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Found 20 results

  1. My wife, Heather’s lung cancer was discovered by accident. She was having an abdominal CT scan when the doctor noticed a small shadow on her lower right lobe. She subsequently had a chest CT scan. The Thoracic surgeon felt it was pneumonia scar but it was too small for a needle biopsy so he ordered a PET scan. We went for the PET scan and the radiologist who did the scan also read it and told her immediately that she did not have cancer. (It was not until a couple of years later that I actually read the report which indicated that there had been mild FDG uptake in the upper left quadrant of this spot.) She started having follow-up CT scans every 6 months. On one scan, the report came back that the spot had diminished in size. We were excited because cancer doesn’t shrink but unfortunately not informed enough to know that positioning during the scan can make a difference. She was then moved to an annual CT scan. Heather had her annual scan in July 2012 and we went to her parent’s cottage at the beach for a couple of weeks. When we returned home there a message on our machine to call the Thoracic surgeon’s office for her appointment. This was a new surgeon as the previous one had retired. She called the office and the receptionist said she was booking her for an appointment to see the surgeon because of the growth in her lung. The receptionist assumed that our family physician had informed us. I immediately called our family physician who was doing rounds in the hospital and asked him what was going on. He didn’t realize that the appointment would be set up so quickly and apologized and we made arrangements to meet at his office. We are fortunate to have such a wonderful family physician who we used as the center for all future appointments and advice. Heather underwent a wedge resection on Labour Day weekend 2012 to remove her tumor. The tumor tested positive for NSCLC Adenocarcinoma and was scheduled for a lobectomy to remove the bottom lobe of her right lung. This operation was performed on the Canadian Thanksgiving weekend in October, along with a wedge resection of a nodule in her middle lobe and Lymph node sampling from the mediastinum and hilar. She was Stage 3a T2N2M0 with metastasis in three different lymph node stations. All her lymph nodes also had vascular involvement. Her oncologist patted her knee and told her that she had a 15% probability of surviving 5 years. On New Year’s Eve, ending 2012, Heather began 4 rounds of chemo, Cisplatin and Navelbine followed by 25 radiation treatments. This has been a journey with many ups and downs with a few scares along the way but she is currently stable and enjoying life.
  2. Find A Cure Panel specializes in patient research for rare and serious disease and they have some current research for people and caregivers of people with Small Cell Lung Cancer (SCLC). To qualify for this research, you or your loved one with Small Cell Lung Cancer (SCLC): 1) Must have a diagnosis with Small Cell Lung Cancer (SCLC). 2) Be over 50 years old. 3) Have EXTENSIVE SCLC. Sometimes referred to as stage 3, stage 4 or metastatic SCLC. 4) Must have some experience with smoking. If you/your loved one NEVER SMOKED then you won’t qualify, unfortunately. 5) If you are a caregiver, you must be knowledgeable about your loved one’s condition and treatment. 6) If you are a caregiver who recently lost your loved one with SCLC, you can still participate if you lost your loved one in the last 12 months. It is easy to participate in. It’s one confidential and anonymous phone call with one moderator talking about your experience with Small Cell Lung Cancer (SCLC). If you are interested in participating, please contact FACP at info@findacurepanel.com and reference FACP/SCLC
  3. Starting a journey with my husband who has advanced stage 4 lung cancer. Where or what should we be thinking of doing ? We have our Faith, he was given 2 experimental chemo treatments of Keytrada(?) which was stopped. They planned on giving him Tarceva , can't afford it. Feeling hopeless. He isn't feeling that bad, tired and coughs a little so hard to even think that he might only have less than a year to live ! So overwhelmed on what we should be doing. Financially too. We have a furnace man coming tomorrow, have a leak in our 21 year old furnace..do we spend the money to get it fixed ($8000.00) or don't fix it because of medical bills, medications, etc .........so confused ! As a couple do people split up bank accounts ?? ..I know each State is different. So many questions .....sorry ! I will be praying for all of you. Many thanks !! Michelle
  4. Hi all, I'm reaching out in the hope to get some hope. My family and I are in the doom and gloom stage of a recurrent cancer diagnosis. My mom just received her 1 year "all clear" in April, but continued to have trouble breathing and had a terrible cough within the year after her treatment. She had her upper, right lobe removed and went through chemo and radiation for 12 weeks because the surgeon was unable to remove an all of the cancerous cells in her lymph node (which he wasn't expecting). She just had a biopsy Friday of a tumor on her right bronchial tube. Her pulmonary doctor was 90% sure it is cancer and the same type she had before, but we are still awaiting final word that it is cancer and what kind. We are so deflated. This is worse than the first diagnosis. It all seems so final now, that there is no hope. I am a planner, so I am obsessively searching the internet to see if it's possible to have the tumor surgically removed (her pulmonary doctor says no) and if you can have radiation in a similar area as before. We are old school thinking so we think we always need to cut the cancer out of us and are so afraid to hear that surgery isn't an option and possibly not even radiation. So them I'm left with the question of whether or not to trust immunotherapy (something that goes against my old school thinking). I am so desperate to hear that it's all going to be okay, but am scared that it isn't going to be. I hear a lot about 1st time cancer survivors, but not a lot about 2nd time survivors, something that scares me even more. I know that at the end of the day I will pull myself together and help my mom get through this, but my biggest fear of losing her too soon seems to be coming true. Anyway, that's my current situation and my very sad introduction. I am looking forward to reading hopeful and helpful posts to help me get my mom through this trying time. Steff
  5. Hi everyone, I'm Jessica Meeks and, in December 2012, my mother died due to lung cancer. I've recently (about a year and a half ago) started volunteering for LUNGevity and am interested to know if anyone in the Atlanta, GA area would like to form a support group for caregivers and family members, particularly those who have lost someone to lung cancer. If anyone is interested, please let me know as I would love to get a group together to help us all get through some rough times! Thanks for reading!
  6. Hello All, It's been a while since I've been on this site. In all honesty, I have been racked with anxiety for months now and really just need a place to get it off my chest. My dad is in the late stages of NSCLC, we moved him to hospice last week. It has been an emotional roller coaster to say the least. My dad has fluid in his lungs that gets drained every other day or so. He is finally not in a lot of pain. He's on a myriad of medicines and he is getting better sleep, but he is also becoming increasingly confused. He stares off for minutes at a time. He forgets what he is doing or saying in a very short period of time and he doesn't know where he is when he wakes up. On top of all of this, I am an anxiety sufferer, specifically healthy anxiety. I have had an irrational fear of dying young since I was like 8 years old and watched a documentary on kids with leukemia. About three or four years ago I was crippled by the thought that I had lymphoma. I lost weight, got night sweats, even thought I found a lump in my neck. I went to the doctor all the time until I was finally too afraid to go. Now my fixation is on ovarian cancer. As I watch my dad deteriorate physically and mentally, I become increasingly convinced that I will get cancer too. My anxiety causes very real symptoms, and can be incredibly distracting. I am just so overwhelmed. I wish cancer didn't incite such fear in me, but I've watched too many people die from it. Does anyone have similar problems? I'm scared that every time I talk to my dad it will be the last time, but I'm also terrified to suffer the same fate. The things I can control, I do right. I don't smoke or drink excessively. I eat a vegetarian, non-processed diet. I make as much of my own products as possible, but there are plenty of people who have done all the right things and still get cancer. Thank you all for letting me use this space as a place to vent my fears and worries.
  7. A clinical trial is a type of research study that tests how well medical approaches—screening, prevention, diagnosis, or treatment—work in people. Clinical trials can provide access to new approaches to lung cancer patients. However, most lung cancer patients do not participate in clinical trials. Please complete this survey about clinical trials by answering from your personal experience. The survey is 100% anonymous. THANK YOU for your time! Survey for Survivors: https://www.surveymonkey.com/r/Survivor_Clinical_Trial_2017 Survey for Caregivers: https://www.surveymonkey.com/r/Caregiver_Clinical_Trial_2017
  8. Time is supposed to heal our wounds, that’s what people say; but when you lose your best friend you realize that no amount of time will heal that void that is left. My mother was diagnosed with non small cell lung carcinoma three months after I turned eighteen, only weeks after what would turn out to be our last family portrait. The day the test results came back the only words I heard during the meeting were “cancer” which meant someday I’d be burying her. I don’t recall anything else; but she heard something very different she heard “cancer” and thought how do I fight this and win. She had an amazing oncology team that outfitted her with an aggressive and varied game plan and a thing called a port; but the most important thing they both shared was an optimistic attitude. When they gave her the port in her chest where she would get her chemotherapy , she was not upset that she had to get a port or that she was having chemicals placed in her body and hoping they would work; nope she was upset she was not the first person to get the port , she was number two. When they decided on radiation she got her long beautiful brown hair cut off into a short cute style and donated it for other people to get a wig; after all hers would grow back when she was in remission. She had an amazing belief that God would not have given her this to battle if she were not capable. She believed it was given to her because she was supposed to teach someone, somewhere, something and it may not be during her battle or during her remission it may be long after her death ; but if one person was saved or one person learned something than the fight was worth it. We took the time we were given and made amazing memories going to see our favorite places like Red Rocks or the buffalo herd, we also made memories and new traditions when we spent time in the hospital. If we were there during football season we ordered pizza and had it delivered to her room and then invited her nurses to come have a snack and catch up on the score. We enjoyed watching animated movies and we even got her a Gameboy to play the mind teaser games while she sat for hours getting chemo. In January, we received word our dad had suddenly passed, my parents had divorced when I was two. Her concern while she was in a hospital bed was not herself, but was us , her kids. Several months later we got a phone call that her father had unexpectedly passed away. She was a daddy’s girl and was unable to travel to his funeral so we filmed it for her. When we were in another state, our “sister from another mister”, her friend from work who was like a daughter to her, stayed with her while we buried our dad. It was on this trip we almost lost her, her blood pressure was so low they said they didn’t know how she was awake and talking. She persevered. As she grew weaker we made final plans, it was an enormously painful task asking her to decide where she wanted to be buried, what songs she wanted played and writing her will and her making the decision to not be resuscitated. Her wish was to die at home and we wanted to give her that. She had sacrificed her life for us, given us everything we could have ever wanted. She fought incredibly hard, she was my superman and I was watching her die and there was nothing I could do about it. She said that her goal was just to make it to January, so that her kids didn’t lose both their parents in the same year, but she would not make it. I remember begging God to either heal her or take her but I was not fair to make her stay just for us. It was not fair to make her suffer when she gave us such a wonderful life, after all we had each other to lean on. She deserved to be at peace. Fifteen days after her fifty-fifth birthday we made the calls to have everyone say their goodbyes. She was aware of where she was so we brought photographs and blankets and loved on her, the nurses said she knew we were there but she couldn’t respond or open her eyes or anything. I gave her a kiss and told her it was okay to go, that she didn’t have to stay here in pain for us, she deserved to be happy and at peace with the family in heaven. I stayed with her and she passed on October 18, 2007. This year marks ten years since she has been gone, she has missed so much. I enlisted in the military, my brother is dating a wonderful woman, my sister got married and her and her wife have an adorable son. I got married and have a now five year old step son, bought a house and will complete my college degree this year. She gave us life and taught us about everything from friendship to how to do laundry but most importantly she taught us to never give up because even cancer can be beaten. It was not a physical victory, but victory for the soul. No matter what happened through her illness she never let it define her as a person. She was able to complete one last thing on her bucket list when she earned her wings: she was able to be an organ donor and donate her eyes to someone who needed them. Even in her death she was able to put someone else before herself ! Please if you are fighting this illness know that there is hope, it may not end up being a physical victory but if you keep your sense of humor and your love of life than cancer can never truly be victorious. God bless you on your trip down the yellow-brick road! In loving memory: Patricia Fay Hartlep (October 3, 1952- October 18, 2007) Thank you to all those who care for those fighting! Bless those who love those struggling and rejoice for those who have earned their wings!
  9. Study Announcement: Lung Cancer Caregiver Study If you are over the age of 18 and a romantic partner and the caregiver of someone who has been diagnosed with lung cancer in the past two years, please consider contributing to this important study on the quality of life of caregivers of lung cancer patients and survivors. This study consists of completing a brief online survey at 2 different time points over the course of six months (initial time point and 6 months later). Some find the surveys helpful for reflecting on their caregiving experience, and you would be contributing to our understanding of the important but understudied topic of the challenges faced by caregivers. The survey questions will ask you about your feelings about caregiving, your quality of life, your physical health, and the physical health of the lung cancer survivor for whom you are a caregiver. The survey will take approximately 30 minutes at each of the two time points. This research is being conducted by Trisha Raque-Bogdan, Ph.D. of the University of Denver and Amanda Ginter, Ph.D., of Towson University. If you would like to participate in this research, please either go to https://udenver.qualtrics.com/SE/?SID=SV_etkPpCNDT9HwkKN or contact Trisha Raque-Bogdan at trisha.raque-bogdan@du.edu. Thank you for your consideration! Trisha Raque-Bogdan, Ph.D. Assistant Professor, Counseling Psychology University of Denver Amanda Ginter, Ph.D. Assistant Professor, Family Studies Towson University This study has been approved for posting by LUNGevity Foundation.
  10. What Not to Say to a Cancer Patient By: Jane E. Brody What do you think is the most commonly asked question of a person who has, or has had, cancer? If you guessed, “How are you?” you got it right. But as caring as those words may seem, they are often not helpful and may even be harmful. At a celebratory family gathering a year after my own cancer treatment, a distant relative asked me just that. I answered, “I’m fine.” She then pressed, “How are you really?” “Really” I was fine, I told her. But what if I hadn’t been? Would I have wanted to launch into a description of bad medical news at what was supposed to be a fun event? Would I have wanted even to be reminded of a bout with cancer? Although my relative undoubtedly meant well, the way her concern was expressed struck me as intrusive. A diagnosis of cancer can tie the tongues of friends and family members or prompt them to utter inappropriate, albeit well-meaning, comments. Some who don’t know what to say simply avoid the cancer patient altogether, an act that can be more painful than if they said or did the wrong thing. A new book, “Loving, Supporting, and Caring for the Cancer Patient,” by a man who has been treated for a potentially life-threatening cancer and who has counseled dozens of others dealing with this disease, got me thinking about the best ways to talk with someone facing cancer — its diagnosis, treatment and aftermath. The book’s author, Stan Goldberg, happens to be a communications specialist, a professor emeritus of communicative disorders at San Francisco State University. Dr. Goldberg learned at age 57 that he had an aggressive form of prostate cancer. He said in an interview that cancer patients too often encounter people who assume the role of cheerleader, saying things like “Don’t worry about it,” “You’ll be fine,” “We’ll battle this together,” “They’ll find a cure.” However, he observed, “Words of optimism may work in the short run, but in the long run they can induce guilt if the cancer is more virulent and defeats a person’s best effort. “I was dealing with the possibility that my life would end shortly, or if it didn’t, it would be changed dramatically. False optimism devalued what was going on in my body. People were insensitive not from a lack of compassion but from not knowing what is really helpful.” What he and those he’s counseled have found to be most helpful were not words but actions, not “Let me know what I can do to help,” which places the burden on the patient, but “I’ll be bringing dinner for your family this week. What day is best for you?” As a self-described “independent cuss” reluctant to ask anyone for help, Dr. Goldberg said his son taught him this important lesson. “He came to my house during my recovery from surgery and said ‘Stop lifting those boxes, Dad. I’ll do it for you.’” Another author of very helpful books on living with cancer is Dr. Wendy Schlessel Harpham, who has had a recurring cancer for more than two decades. She suggests that people offer specific ways they can help. For example, they may say they can shop for groceries, care for children, take the dog for a run, or accompany the patient to the doctor, and then be sure to follow through with the offer. Many people now use online sites like caringbridge.org to keep people up to date on their health and needs or organizing platforms such as mealtrain.com or lotsahelpinghands.com to ask for specific help. Dr. Harpham said she came to dread the query “How are you?” because “no matter how it was intended, being asked ‘How are you?’ rattled my heightened sense of vulnerability. I found myself consoling those who asked and then fighting the contagion of grief and fear. Even when the news was good, I didn’t have the energy to include all the people who wanted updates.” Dr. Goldberg suggests that when visiting a cancer patient, people talk less and listen more. ”Often the greatest support comes from silently witnessing what a person with cancer is experiencing,” he wrote. “Sometimes only a calm presence and compassionate listening are necessary. Silence becomes the breathing space in which people living with cancer can begin difficult conversations.” In an article in Prevention magazine, Melissa Fiorenza offered this helpful suggestion for what to say to someone you deeply care for: “Feel free to cry with me, to talk, or not to talk. I’ll take my lead from you.” When talking, Dr. Goldberg suggested, “engage more in conversations and less in question-and-answer interactions.” But if questions are asked, they should be open-ended ones like “Do you want to tell me about your cancer and what you’re going through? Maybe I can find ways to be helpful.” Among the many suggested “don’ts” are these: • Don’t make light of a patient’s physical changes by saying things like “At least you finally lost those extra pounds.” • Don’t talk about other patients with similar cancers, even if they fared well — no two cancers are alike. It’s fine, though, to ask if the patient would like to talk with someone else who’s been through it. • Don’t say the patient is lucky to have one kind of cancer rather than another, which downplays what the person is going through. There’s nothing lucky about having cancer even if it’s a “good” cancer. • Don’t say “I know how you feel” because you can’t possibly know. Better to ask, “Do you want to talk about how you feel, how having cancer is affecting you?” • Don’t offer information about unproven treatments or referrals to doctors with questionable credentials. • Don’t suggest that the person’s lifestyle is to blame for the disease, even if it may have been a contributing cause. Blame is not helpful. Many factors influence cancer risk; even for lifelong smokers, getting cancer is often just bad luck. • Don’t preach to the patient about staying positive, which can induce feelings of guilt in the patient if things don’t go well. Better to say, “I’m here for you no matter what happens,” and mean it. • Don’t ask about prognosis. If the patient volunteers that information, it’s O.K. to talk further about its implications. Otherwise, it’s better to stifle your curiosity. • Don’t burden the patient with your own feelings of distress, although it’s fine to say, “I’m so sorry this happened to you.” If you feel overwhelmed by the prospect of interacting with a person with cancer, it’s better to say, “I don’t know what to say” than to say nothing at all or to avoid the person entirely, who may then feel abandoned and think you don’t care. This story was published on nytimes.com on 11/28/16. Link: http://www.nytimes.com/2016/11/28/well/live/what-not-to-say-to-a-cancer-patient.html?smid=fb-share&_r=0
  11. Are you a lung cancer caregiver? Please participate in this 5-10 minute anonymous survey and tell us about your preferences for getting information about lung cancer. Your input is extremely important. It will help us better serve the lung cancer community. https://www.surveymonkey.com/r/R23F5XN
  12. The demands of lung cancer caregiving can be overwhelming, especially if you feel you have little control over the situation or you have little or no help. Let's chat about it! Have you ever felt helpless and powerless in your role as caregiver? It's important to watch for warning signs and take action right away to lighten your load and avoid serious burnout. TOPIC: Lung Cancer Caregiver Stress, Burnout, and Depression We will chat about signs and symptoms of caregiver stress and burnout. How can you recognize the signs of caregiver stress and burnout? What resources are available to help ease the burdens on lung cancer caregivers? Ways that families and friends can help their loved ones and share experiences and tips that may help others. DETAILS: Date: Wednesday, August 3, 2016 Time: 5pm Pacific/7pm Central/8pm Eastern This chat is open to ALL lung cancer caregivers, patients, survivors, and professionals. Are you a patient seeking help for your caregiver? This chat is for you too. TWITTER CHAT TIPS: A great online tool for Twitter chat participation is http://www.tchat.io/ Just log into your Twitter account from this site and then enter our chat hashtag #LCChat. You'll be able to follow right along and read everyone's tweets, retweets, likes, and replies!
  13. Join us for the next Caregiver Twitter Chat: Topic: How Can Lung Cancer Caregivers Communicate with the Healthcare Team? Date: Wednesday July 6, 2016 Time: 5pm Pacific/7pm Central/8pm Eastern This chat is open to ALL lung cancer caregivers, patients, survivors, and professionals. Are you a patient seeking help for your caregiver? This chat is for you too. Twitter Chat tips: A great online tool for Twitter chat participation is http://www.tchat.io/ Just log into your Twitter account from this site and then enter our chat hashtag #LCChat. You'll be able to follow right along and read everyone's tweets, retweets, likes, and replies!
  14. Let's talk about Long Distance Caregiving! Topic: Long Distance Lung Cancer Caregiving/Sharing Responsibilities More information: What is Long Distance Caregiving? Can you participate in your loved ones care when you don't live with them? We will discuss ways that families and friends can help from a distance and hear from others who have experience being long-distance caregivers. Date: Wednesday June 1, 2016 Time: 5pm Pacific/7pm Central/8pm Eastern This chat is open to ALL lung cancer caregivers, patients, survivors, and professionals. Are you a patient seeking help for your caregiver? This chat is for you too. Twitter Chat tips: A great online tool for Twitter chat participation is http://www.tchat.io/ Just log into your Twitter account from this site and then enter our chat hashtag #LCCaregiver. You'll be able to follow right along and read everyone's tweets, retweets, likes, and replies!
  15. http://www.lungevity.org/sites/default/files/file-uploads/04-asking-family-and-friends-for-help.pdf http://ow.ly/WOd0I
  16. Good Day Everyone, I am caring for my 49 year old never smoking husband Jeff. He was diagnosed July 31, 2015 with stage 4 NSCLC with EFGR mutation. He is responding well to Tarceva. He has three tumors in his lungs, lymph node activity and many, many metastasis to his bones. (A whole page worth.) He had very few symptoms which is why it was caught so late. Ultimately a back ache is how they found it. However, once diagnosed, he became very sick very fast. He lost 35 pounds and because very weak. It was a very dark place for us both. I am happy to report we have seen the Tarceva light and his quality of life and overall condition have improved significantly. We are now to the place where we can see outside our bubble and we want to help the LC community. Thanks for reading my post. I look forward to getting to know everyone and their stores better. Katie (& Jeff) PS we are in Fredericksburg, VA. We are looking for other LC Community members in this area to collaborate with.
  17. Don't miss this Tweetchat! December 2nd, 7pm CT/8pm ET We will discuss the caregiver role, things you wish you had known and tips for new caregivers.
  18. LizG

    Mobility Help

    Hi everyone, Since I last was active in the forum my mom (Stage IV Adenocarcinoma, diagnosed 9/14) has had a severe decline in her mobility and regularly needs to use a wheelchair. She has been experiencing a host of digestive side effects from her pain medication which have left her pretty frequently unable to eat. The weakness this causes is the main contribution to her overall mobility problems. Mom is no longer able to navigate the stairs safely, so to take her to appointments and treatment we have to carry her down the stairs to the driveway to get her to the car. I am trying to find a way to have a wheelchair ramp installed at the house so that she can come in and out safely, especially as winter fast approaches. Right now the lowest quote is $4000... and can't be covered by insurance. Does anyone have a recommendation of where to find resources to help with the cost?
  19. Hi everyone, I am hoping for some advice/insights on good ways to talk to potential employers about FMLA as a caregiver. I have been working as a contracting consultant since before my mom became ill but today found out that my current contract will be terminated at the end of the month (not unusual for my line of work but not awesome timing). I will be looking for new employment at the end of the month. My current employer was understanding and flexible with time as I travel to help my mom once a month, and I was able to work odd hours on days I accompanied her to chemo or dr appointments and on days when extra help around the house was needed. I am worried about finding a job now where I can continue to be able to be with my mom like that. Do you have advice on whether I should broach this topic during interviews (like at what point) and what is the best way to approach it? I'm not really educated in FMLA and since I often contract that's not really an option in some jobs. Any help would be greatly appreciated! Liz
  20. Hello, I am Liz and I've recently been approved to participate in Lungevity forums. I am 28 years old and my mom was recently diagnosed with stage 4 NSCLC. She is currently in chemotherapy and has also had radiation and another non-surgical procedure to help with some of her mets. I come from a large family and have several younger siblings, including two teenagers who live at home with my parents. This has been a rough few months for all of us. I am a part-time caretaker and full time cheerleader for my mom. I travel from where I live to stay with her 1-2 weeks each month. I am very much in need of people to talk to and share experiences with. I want to learn as much as I can about treatments and palliative care that can help my mom have the best quality of life possible, and I also need some help myself. I find it difficult to talk to my siblings or dad openly about my feelings and fears and hope that I can make some friends and find support here. I also want to learn how to be a better caretaker and an ally for my mom. I'm happy to become part your community and look forward to learning and growing with you all, and becoming a better advocate for lung cancer patients and a friend. Liz
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