaller since start of treatments. What questions do you about PRRT? We got this!

REPLY

My husband did great with the PRRT 4 treatments. He never had any scans orMRI to check during treatment. My question is how high are ChromograninA numbers after treatment for example9/5/2023 Cga#710, PRRT treatment started9/25/2023, then on10/24/2023 CgA #721. Now on 4/8/2024 CgA #696. On the positive side his number did not go up and went down a little. His liver numbers are all normal.

REPLY
@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 ?

Jump to this post

My husband has a no functional pnet with negative blood work so I’m not as familiar with your situation but Indo know that Chromogranin A is easily affected by many things, namely PPI’s among other things, making it a less reliable test result to gauge what is going on. If however it has been reliable for your specific case in the past, this may not apply to you.

REPLY
Please sign in or register to post a reply.