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Mentor

New to Cytoxan (cyclophosphamide)—advice and help appreciated

Posted by Becky, Volunteer Mentor @becsbuddy, Oct 16, 2020

I am scheduled to begin Cytoxan next week and feel like I know nothing. I was an oncology nurse for the last 11years of my career, but... Can anyone tell me what their experience was like and what they wish they had known? I have an autoimmune disease, not cancer, and this is all so new and frightening. Can anyone help?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

mermaid7272 | @mermaid7272 | Jan 14, 2022

Becky-- My encephalopathy has returned. I am scared, disgusted, and horrified.
The doctor, a neurologist at a large hospital is setting up a IVIG treatment for me. I hope it will be soon, and also hope it will help.
Anyone here dealing with multiple returns of this vicious disease, does it ever stop?

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 15, 2022
In reply to @mermaid7272 "Becky-- My encephalopathy has returned. I am scared, disgusted, and horrified. The doctor, a neurologist at..." + (show)
@mermaid7272

Becky-- My encephalopathy has returned. I am scared, disgusted, and horrified.
The doctor, a neurologist at a large hospital is setting up a IVIG treatment for me. I hope it will be soon, and also hope it will help.
Anyone here dealing with multiple returns of this vicious disease, does it ever stop?

Jump to this post

@mermaid7272 I’m so sorry to hear this—it must be very frightening. Have you been diagnosed with a cause of the encephalopathy? You had said that you were tapering off of prednisone, is that correct? There are so many new autoimmune diseases being diagnosed—faster than doctors can learn how to treat them!
I really want you to go to this discussion group and read what other members have experienced.. Then you can post questions there
https://connect.mayoclinic.org/discussion/autoimmune-encephalopathy-anyone/
Maybe these members can help @tanap1 @techi @valm by telling you of their experiences and what has worked for them
Have you asked for a referral to a neuro- immunologist?

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 18, 2022
In reply to @mermaid7272 "Becky-- My encephalopathy has returned. I am scared, disgusted, and horrified. The doctor, a neurologist at..." + (show)
@mermaid7272

Becky-- My encephalopathy has returned. I am scared, disgusted, and horrified.
The doctor, a neurologist at a large hospital is setting up a IVIG treatment for me. I hope it will be soon, and also hope it will help.
Anyone here dealing with multiple returns of this vicious disease, does it ever stop?

Jump to this post

@mermaid7272 i know that your MRI is tomorrow. You are going to do just fine, i have complete faith in you! You’ve come a long way with this encephalopathy and you need some answers. Do your best to relax.
We’re all holding hands with you as you go through the MRI. I’ll send lots of good vibes! Becky

REPLY
1 reply
mermaid7272 | @mermaid7272 | Jan 18, 2022
In reply to @becsbuddy "@mermaid7272 i know that your MRI is tomorrow. You are going to do just fine, i..." + (show)
@becsbuddy

@mermaid7272 i know that your MRI is tomorrow. You are going to do just fine, i have complete faith in you! You’ve come a long way with this encephalopathy and you need some answers. Do your best to relax.
We’re all holding hands with you as you go through the MRI. I’ll send lots of good vibes! Becky

Jump to this post

No MRI, Becky, it is to be an IVIG at an Infusion center. But due to an complete mess up by the insurance center who was to have given permission, the procedure has been put off till everything is straightened out.
I went to my Neurologist's today, she said that hopefully this will never happen again--- the insurance center had a meltdown of their website and could not process any requests. I am petrified that I will go into a brain meltdown
before getting my infusion.
I really appreciate you support and thoughts, as few can understand this rare disease. Even the doc is mystified by it. Your messages mean a lot!

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