hi, i had a thymectomy in november,had a few crisis afterward, but doing much better,now im suppossedto do radiation for thymoma.just wondering if any bodys gone through it and if it caused any problems with mg symptoms,i sure hate to go backwards,taking pred, mest. imuran..thanks

I'm very happy to hear you are doing better now, Gary.

I did not have thymoma, so I will be no help to you, but I wanted to let you know I'll be thinking of you. Best of luck on the radiation. Did your doc not let you know what to expect from the procedure? I'd call and ask them too.

Becky

Hi Gary,

I had thymectomy in May and radiation in August/Sept for the thymoma.

There're a couple of things to expect (they may or may not get you):

1. Radiation burn to the esophagus will make swallowing difficult. If you develop a sore throat or difficulty swallowing ask your oncologist for "magic mouthwash" (that's what the prescription was for and the label on the bottle called it magic mouthwash... pharmacists/oncologist where you are may call it something else) - this will coat the throat and helps a lot. They also use this to protect against / heal thrush which radiation therapy patients are prone to.

2. Radiation therapy will most likely (almost certainly) wear you out (it got me to the point of exhaustion.) You will probably want to be on at least mestinon while undergoing it. You will probably need a *lot* of rest - take naps, they help.

3. Radiation burns to the lungs can make you very susceptible to post treatment pneumonia - if you start coughing up anything get to your doc and get this treated right away. I landed in hospital for a couple of weeks with crisis because I ignored it when it began. I still have a persistent cough from the burns to my lungs but it is getting better now.

4. Radiation burns to the chest and back - this will be like a light sunburn. If you get it, let your oncologist know (mine gave me some zinc oxide cream for it). Your chest and back will be vulnerable to sunburns for the rest of your life where the radiation was focused, but this is minor. Just use sunscreen or wear a shirt.

As far as meds go - I only take mestinon for my MG.

HTH, ask if you have any other questions and I'll try to answer based on my experiences. Obligatory disclaimer: all people are unique and you may or may not be affected as I was

Cheers,

Brian

Hey Gary! I have never had radiation, but I know Brennan has, so he is an expert!

Hang in there and let usknow how you are!

Erin