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a complicated MG situation

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Old 11-01-2019, 10:39 PM   #1
gr8ful
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Join Date: Feb 2013
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Default a complicated MG situation

All,
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
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Old 11-02-2019, 01:25 PM   #2
Stellatum
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I just wanted to say I'm so sorry to hear about your situation.

Abby
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