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Bagley

Greetings!

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I was diagnosed with adenocarcinoma non-small cell lung cancer in November.  It is recurring since I had cancer in my right upper lobe in May 2018 (which was removed surgically).  I begin radiation and chemotherapy this week and am hopeful that all will go well.  I've never had this kind of treatment, so I naturally have a bit of anxiety.  

I have 2 daughters, 2 son-in-laws, 4 grand children, 1 brother and a spattering of great friends and extended family members.  I live in a small Wisconsin town, I'm retired but work part-time on occasion and volunteer sporadically.

I'm hopeful that I am strong enough to beat this cancer once and for all.

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Hi everyone My name is Lisa and my best bud and daddy had a lobectomy that removed most of his right lung in Hamilton Ontario Canada which is 1hr from where he lives with my mom and from where I live in Pickering.  His surgery went well but he developed pneumonia and a bronch fistula...it’s been a month and he remains in ICU with a tracheotomy...he is still struggling and remains highly sedated..:.i need stories of hope!!!! He is an emotional person and is loosing his will to fight....I’m lucky to have a great friend who is allowing my mom and I to stay at her house but the long days and being away from my husband and son is exhausting and mother has health issues as well... not driving.... we need hope and stories of success.... doctor had been amazing and all the medical staff but we are very worried.

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Bagley,

Welcome here. I completely understand how unsettling a lung cancer recurrence can be.  I've had four! You didn't mention where in your body the recurrence is located.

I think you'll find chemo/radiation to be an effective treatment. Here are some infusion tips and tricks that helped me.

Stay the course.

Tom

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Lisa,

I had two bronchia fistulas: the first after a pneumonectomy of my right lung, the second after a fistula repair attempt with omentum. Unfortunately, after the repair attempt, the sutures gave way and I found myself in the ICU for 6 weeks in an induced coma like your dad. As they eased off the sedation and removed the endotracheal intubation tube, I developed pneumonia and then aspirational pneumonia because my epiglottis stopped functioning. I had to recover to face another gruesome surgery to once again repair the fistula. So, here is my hope. Come February, I will have survived 16 years after diagnosis of my lung cancer and four thoracic surgeries in a year, three tracheal stent insertions and removals, sixteen infusions of chemotherapy, thirty fractional radiation sessions and one stereotactic body radiation therapy treatment. If I can live, so can your dad.

So, where to begin. First, take care of yourself. Your mother and you are noble and demonstrating love and care by being bedside. But, given my recollection of ICU sedation, I didn't recall anyone being bedside (despite visits from everyone in my family). In fact, I have no memories of that time in the ICU. My surgeon told me the anesthesia has an effect of tamping down short term memory. So take some time off and rest. You'll need your strength and stamina for his future treatment.

When you do visit, try and arrange a meeting with your dad's thoracic surgeon. Managing a bronchia fistula is a challenging medical procedure and is best explained in a quiet room away from the ICU. Focus on understanding the methods the surgeon will use to repair the fistula. Understand the unique challenges of recovery, including possible discharge with a chest tube and drain. Ask about the utility of an elevated bed to ease surgical recovery pain at home and if recommended, line up sources for rental or purchase. Will supplemental oxygen be necessary? Try also to have a hospital conference with your dad's medical oncologist. Normally, post surgical chemotherapy is given and assuming the fistula is resolved, you'll need to understand and plan for this therapy if necessary.

My wife and family understand the torment I went through during my lengthy ICU stay. Fortunately, I don't and I'm hoping your dad's recollection parallels mine. If you feel the need to go to hospital everyday, then alternate your visits. Rest now to prepare for the future battle.

Stay the course.

Tom

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Tom I just found this forum today...I’m so at a loss...your thoughtful advice brings tears to my eyes as I am not with my dad today and feeling super guilty....thank you very much.... I also saw a link you posted about the mean medium which gave much perspective thank you so much

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Bagley,

I had chemo as my first line treatment, and chemo/radiation for my first recurrence. What are your chemo drugs? I highly recommend this site for information about the drugs and potential side effects. Chemo was not fun, but it is light years better than it was 10 years ago. Your medical team should also be able to manage your side effects.

 

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Hi Bagley, I am sorry that you are going through the treatments for cancer. I am new too joined in Sept 2019, diagnosed and started treatment after biopsy in April, 30 radiation treatments, 4 rounds of chemo/ and 5 infusions of durvalumab, no fun. Thankfully I was able to get through that, the immunotherapy was the worse for me, I needed to stop after 5 infusions. I feel much better now. It's a rough road, with bumps and holes in it. Do your best to get as much rest each day, and some exercise, it is good to keep the blood circulating, vitamin B12, D3 and drinks plenty of water I am saying at least 48 ounces, put your water for the day in fridg ( if you like it cold) and then on the last bottle load up for the following day of water. Get a supply of plastic wear, after radiation it's hard to tolerate the metal on utensils. Get that family/friends to be by your side, you'll need the support, and you can always turn to those that walked the same steps for some helpful advice of to let out some emotions, most of all stay focused on getting through this, knowing you can do it! Pray hope and don't worry! Each day with the ones you love is always best, no matter what happens. Chin up, you'll be with the warriors that have faced the same! Love, Kate7617

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