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    Lung cancer, how did you survive?

    Asked by WhatNextEmails on Monday, March 11, 2013

    Lung cancer, how did you survive?

    We need your help. This month we are putting together a collection of articles for those newly diagnosed on what actions survivors took to beat their specific type of cancer. Please take a few minutes to share your experiences and advice for those newly diagnosed, and your posts might just get included in our articles. Feel free to share whatever comes to mind. Here are some more specific questions to help get the juices going: What kind of support did you have? Were there things you did that really made a difference? How do you go about finding your medical care team? Who made up your team? What resources did you find that were most helpful to you?

    7 Answers from the Community

    7 answers
    • EllasDaddy's Avatar
      EllasDaddy

      I'm going to start by saying, "Listen to your body." Looking back I see things that I wish that I could change. I guess my journey actually started 2 1/2 years ago. I woke up in the middle of the night thinking that I was having a heart attack. Panicked my wife drove us 1 1/2 miles to the hospital. Not what I would recommend people to do. Once there they determined it was not a heart attack but a spontanious collasped left lung. I had had several when I was younger but nothing like this. After having surgery to fix my lung the doctor said that there was some scarring on my right side but wasn't worried about it.
      Fast forward to 2012. I started having pnemonia like symptoms and the family doctor said it was do to being an ex-smoker - COPD and gave me antibiotics. The second time I developed the same symptoms with a severe cough he did xrays and said that I had coughed so hard that I cracked 2 ribs. More antibiotics and pain meds. It never REALLY got better so I went to see a pulmonologist (9/12). She was very through. While waiting for test results I ended up in the ER with breathing problems. They said 2 things, I had 2 broken ribs, 2 cracked ribs and what the ER doctor thought was something suspisous in my right lung.
      Back to my pulmonologist for the test results. This was the first time I have ever seen a doctor who stumbled for words. When she finally got it out it was like she hit me in the stomach. "You've got lung cancer and it looks like it may have spread." She recommended me to an oncologist that she knew and even made the calls to get me in to his office the next day. This is also the first time that I had ever had a doctor cry with us and hug me. At first it made me think that I was worse than she was telling me. Now I realize it was something that she normally didn't have to do and it deeply disturbed her to have to tell us.
      I went to see my new oncologist the next day. He ordered some more tests for the same day and told us that I would be starting chemo the very next week (3x/wk for 6 rounds). He explained SCLC, where it had spread, what chemo I was going to get (Carboplatin, Etoposide, Xgeva, Neulasta), side effects and what we were going to do to help with them. He also recommended having a port put in and what it was and why.
      The first day of chemo (10/2/12) went smoothly until that night. I had a severe panic attack. I thought I was dying. My wife called the paramedics and they took me to the hospital. I don't remember what they gave me but it calmed me down. The next day at chemo we told them what happened and with a quick consult with the oncologist they gave me a shot of Adovant during chemo and a prescription for Xanex.
      As far as side effects - I had nausea, mainly dry heaves, at least once sometime during the week of chemo or right after. Depression and Anxiety were a constant battle. With all of the drugs comes constipation. The one that I didn't think would be a big deal, but was, was losing my hair. I guess that is when reality sets in.
      I had my last round of Chemo 1/13 and a few weeks later was told that I was in remission.
      After consultation with my oncologist and radiation oncologist we have decided to do some PCI treatments on my brain. Nothing ever showed up in PET scans or MRI's but by doing them now my chances of developing brain tumors is greatly reduced. I start these this Wednesday (3/13). More to come! Positive thoughts! Please feel free to ask me any questions. Writing this, even with spelling errors, has been very theraputic. Thank-you, Jack.

      almost 4 years ago
    • chrissy's Avatar
      chrissy

      WHAT ARE PCI TREATMENTS?

      almost 4 years ago
    • EllasDaddy's Avatar
      EllasDaddy

      Chrissy, Prophylactic cranial irradiation (PCI)is a preventative radiation therapy to the head to kill cells that may have already spread there, but are unable to be seen yet with scans. PCI is used most commonly with small cell lung cancers that have responded to initial treatment with chemotherapy and radiation therapy.

      almost 4 years ago
    • EllasDaddy's Avatar
      EllasDaddy

      UPDATE: In May '13 I found out the cancer had re occurred. I was told I had two small spots on my liver and a couple on my hip bone. I restarted Chemo the same month. They put me on Taxol once a week for 3 weeks for 4 rounds. I'm due to finish the end of August. I've had very minimal side effects. PET scan first week of August.

      over 3 years ago
    • cheryncp's Avatar
      cheryncp

      I was misdiagnosed for several months by my primary care physician before I took it upon myself to schedule an appointment with a pulmonologist who had me perform a pulmonary function test, then took a chest x-ray which revealed a large pleural effusion of the right lung. I was sent for a thoracentesis which revealed cancer cells in the 1.5 liters of fluid that was drained from my lung. From there my pulmonologist sent me to a thoracic surgeon who performed a pleurodisis which drained another 2 liters of fluid and sealed the pleural lining and a biopsy which showed several tumors that tested positive for adenocarcinoma with the ALK mutation. I was started on an oral targeted therapy drug and have responded very well to it.
      I would say if you are having a health issue that is not being resolved do not be afraid to get a second opinion it may just save your life as the symptoms of lung cancer can mimic other respiratory problems and is often not diagnosed until it is in the later more dangerous stages. I am blessed to have a great support team in my family, friends, church and my medical team.

      about 1 year ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      For point of reference in the future, I was diagnosed with stage 4 lung cancer and given 4 months to live in October 2012.

      What kind of support did you have?

      My mom and husband have been beside me throughout my journey, especially my husband. Over time, mom has sort of fallen by the wayside.

      A few very faithful friends have walked with me, too. Some became friends only after my diagnosis.

      My PCP has been a godsend. She discovered my cancer and she hooked me up with my first and current oncologists. She is a huge supporter.

      While my faith is strong, we don't have a church home. Nevertheless, my faith drives everything I do and think.

      Were there things you did that really made a difference?

      For me, what has really made a difference is refusing to quit living. Maybe I have a new normal, but it isn't too far from my old normal.

      Fortunately, my friends and family supported me continuing to live my life. I kept my hobbies and I kept on living to the extent possible.

      My attitude is that I am in a win-win situation. I love living life here on earth. But. When I die, I pass to streets of gold and the arms of my Saviour. I really can't lose.

      How do you go about finding your medical care team?

      My primary care doctor took the lead on finding my oncologist for me. When I needed to find another, she helped me.

      Now, my fabulous oncologist sets me up with any specialist I need. Since I am in a clinical trial, I also have a researcher who carefully monitors how I am doing.

      Who made up your team?

      My cancer was inoperable and radiation wasn't an option so my medical team has consisted of my oncologist and his staff.

      My life team has included my husband, who has supported me every step of the way. Additionally, I have a handful of friends who are also there for me, every step of the way. And, I can't leave out my two dogs, and now, two cats, who daily bring me great joy. I really can't imagine this journey without all of these supporters.

      What resources did you find that were most helpful to you?

      I love participating here on WhatNext. It has been my go-to forum ever since I found it.

      There are some lung cancer specific sites that are good as well:

      LUNGevity, Lung Force and American Lung Association, Bonnie Addario Foundation, Free to Breathe ... all are good and offer reliable information for those with lung cancer.

      about 1 month ago
    • dstranathan's Avatar
      dstranathan

      I am now on disability, fighting my cancer is a full-time job. In my past life I was the Business Development Manager for a technology company in Rohnert Park, CA. When not doing advocacy work you can usually find me in a spin class or out in Mother Nature hiking or biking with my friends.

      I was dx with Stage 4 Lung Cancer in June of 2009. Since then I have done radiation, six cycles of chemotherapy Taxol, Carbo and Avastin for the lung cancer. That was followed by six cycles of Genzar for metastases to my liver.

      In March of 2010 because I was non-small cell adenocarcinoma I was given a targeted therapy (Tarceva) to try. At that time it was less expensive to try the medication and see if it worked than sending the tissue out for testing, Tarceva kept me stable for over six years.

      During those years I was given x-rays and CT scans that showed no change in the tumors in my lungs, so it was thought that since the Tarceva was working so well I had the EGFR mutation. As I became more aware of genomic sequencing and knew my tissue had been saved I requested that it be tested for the basic mutations EGFR, ALK, after checking I was told there was not enough tissue for testing.

      That was also about the time I realized Tarceva wasn’t going to work forever and I probably needed a plan B. Having more knowledge about genomic sequencing I knew high on that list should be a new biopsy to have my tumor tested.

      In November of 2015 I was working on my friend Tim’s ranch and after a long day of shoveling decomposed granite I notice when Tim and I retired for the night my left leg was swollen. I post everything on social media, so when I posted a picture of my leg I received more than one suggestion it might be a blood clot and I should have it scanned. That scan triggered my Oncologist to order a CT scan the following week and that scan revealed a 1.2 CM tumor in my left lung.

      This is when my plan B kicked in. Before requesting a needle biopsy of the tumor I wanted conformation the cancer hadn’t metastasized to any other location. So first I requested a PET scan, followed by a bone scan and a brain MRI. It was an all-clear, so now I knew it was only the new ½ inch tumor in my left lung I had to confront.

      In December of 2015 I had a needle biopsy performed. I asked to speak to the surgeon performing the procedure. He came in as I was being hooked up with an IV. I stated to him that when he was in there snapping away to please don’t be polite, take as much as you like. He shared with me he was just given the request for the biopsy and didn’t know my story. I explained the tissue was going to be for genomic sequencing and I needed as much tissue as possible.
      After the procedure he came into recovery room with a big smile and shared that I would be proud of him. I knew from my research genomic sequencing takes a larger sample so didn’t want to go back for a second procedure.

      I post my entire cancer journey on social media and have connected with doctors, scientist, nurses and bloggers, also concerned friends and family that all care about my wellbeing. So I know if I post my treatment plans I will hear from someone if I am off track.

      After posting about my tissue biopsy and I received a private message from my friend Bonnie, she asked if I was sending the tissue to Foundation Medicine? I said I didn’t think my healthcare provider would cover the cost. She gave me a person to contact and within a couple of days my tumor was on the way for testing. Foundation Medicine said they would bill my insurance and if there was an issue I could apply for financial assistance, but my wellbeing was there first priority.

      I had the results within two weeks of Foundation Medicine receiving my tissue sample. I was very impressed with the report, over 24 pages. It discussed my alterations and statics about my alterations, and even ones that I had expression for that did not yet have treatment protocols. The report also listed FDA approved treatments for my alterations and all the clinical trials that were available.

      Since my girlfriend Penny passed in 2014 from small cell lung cancer I have dedicated myself to advocating for lung cancer research and awareness. I became a Consumer Reviewer for the Department of Defense Lung Cancer Research Program in 2013 and advocate for numerous Lung Cancer groups .

      My connections with these groups have put me in touch with some of the top doctors, researchers and advocates in the lung cancer community. With my Foundation One report in hand I set out to look for a second opinion. I was shocked to find out after being stable on Tarceva for six years I had none of the common mutations, including EGFR. What showed up on the Foundation One report was NTRK1 without fusion and PIK3CA.

      I was able to connect with a top Oncologist at Mass General Hospital for a second opinion. He reviewed my reports and agreed with my decision that Opdivo (Nivolumab) was my next best option; I am now on my twenty fourth infusions and feeling great and again have stable disease.

      This last November I went to the ER for a collapsed right lung caused by a lung bleb (blister) from previous radiation. After 4 days in the hospital and the hole in my right lung would not heal I was transferred for surgery. They performed a Vats procedure to staple off the upper part of my right lung then performed a Talc procedure to insure the other blebs would not again collapse my lung.
      When I was diagnosed in 2009 with stage 4 non-small cell lung cancer I was given 8-12 months to live.

      It is because of precision medicine that I am still writing my story almost eight years later, and still mountain biking and enjoying life to the fullest.

      Penny never had the opportunity to benefit from precision medicine or treatments like immunotherapy. Penny passed on 1-21-2014 at my home in California surrounded by her family.

      My last promise to Penny was I would continue to advocate for lung cancer research and awareness. This opportunity to share our story helps me keep that promise to her, so I thank you. Feel free to connect with me on Facebook or Twitter don450sl

      Be well,
      Don Stranathan
      Stage 4 Lung Cancer Survivor

      about 1 month ago

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