berkmi Posted February 23, 2016 Share Posted February 23, 2016 Hello! My name is Michelle & I'm new to the forums. I'm the primary caregiver for my husband who is fighting Limited Stage, SCLC with Lambert-Eaton Myasthenia Syndrome (LEMS). LEMS is a very rare disease which attacks only 3% of patients with SCLC and FORTUNATELY the way he was feeling was because of the LEMS, we know now. So I can actually say, I'm thankful he is one of the 3%! The LEMS had "activated" and he was unable to physically do anything! By trade, he was a commercial electrician, so he needed to function. He was first diagnosed with SCLC January of 2015, did the chemo and radiation, used CBD oil along with dietary changes. I know our family is very fortunate he is still so willing to fight! His PET scan in Aug. 2015 was negative for cancer. The week of Thanksgiving was the next scan, which showed 2 lymph nodes lighting up...so he has started all over (no Cistplatin or radiation this time), but Taxol for his chemo drug this time. Any positive stories or info I could share with him for life after this? Or caregiver tidbits? Thanks! Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 23, 2016 Share Posted February 23, 2016 Welcome here Michelle! After reading your post, I had to Google LEMS. I thought I had a tough row to hoe. I'm a non small cell squamous cell guy so I don't know how much of this tracks to small cell but I do know a thing or two about taxol. What do I know about cancer treatment? Cancer is persistent and I had to find a way to be more persistent. I didn't learn the more persistent required attitude until I was about 2 1/2 years into treatment. But I read about a guy who was fighting stage IV lung cancer in second line chemo who was swimming laps, walking the beach, playing with his kids, and enjoying life. I was depressed, bitching, moaning and complaining by comparison. He was experiencing what I now realize is the most important side effect of cancer treatment - extended life. He figured, if he chose treatment, he chose life and he was actively engaged in living it. I figured if he could do it, so could I. If I can do it, so can your husband. I've come to believe that my attitude towards treatment and outcomes is my most effective weapon in my fight with cancer. I started to believe I was going to survive and then believed I could do better, I could thrive. My mistake was letting cancer take over my life. Caregiver tidbit - coach him up in this regard. There is meaningful and productive life during and after cancer but one needs to decide to make it so. Stay the course. Tom berkmi, MaryTD777 and Sandra Cannon 3 Quote Link to comment Share on other sites More sharing options...
berkmi Posted February 24, 2016 Author Share Posted February 24, 2016 Tom, Thank you for your inspiring words! I do have to say my husband has had a positive, fighting, attitude since day one of his diagnosis. He is determined to be around for many years to come. Staying strong in NY, Michelle Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
MaryTD777 Posted February 27, 2016 Share Posted February 27, 2016 Michele, Sorry to meet this way. I gotta tell you, I think you may have the harder part in this sometimes. I know I would have had a hard time if it was my hubby instead of me. I wish I could offer you some bits of wisdom, but my cancer was a nsclc squamous cell. If you were my care giver I would ask you to be patient with any snapping I did since it was often just from feeling helpless and literally scared to death. That being said... when you need to blow off steam ~ be sure to remind him that you took, so he has to take too!! Understand that treatment is so VERY exhausting. Who would think that sitting around for hours with something dripping slowly into your arm/port would make you as tired as trying to grocery shop for every birthday & holiday dinner to be celebrated this year ~ in an hour ~ at 6pm ~ the Wednesday before Thanksgiving. Wishing you both all the best!! Mary Quote Link to comment Share on other sites More sharing options...
Sandra Cannon Posted April 16, 2016 Share Posted April 16, 2016 I hope your husbands treatment went well and things are going good for you both. Quote Link to comment Share on other sites More sharing options...
Sandra Cannon Posted April 16, 2016 Share Posted April 16, 2016 Tom, I need to get where you are. Im starting to work on the mental aspect of this all now. Good attitude you have there. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
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