Go Back   NeuroTalk Support Groups > >

Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

a complicated MG situation

Thread Tools Display Modes
Old 11-01-2019, 10:39 PM   #1
Junior Member
Join Date: Feb 2013
Posts: 80
Default a complicated MG situation

I've had MG for 6 years. I do pretty well with 10mg prednisone and 3000mg of mycophenolate and 1200mg of Soliris every two weeks. No complaints.....I feel lucky.

Six weeks ago I was diagnosed with Merkel Cell Carcinoma (MCC). It is rare, aggressive type of skin cancer often caused by immunosuppression. It has a a survival rate of ~2 years for a normal person. The literature says you can't fight this type of cancer with a weakened immune system. The one year survival rate for immunosuppressed patients is about 25% but most die in 6 months.

Needless to say, I'm not very happy about this.

I'm willing to be in a weakened state while I treat the Merkel problem but I don't know what I need to do to have a decent chance of fighting the cancer AND preventing a MG meltdown.

My doc is going to taper down the prednisone and mycophenolate. I feel if I take any at all, I'll be immunocompramized and not be able to beat the cancer.

Is there anyone in this group who has dealt with this situation? Does anyone know how long it takes to build up a decent immune system after discontinuing MG treatment. Because of my MG meds, the cancer continues to spread. I've had surgery and will receive radiation but this weakened immune system needs to be fixed if I am to have at least a 50/50 chance.

Thanks for reading. Good luck to all.

Last edited by gr8ful; 11-01-2019 at 10:46 PM. Reason: added a bit
gr8ful is offline   Reply With Quote
Old 11-02-2019, 01:25 PM   #2
Senior Member
Join Date: Feb 2010
Posts: 1,212

I just wanted to say I'm so sorry to hear about your situation.

Stellatum is offline   Reply With Quote

cancer, immune, rate, system, weakened

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
complicated need help maryjane11 New Member Introductions 8 01-16-2014 05:37 PM
New here and it's complicated! LoopyDor New Member Introductions 4 07-18-2011 01:47 PM
too complicated gramE Layoffs, Unemployment and Worker's Compensation 0 02-05-2011 10:52 AM
Complicated CIPN javamom Peripheral Neuropathy 11 12-14-2009 10:46 AM
Complicated HSP (cerebellar involvement) color Neuromuscular 0 01-30-2008 07:51 PM

All times are GMT -5. The time now is 01:31 AM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.

Home - Top

Powered by vBulletin • Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2019 DragonByte Technologies Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2019 DragonByte Technologies Ltd.

All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy