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I wanted to thank all of you for your help and information about Cushing's. I was diagnosed with Ectopic Cushing's, Kulchitsky neuroendocrine tumor, carcinoid of the lung. I had been very ill with Cushing's symptoms and the cancer. In Sept. 2000 I had surgery to remove my upper right lobe of the lung and an egg-sized cluster of lymph nodes. That was followed by 7 weeks of radiation. The tumor was producing the ACTH, thus high cortisol. I was like a machine, insomnia, couldn't walk, concentrate, see straight, moon face, beard, loosing hair, face and neck rash, big fat stomach. I gained a lot of weight - up to 178 from 128. Dr. Vance insisted I get an octreotide scan, which would pick up any neuroendocrine type tumor.
Through God, my family, my friends, doctors and nurses and supportive people like you, I'm making it! I am down to 115 lbs. I am cancer free and have had no more Cushing's symptoms so I consider myself a survivor - 3 years and 2 months. I found out a lot about people and life and who really cares about me. Every day is a new gift of love from God. I'm working on publishing my day-to-day journal dealing with Cushing's and lung cancer to help others and give them hope. We're all survivors! After 10 years of misdiagnosis and one illness after another, I'm feeling human again. After 10 years of insomnia, I'm sleeping again. I eat better and I take better care of myself.
Right now, I am having problems with my lower back and leg weakness. I have difficulty sitting, standing, and walking. I continue to have many tests, like MRI's, X-rays, Cat scans, bone density, bone scans, PET scans, blood work and 24 hour urine. I'm still keeping contact with my oncologist, radiologist, and regular physician every few months to test for any changes. I have low potassium and because of pain from bulging discs and a vertebrae out of place in my back, I take Oxycoutin and Hydrocodone. I am on blood pressure medication again. My blood pressure could be elevated because of the pain or lowered potassium. I have been in physical therapy off and on over a year, which helps with the pain and helps strengthen my legs. I tried a chiropractor for a few months but didn't feel like it helped. I would really like to know if anyone else had problems with pain and leg weakness and what they did for it.
Every time I see Lance Armstrong race it inspires me to keep on going. I was walking up and down gorges and waterfalls last summer and tobogganing last winter, thus I consider my leg weakness another temporary thing to overcome. I still need your support and would love to support others. We can share our ups and downs. I saw three grandchildren be born, my son get married, my daughter get her associates degree and I came a great Aunt three times since my surgery. Three years ago I thought I would have been gone by now. Well - I'm still here and still going!!!
Anyone willing to share can write me.
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