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LIVING WITH LEMS AND CANCER
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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4 Replies
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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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Yo tambien tuve cancer de colon, previo al diagnóstico del lems, y aunque era agresio salí pero del lems a pesar de la medicación que en principio te ayuda a encontrarte mejor, al cabo de un tiempo meses o años, mis músculos y mis sistemas motores van cediendo. Las cervicales, los musculos lumbares ya no sujetan la protesis de tanta operación, el sistema motor del esofago no va bien, vivo atragantada tanto cuando tomo agua, comida o medicinas, tengo el musculo dercho ocular caido y tengo muchas recaidas con los síntomas más recurrentes cuando concurren tanto temperaturas altas, o bien muy frias, calambres hasta las pestañas, veo doble, boca seca color blanco en las comisuras, con temperatura corporal no acorde con ninguna normalidad y paso de dar un paso a estar completamente rigida sin movilidad ninguna. Vuelvo a tener crisis epilepticas por el firdase pero no pueden bajármelo y pierdo alguna vez el sentido. Período difícil.
I also had colon cancer, prior to the diagnosis of lems, and although I was aggressive I left the lems despite the medication that in principle helps you feel better, after a while months or years, my muscles and motor systems give way. The cervical muscles, the lumbar muscles no longer hold the prosthesis of so much operation, the engine system of esophagus is not going well, I live choked so much when I drink water, food or medicines, my eye der right muscle has fallen and I have many relapses with the most recurrent symptoms when there are so many high temperatures, or very cold I have epileptic seizures from firdase again but they can’t lower it and I ever lose my sense. Difficult period.
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I’m taking FIRDAPSE for my LEMS
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This is good news! We hope Firdapse works well for you and lessens your symptoms.
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