Lung Cancer Support
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Non small cell adenoma carcinoma

Hi, I am new here and was diagnosed with NSC adenoma carcinoma lung cancer in 2013. I started off with carboplatin and alimta for 2 months, then switched to Xalkori for 7 months, Zykadia for 5 months and then back on Alimta every 3 weeks for a year. After all that, my cancer was inactive and only scar tissue showed wherever my cancer was. Mine was inside left lung, outside the lung, on the chest wall and a lymph node. I would say I am in a remission for now. I get CT scans every three months. One in June showed a small new nodule in left lung and three small ones in right lung. Went back in August for another scan and they had disappeared. I will get another scan in November. I am looking forward to reading your stories. We all want to be survivors! I am still dealing with chemo brain fog, fatigue and insomnia. I assume these are lingering results from the chemo. How do you deal with these issues?

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I wonder how long the chemo fog last because I still have it and I was thru with chemo and radiation at the end of April. Glad to hear things are going well with you

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We can blame everything on chemo fog. I think one word and say something totally different, etc. My neurologist says I do not have Alzheimer's so that is a positive since that runs in my family. So in my case chemo fog is better than the alternative.

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Welcome! And thank you for sharing your story. It will bring hope to people who thought they might not have any.

I've still had problems with chemo brain 6.5+ years out. I found gentle exercise helped me overcome the profound fatigue. Insomnia is another animal all together. Fortunately I retired and can schedule afternoons or nap when I'm done.

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I end up napping but am awake all night. Not much to do in the middle of the night. I am trying to go without a nap today and plan to go to bed early. Trying to get back on track. I slept yesterday to almost 2 p.m. Which is why I didn't sleep last night.

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I will try the exercise. If I do something one day then it takes a day or two to recover. But I can't blame it all on cancer. I have an autoimmune disease, Sjogren's Syndrome, and Fibromyalgia. So I got a triple whammy on the fatigue.

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Ncpoet, welcome!

Your story brings hope and light with it, so thank you for sharing and for joining this great group of people. It is also kind of you to share your symptoms; as you know it is helpful to hear that someone else is experiencing the same things you are. For some hints on care, take a peek at: freetobreathe.org/lung-canc...

Please keep talking!

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Ncpowt. Your cancer sounds like my husbands. He has BAC wth mucinous. It is inside his bronchioles and avealors. He has it in his right lung and sometimes in his left lung they see spots one scan and then they are gone the next scan. Very strange. He had carboplatin and Altima for 4 infusions andb13 infusions of Opdivo and it really didn't work to get rid of his cancer. It just held it at bay. The new plan is to remove his right lung because it is contained in his lung according to the PET scan. We are meeting with a surgeon at Dana Faber next week.

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I am sorry your husband is having such a rough time. Hope all goes well with his surgery. The Xalkori was working well for me until after seven months I fainted, fell, broke my ankle , and went into cardiac arrest. It seems the Xalkori and two of my medicines for my autoimmune disease all had a rare side effect of prolonged QT wave which stopped my heart. That was one time breaking my ankle was a plus since I was at the hospital when I went into cardiac arrest. That saved my life.

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I was diagnosed with stage 3b NSCLSC in 9/15. I had chemo (Cisplatin and Etopicide), 2 six day treatments, and radiation every day from 12/15 - 2/16. I was in remission from 2/16 - 12/16, but was very sick with radiation pneumonitis.

In 12/16, my CT Scan was so blurred from the infection, it could not be read. In January 2017, I was told the cancer had returned and because it was so bad in the left lung, no more treatments would be given. The oncologists said that they're concern was that I might have a good quality of life with what time I had left.

My oncologists were on a tumor board at Johns Hopkins along with many surgeons. The surgeons refused to attempt to remove my lung because of the bronchial tube being involved.

Before I left the office that day, my radiation oncologist said she knew of one other surgeon at Hopkins who was very progressive and she would ask if he'd consider the surgery.

Three days later the surgeon called and long story short, he agreed to do the surgery but that I needed to understand the odds were against me as this type of surgery had never been performed before.

On 2/27/17. My left lung, bronchial tube, and one rib were removed. In addition, they had to break the sternum and cut the pec muscle to use it to close off the opening on the esophagus after remiving the bronchial tube.

It was a long, hard recovery and I'm still trying to get my strength back. I do not use oxygen and I went for my three month CT SCAN and MRI of the brain last week and was told that I am cancer free!

I praise the good Lord every day for His healing power and know that He has carried me through this journey and walks with me every day. If nor for His mercy and grace, I would not be here.

Fight this battle with the Lord on your side and you too can be beat this. It's not easy and your going to have some really bad days along the way. Just remember that you have a God who is smarter than the doctors and who is our great Physician. May God carry you through this.

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Your faith is very up-lifting. I am sorry you had such a difficult time. I had a truly remarkable experience when I was first told I had cancer. I had a sense of peace begin at the top of my head. The sensation went through my whole body. I knew then I had hope and have remained positive throughout my cancer journey. My favorite Bible verse is Romans 12:12. "Be joyful in hope, patient in affliction and faithful in prayer."

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I'm still being treated with alimta every three weeks, so I can't answer your question. I also have nsclc stage 4, diagnosed 2.5 years ago. I'm so glad to hear of your terrific response to treatments!

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As of this month, I am celebrating 4 years survival since I was diagnosed in 2013. Mine was found when I fell over the dishwasher door. Lost my balance with a fistful of clean knives in my hands. Fortunately, as I was falling, I slung the knives away from me. Since I hit my head and chest, I went to the emergency room and the X-ray of my chest showed something suspicious. I had no symptoms and was a non-smoker so a bit shocked to find out lung cancer. Was going to have lobe removed, but after surgeon got in, he saw that it had spread and couldn't do the surgery. I call it my non-surgery surgery. Expecting a lobe out and waking up to hear stage 4 was unbelievable. Years ago you used to get chest X-rays with your annual physical. I am not advocating to do this annually but maybe somewhere in between? How could my cancer have been found early? What more can we do to find cancer in the early stages? I am happy more drug treatments are being discovered. Two more have come out since I was treated. Let's eradicate this disease before others go through what we have experienced. I am stepping off my soapbox now. When I start writing I go with the flow swirling in my brain.

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