1. < Neuroendocrine Tumors (NETs)
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Started PRRT treatment: Anyone experience tumor markers increasing?

Posted by rhb18 @rhb18, Feb 25 6:43pm

I had my first PRRT treatment in mid Jan and got my CgA blood work back today which shows an increase in my numbers. I was expecting a decrease. My oncologist said it’s not unusual for the numbers to go up after the treatment due to a tumor flare. Has anyone else experienced this? Thanks

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kevinmonroemi | @kevinmonroemi | Apr 4 3:03pm
In reply to @kevinmonroemi "@jessie59 I take esomeprazole 3 times daily Pepcid twice daily. Also take sultanate up to 4..." + (show)
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@jessie59 I take esomeprazole 3 times daily Pepcid twice daily. Also take sultanate up to 4 times daily. SBRT is pinpoint high dose proton beam radiation. I will be getting 3 -5 treatments every other day it was an easy treatment last time. Can’t see or feel any of it. MRI 3 months after wil let us know if it worked. It’s strange because sometimes side effects don’t show up 3-6 months later. Not sure I had any but I am very tired lately. I also have primary in the head of the pancreas. I had severe diarrhea until I started lanreotide. Do you have any symptoms for the Gastrin? What is your ki-67 do you have a multidisciplinary team?

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@kevinmonroemi I meant to say sulcrafate for ulcers 4 times a day

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Turkey, Volunteer Mentor | @tomrennie | Apr 4 4:14pm
In reply to @kevinmonroemi "@tomrennie Thanks Tom SBRT is high dose proton beam pin point radiation. No pain! treatment should..." + (show)
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@tomrennie Thanks Tom SBRT is high dose proton beam pin point radiation. No pain! treatment should last about 20 minutes can’t see it and can’t feel it I tolerated it well last time won’t know how it goes until next MRI

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@kevinmonroemi That actually doesn't sound too bad. I think most of us have been through worse. How far off does the scan have to be to see if it is working?

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Turkey, Volunteer Mentor | @tomrennie | Apr 4 4:15pm
In reply to @kevinmonroemi "@jessie59 I take esomeprazole 3 times daily Pepcid twice daily. Also take sultanate up to 4..." + (show)
Profile picture for kevinmonroemi @kevinmonroemi

@jessie59 I take esomeprazole 3 times daily Pepcid twice daily. Also take sultanate up to 4 times daily. SBRT is pinpoint high dose proton beam radiation. I will be getting 3 -5 treatments every other day it was an easy treatment last time. Can’t see or feel any of it. MRI 3 months after wil let us know if it worked. It’s strange because sometimes side effects don’t show up 3-6 months later. Not sure I had any but I am very tired lately. I also have primary in the head of the pancreas. I had severe diarrhea until I started lanreotide. Do you have any symptoms for the Gastrin? What is your ki-67 do you have a multidisciplinary team?

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@kevinmonroemi You just answered my question. Thanks.

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jessie59 | @jessie59 | Apr 6 1:41am
In reply to @kevinmonroemi "@jessie59 I take esomeprazole 3 times daily Pepcid twice daily. Also take sultanate up to 4..." + (show)
Profile picture for kevinmonroemi @kevinmonroemi

@jessie59 I take esomeprazole 3 times daily Pepcid twice daily. Also take sultanate up to 4 times daily. SBRT is pinpoint high dose proton beam radiation. I will be getting 3 -5 treatments every other day it was an easy treatment last time. Can’t see or feel any of it. MRI 3 months after wil let us know if it worked. It’s strange because sometimes side effects don’t show up 3-6 months later. Not sure I had any but I am very tired lately. I also have primary in the head of the pancreas. I had severe diarrhea until I started lanreotide. Do you have any symptoms for the Gastrin? What is your ki-67 do you have a multidisciplinary team?

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@kevinmonroemi, thank you so much for responding. Really feel for you. May I know is it too much to take Esomeprazole 3x daily & also Pepcid (Famotidine) as both manage the decrease on the amount of acid produced by the stomach? Will it not increase your Gastrin level in blood test results (thou PPI increases the number in Gastrin level)?
I actually have occasional full stomach pain since 2024 (now more frequent. I was diagnosed as Grade 1, Stage 1 (now surgeon said Stage 4). They are not able to perform endoscopy as it’s unreachable on the soft tissues. Oncologist mentioned unable to treat till they able to ascertain the lesion. Yes, my case is referred for multidisciplinary discussion when deemed necessary by both doctors.

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sophiarose | @sophiarose | Apr 6 7:42am

Yes it is normal
It happened to me
I did all 4 treatments and I have been stable now for 18 months
Best of luck

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rhb18 | @rhb18 | Apr 12 7:06am

Just to update I have recently had my second PRRT treatment and my CgA markers have now decreased by around 20%. My biggest side effect has been fatigue. It’s encouraging to head into the third treatment with more hope. I’ve read a few recent updates from people who have finished their PRRT treatment who have said their tumours have shrunk and/or stabilised for a number of years and they are living a good life. If anyone has an encouraging personal story about their PRRT success that they are happy to share I would love to read about it as Im finding it encouraging to focus on real-life positives ☺️

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zacharycat | @zacharycat | Apr 12 8:18am
In reply to @rhb18 "Just to update I have recently had my second PRRT treatment and my CgA markers have..." + (show)
Profile picture for rhb18 @rhb18

Just to update I have recently had my second PRRT treatment and my CgA markers have now decreased by around 20%. My biggest side effect has been fatigue. It’s encouraging to head into the third treatment with more hope. I’ve read a few recent updates from people who have finished their PRRT treatment who have said their tumours have shrunk and/or stabilised for a number of years and they are living a good life. If anyone has an encouraging personal story about their PRRT success that they are happy to share I would love to read about it as Im finding it encouraging to focus on real-life positives ☺️

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@rhb18 I read similar accounts before starting PRRT. Think the main determinant is grade, how many tumor cells are multiplying. Grade 1 and low level 2s can have long periods of stability, but grade 3 is faster and more aggressive. Within 6 months I needed surgery and am now on TKI (Cabometyx). The PRRT reduced the tumor substantially and made surgery easier.

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