1. < Neuroendocrine Tumors (NETs)

I am one year out with my diagnosis just finished 4th round of prrt..

Posted by nevinrbaskin @nevinrbaskin, Jan 10 7:54am

It’s been a long path, years of flushing, stomach cramps and diarrhea that came and went with no warning or explanation. Had a resection of my small bowel and hernia surgery finally on the mends. Just finished 4th round of PRRT. I am feeling nauseous daily and fatigued. I try and live in the moment as I can get lots of anxiety from the uncertainty surrounding my health. I found this thread and reading some messages sent me off the edge emotionally. I am fine. It’s just hard to get used to the emotional roller coaster.

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

nana120 | @nana120 | Jan 10 9:46am

I am about the same one year out from diagnosis with absolutely no treatment from the last 5 months. This is not because I’m in remission, but because 8 months of lanreotide injections, 3 months of Temozolomide, and a bland embolization none of which provided the results hoped for. I am now scheduled for a mapping for Y90 and my anxiety is off the charts. I asked my IR doctor what the next step would be if this, too, did not work. She said we would cross that bridge when we got to it. Just know you are not alone and we zebras all have to hold each other up. My Mother would have told me “this, too, shall pass” and I know it will.

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2 replies
nevinrbaskin | @nevinrbaskin | Jan 10 10:47am

I pray that you find the strength until you get the right treatment and that your treatment will come soon for you. This too shall pass, my mom always said “where there is faith there is hope” and I can hear her words often….

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vinnie694 | @vinnie694 | 6 days ago

Are you getting monthly injections? I started with Lanreotide, that didn’t help the flushing, I was going through flushing 20 - 25 times a day.. Switched to ocreotide, and the flushing has stopped.. I am also scheduled for my 2 nd PRRT Treatment this month… I fully understand the emotional roller coaster..

REPLY
1 reply
pavlina60 | @pavlina60 | 6 days ago
In reply to @nana120 "I am about the same one year out from diagnosis with absolutely no treatment from the..." + (show)
@nana120

I am about the same one year out from diagnosis with absolutely no treatment from the last 5 months. This is not because I’m in remission, but because 8 months of lanreotide injections, 3 months of Temozolomide, and a bland embolization none of which provided the results hoped for. I am now scheduled for a mapping for Y90 and my anxiety is off the charts. I asked my IR doctor what the next step would be if this, too, did not work. She said we would cross that bridge when we got to it. Just know you are not alone and we zebras all have to hold each other up. My Mother would have told me “this, too, shall pass” and I know it will.

Jump to this post

Absolutely, @nana120!
I hear my oncologist saying the same - " we will cross that bridge when we get to it"
Hugs!

REPLY
kevinmonroemi | @kevinmonroemi | 6 days ago
In reply to @nana120 "I am about the same one year out from diagnosis with absolutely no treatment from the..." + (show)
@nana120

I am about the same one year out from diagnosis with absolutely no treatment from the last 5 months. This is not because I’m in remission, but because 8 months of lanreotide injections, 3 months of Temozolomide, and a bland embolization none of which provided the results hoped for. I am now scheduled for a mapping for Y90 and my anxiety is off the charts. I asked my IR doctor what the next step would be if this, too, did not work. She said we would cross that bridge when we got to it. Just know you are not alone and we zebras all have to hold each other up. My Mother would have told me “this, too, shall pass” and I know it will.

Jump to this post

Be positive about the the y90 I had it after 7 months of captem that didn’t work and it is still working over 2 years later! It has a high success rate

REPLY
nana120 | @nana120 | 5 days ago
In reply to @vinnie694 "Are you getting monthly injections? I started with Lanreotide, that didn’t help the flushing, I was..." + (show)
@vinnie694

Are you getting monthly injections? I started with Lanreotide, that didn’t help the flushing, I was going through flushing 20 - 25 times a day.. Switched to ocreotide, and the flushing has stopped.. I am also scheduled for my 2 nd PRRT Treatment this month… I fully understand the emotional roller coaster..

Jump to this post

As I said there have no treatments for the past 5 months. I did have Lanreotide for 8 months. Although I was not having flushing, it did not stop growth of the liver tumor.

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