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Hi, everyone, my name is Michael Dube I was diagnosed a year ago with LEMS and Small cell lung cancer. My cancer is in remission, but my LEMS is not. I currently take the IVIG. the doctor ordered another IV Rituxan. i already took it twice this month of July 2022. This second iv made me sick at my doctors appointment. when i arrived, I headed to the bathroom and got sick. She explained it was from the Rituxan iv on Friday, and this was the following Friday. I still take the ivig. I guess we are waiting for something to put this into remission. How long did it take others to get to remission. What does remission look like? I walk, but so many things have changed. sorry I did not reach out before. it’s like a day by day thing, i am tired a lot. frustrated and unsure of what to expect.
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Hello Michael. I am sorry to hear that you are dealing with these issues. You did not mention whether or not you are on medication for LEMS. The chemo and the Rituxan are more for your cancer than for LEMS, although it has recently been discovered that Rituxan can make a difference too. I find it unusual that you got sick from Rituxan. I have lymphoma and since 2004 I have had 5 rounds of Rituxan treatments, 4 sessions each time, and I have never been sick from it. I am not a doctor, but I’ve been told that although there is no cure for LEMS it can be managed with medication. The drug of choice is Firdapse. (Amifampridine) This drug has saved my life. 2 years ago I was in a wheelchair and I couldn’t stand up long enough to brush my teeth. It took about two weeks to find the correct dosage of Firdapse, but it has given me my life back. I can walk, stand up, take a shower, although I still have to be careful because LEMS can cause mobility issues. Being tired is also a symptom of LEMS. You need to stay hydrated and get plenty of rest. There is good information about Lambert-Eaton online that can help you understand the disease and what to expect. And continue to access this forum. You’ll find that your symptoms and concerns are shared by many. Best wishes to you.
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