1. < Neuroendocrine Tumors (NETs)

Should I go to the ER? I’m sicker than I’ve ever been.

Posted by jt13 @jt13, Jul 2, 2023

I’ve been sick- nausea, extreme diarrhea, some vomiting, and a persistent migraine for 12 days. Everything goes straight through me. I can’t even keep water, biolyte, or ginger ale on my stomach for more than a couple of minutes. I was diagnosed with NETs of the appendix last year after 4 months of similar symptoms that would come and go without warning. It was surgically removed along with my appendix about 14 months ago. I’ve never been this consistently ill for so long at one time. I’ve been to urgent care, but got very little relief from the shots and meds they prescribed.

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

Zebra | @californiazebra | Jul 2, 2023

Yes! Sorry you're so sick! Are you even sure it's from the NETs and not a virus? In either case, you need to see someone right away because diarrhea for that long can make you very dehydrated and be dangerous. They may need to give you IV fluids.

Long term: If this sickness is from NETs, maybe you have carcinoid syndrome? Maybe something like lanreotide or octreotide injections could help? Aside from being dangerous, it's a serious quality of life issue you're having as you know. Are you seeing a team of NETs specialists?

Go get help and then answer.

REPLY
1 reply
kim1965 | @kim1965 | Jul 3, 2023

The answer is yes you need to be seen by your NET specialist if you have one or your Dr. You are working with in the past year. Not tomorrow, today please.

REPLY
ce1b | @ce1b | Jul 3, 2023

Yes get yourself in ASAP. I would have had that visit after 3 days as you described. None of us are superhuman, self preservation should be your focus cancer or not.
You are a valuable part of this world even with your illness.

Be blessed and know you will be in my prayers

CEB

REPLY
michellesimpson10 | @michellesimpson10 | Jul 4, 2023

I’m praying for you and hope you went to the ER and feeling better 💜💜💜💜

REPLY
badi | @badi | Jul 5, 2023
In reply to @californiazebra "Yes! Sorry you're so sick! Are you even sure it's from the NETs and not a..." + (show)
@californiazebra

Yes! Sorry you're so sick! Are you even sure it's from the NETs and not a virus? In either case, you need to see someone right away because diarrhea for that long can make you very dehydrated and be dangerous. They may need to give you IV fluids.

Long term: If this sickness is from NETs, maybe you have carcinoid syndrome? Maybe something like lanreotide or octreotide injections could help? Aside from being dangerous, it's a serious quality of life issue you're having as you know. Are you seeing a team of NETs specialists?

Go get help and then answer.

Jump to this post

Hi
I agree, hubby is on the injection and it seems to help with the diarrhea. Although he is very sick/weak from the injection between 7 to 10 days AFTER the injection. His diarrhea and quality of life improve after those days.

This has been ongoing for 9 months now. I only realized after 6 months that the benefits from the injections outweigh the terrible effects.

REPLY
Please sign in or register to post a reply.