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  1. Hi. I’m new. My husband & I moved to a new city a year ago excited about being empty nesters as out last of 4 kiddos went off to college 2 years ago. a couple of months later he had major stomach issues & had to have emergency stomach surgery, but when did scan they found he had stage 4 metastatic lung cancer. Gave him about a year & 1/2, maybe 2 years to live. we have been on a hell-ashious journey Ever sense. I’m working hard to stay as healthy as I can, emotionally through this craziness, emotional rollercoaster that blindsided us. And that is what led me here. Ive been looking for, “my people” who understand. B/c God love my friends, they don’t & I hope they never have to. Yet I need someone who does. Love & hugs to all on this treacherous journey. God bless.
  2. Hello all, hoping you can help perhaps? My 74-year-old mum has been in hospital for sclc top-left lobe. That was removed in surgery last week, and despite having a pulmonary bleed on the table which early ended things, and a lung infection, mum has been recovering well. She was told by her oncologist today that her recent headaches are because the Squamous Cell has metastised to her brain - I don't know how many, or how bad. But he has told her she has less than a year to live. I am trying to see her oncologist tomorrow, and he will no doubt tell me more, but are there any links I can be looking at, about potential treatments? I also need to know what to say to someone who has just been told they have a year to live. Any advice gratefully received, I'm in the UK. x
  3. Hi everyone. In February of this year my husband was diagnosed with stage 3 non small cell lung cancer. One lymph node was involved. He underwent 7 weeks of radiation and 7 chemo treatments, finishing the end of April. In July be began a year’s worth of immunotherapy every other week-Imfinsi or Infinsi? I guess its brand new at least in our area of the country. He just had a PET scan and its back in both the lung and the lymph node-smaller than before (20-30% of what it was at diagnosis), but back only 6 months later. I just dont know what to think now. After all the treatment its back in 6 months? Does anyone else have any similar experiences? Any information or help is greatly appreciated.
  4. Hello, My mother, 76 years old, was diagnosed with the stage 4 NSCLC in April 2018. She has been taking Xalkori (Crizotinib) since May, and suffering from some severe side effects. I’ve been taking care of her 24/7 over 2 months, and it has been difficult seeing her go through this much pain. She was pretty healthy until recently, and we even took a tip to Santa Fe today last year. I’d like to hear experiences from people here and get more info about various treatments.
  5. Aloha! Firstly, I'm delighted to have found this site. I've done a lot of reading since my husband was diagnosed, but now it's helpful to find an interactive site where I can read about real folks' journeys, and ask questions of those who have been or are going through similar experiences. My husband's diagnosis was confirmed March 20 2018, five days after his 64th birthday: adenocarcinoma, right lobe. We are so fortunate that it's been identified as stage I, and appears to be restricted to one lobe. We've gone through the entire waiting game as I guess everyone does: chest x-ray in February, 'cloud' assumed to be pneumonia, course of antibiotics that didn't work, CT scan, initial possible diagnosis, lung biopsy, confirmed diagnosis, PET scan (nothing else lit up), brain scan (nothing found, heheh!), EBUS biopsy to check lymph nodes (clear). The EBUS result was a huge relief, as the surgeon had said that if anything showed up he would want him to have a course of chemo first, which would delay the surgery... My DH (thanks for the abbreviation list!) would have been v upset by that as all he wants is to rip the sucker out asap!! The final pre-op hurdle was a stress test today to ensure his heart was strong enough for surgery (thankfully he passed with flying colors), and he is scheduled for surgery (robotic lobectomy) this coming Monday, May 7. While writing this, he just came in to show me the uneven shaved patches from today's electrodes; more than hirsute, he's bordering on gorilla-man, so we had a good laugh, and I said I'll probably get stubble-burn when I lie on his chest tonight! We live on Kaua'i, so have had to travel to O'ahu for several of the scans, and he has to fly over for the day on Friday for the pre-op. We will both go over for the surgery, so I will stay in a hotel while he's in the hospital. The extra travel arrangements and expenses of so many separate trips are a bit frustrating, but I guess that's often the same for folks on the mainland who live a long way from a specialist facility. However, we are so thankful for all the wonderful consultants, surgeons and medical staff that we have met so far, both on this island and O'ahu. Having read that many are diagnosed stage III or IV, and it's not often caught this early, we are feeling very fortunate indeed, but I still have worries and questions. I know that the robotic-assisted surgery is the least invasive type of treatment, and should provide the quickest recovery, but I still wonder what I might expect, as his carer, post-surgery, both in the first couple of days in hospital and also in the weeks and months ahead; also what is the likelihood of him requiring or not requiring any post-op medications/chemo etc.? Should I put those questions out in a separate topic perhaps, or is someone likely to see them here? Anyway, thanks for 'listening' and, again, thank you for this awesome support system.
  6. Join LUNGevity Foundation for a Twitter chat about Palliative Care: What it is and what it isn't. We'll answer questions and dispel myths about palliative care for lung cancer patients. Be part of the conversation on Wednesday, April 4, at 8:00PM ET. Use #LCCaregiver to join or follow the conversation. For more information about palliative care, visit LUNGevity's Lung Cancer 101 website.
  7. 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.
  8. Let's talk about lung cancer and nutrition with the experts from Savor Health! Join LUNGevity for a special Twitter chat on Wednesday, March 7, at 8:00 PM ET. Use #LCCaregiver to follow or join the conversation. All are welcome!
  9. Do you want to learn how to become an empowered, informed lung cancer advocate? Join LUNGevity Wednesday, February 7, for a Twitter Chat about Caregiver Advocacy. Join or follow the conversation using the hashtag #LCCaregiver. Lung Cancer Caregiver chats are hosted the first Wednesday of every month from 8:00PM - 9:00PM ET.
  10. HI All, To be honest, I'm not sure exactly what I"m doing here or what I'm seeking from this site other than a bit of comfort and maybe to read others stories and share in the community of people who are also walking similar/the same path. Maybe someone to validate my feelings occasionally as I oscillate between sadness, happiness, intense anger, sentimentality and all the feelings in between. I come from a long history of cancers (not all lung) on my Mom's side of the family. My Mom is one of eight and of those eight two are living (my Mom and her brother). Of those that have passed, 4 out of 6 have died from cancer. The oldest of her siblings was only 73. Out of the 4, 3 of them didn't make it out of 6 months post diagnosis and only one made it to treatmand ent. My Mom started smoking when she was 11 years old. When she was diagnosed with COPD in 2010, I begged her to quit and stop/slow the progression as much as possible. I, too, was a smoker at the time and we had already lost my two of my uncles to cancer. I didn't want her to get sick. As a measure of solidarity, I quit smoking on her birthday that year and I've now been smoke free for 7 years, except for two single cigarettes over the course of that time. I'd been predicting my Mom's future for years but could not get her to quit smoking. On December 8, 2016 I was in the UK traveling on business. My Mom, who's family nickname is Tuffy, had been struggling with what she thought was pneumonia for a while. Getting her to go to the doctor at the time was no small feat of will and she kept telling us all she was fine even though she was having pain. The pain got severe enough in her chest/shoulder/arm that she thought she might be having a heart attack (although possibly the longest heart attack on record) and went to the doctor while I was away. She called me while I was away to tell me she was going. She then called me later to tell me she did have pneumonia, but they found a mass in her lung and that they were going to send her for a biopsy. I was a wreck. I was nearly 3,500 miles away and felt totally helpless and deep in the pit of my stomach I knew what the news would be. I can remember calling my last surviving uncle that night (after having more wines than I should with colleagues at a couple of pubs) and just sobbing that I didn't want to lose my Mom and I didn't know how I was going to be strong enough to go through this with her. I completely came unraveled. My Mom had the biopsy and I traveled back a few short days later on December 10, 2016. On December 15, 2016 her pulmonologist confirms that it is in fact cancer. Adenocarcinoma NSC. He wants her to come back for a test to determine her lung capacity and sends her to a top thoracic in the area. The lung capacity test shows that she's not a good candidate for surgery. She also can't have surgery because she is still smoking and they are concerned the cancer has spread to the chest wall and its in a lymph node near her heart. He refers her to see an oncologist for treatment options. We have a great one local we know from another family members cancer journey and get an appointment with her. Fast forward to our appointment with the oncologist in mid January. She stages my Mom at about a Stage II MAYBE Stage III. The oncologist is ready to start her for treatment in the coming weeks and sends her for a precautionary brain scan since the PET scan doesn't cover this. The scan was done on January 23rd. On January 24th, I received a phone call that they found something in my Mom's brain and we needed to go immediately to the neurosurgeon for evaluation. The news is promising in that it's one tumor and a candidate for surgery. My Mom is admitted to the ER that night and has brain surgery the next morning. She does fantastic. All her doctors can't get over how well she did and how she didn't show any symptoms of the tumor prior to the scan. Immediately, my Mom is now a Stage IV lung cancer patient. After recovering for a bit, she starts chemo and radiation. Chemo is carboplatin and pemetrexed. The Neulasta makes my Mom violently ill so they have to switch her to neupogen so she can sustain treatment. During this, Mom goes through genetic testing to determine the mutations she displays. None of them are available for targeted therapies. At this point though, I don't know what genetic mutation she has. She also goes in for a Cyberknife treatment on the area treated on her brain. Mom finished chemo on June 8th. She went for her follow-up PET scan on July 15th. On July 19th we are informed that Mom is in remission. No active cancer, all post treatment disease. We are elated and I book our trip to Florida that I promised I would take her on once she finished treatment and beat this (my mom from the start said she wouldn't let her take her down. She was fighting - and she did. Not once did she complain or look for sympathy. She just did everything with such grace and strength I could be nothing but amazed. I was pretty convinced if it were me I'd be in a pile on the floor somewhere). We went on that trip the first week of October of this year and it made some of the best and happiest memories I have with my Mom in my adult life. We had the most fun we've had in a long time. We even went to Disney and met Mickey Mouse (something I hadn't done in my childhood). She's still smoking. She's also had 2 follow-up brain scans since surgery and Cyberknife and everything looks great (side note: her neurosurgeon is probably the best doctor aside from her oncologist I've ever encountered in my life. I literally could just hug this man every time I see him) Towards the end of the trip and when we got back, she started to feel sick. She kept saying it was just a cold. By mid October, pain had returned. She went to her PCP, who said she just had a respiratory infection and put her on antibiotics. The antibiotics don't help. At her follow up with her oncologist to get the appointment for her next PET Scan, the oncologist orders an Xray. The results come back that it looks like pneumonia in the lung. She follows up again with her PCP who gets another Xray and then tells her that its just bronchitis and puts her on Levaquan. She has a massive negative reaction, calls the oncologist who then prescribes Doxycycline. She does much better on that but the pain isn't going away. According to her PCP, there's nothing in her lung except the bronchitis. She went in for her PET scan on Saturday, November 18th. We got the results on Monday and it shows that her cancer has returned. Two masses in her left lung along with multiple nodules in both. Thankfully it's spread nowhere else. We met with the oncologist yesterday who wants Mom to go through a second line treatment of chemotherapy with Carboplatin, Abraxane and Avastin. 3 weeks on, 1 week off for 3 months. She said her third line treatment would be some sort of immunotherapy although they are not sure how effect it will be since she doesn't have PDL-1. I did find out during this appointment that her genetic mutation is KRAS. The "mama bear" daughter in me who wants to know everything (boy am I naive) and has an eternal thirst for knowledge made the mistake of looking it up last night around 11 pm EST. Needless to say I didn't sleep very well. I need to take my own advice as I always tell people "Google is not your friend". My Mom has said she is finally going to quit smoking but I don't have much faith. Not that at this point it's going to stop anything but it certainly isn't going to hurt. I'm a whole whirlwind of emotions - I'm mad at her that she is putting smoking before her family and her health, I'm sad that she has to fight again. I'm proud of her for fighting as hard as she had and not flinching when they told her she'd have to go back through treatment. I'm worried for the future. My sister lives with her with her two kids and significant other as well as my Dad. I'm single still with no children and that weighs heavily on my mind as well. I constantly battle with myself feeling like I should be doing more. There's a part of me that wants to find some way to volunteer at a local cancer center or organize a charity event for cancer research. I spend time wanting to scream and wanting to just literally never be away from my Mom for another minute while she's here. This seemed like a safe place to explore and look for support from people who are going through the same thing. I'm sorry for the lengthy post. Things are still very raw for me. I look forward to being a part of the community here. Maigan
  11. We are excited to announce that Steff will be moving into the role of Moderator for the Just for Fun forum! Steff joined LCSC in June and she's been an invaluable member of this community. Thank you Steff for sharing your experience and helping others navigate a lung cancer diagnosis in their families. We look forward to seeing you shine in your new role! Lauren -- Digital Community Manager LUNGevity Foundation
  12. 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 [email protected] and reference FACP/SCLC
  13. 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
  14. 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
  15. I noticed something recently at the in-person support group I facilitate. Caregivers in my group didn't speak up about issues or feelings unless the facilitator or group leader mentioned them first. "Like Jan said, I have feelings of ____ too." After the third time, it occured to me that caregivers are either waiting to have their feelings validated by someone else or didn't realize they had been feeling those feelings. I remember being a caregiver for my father and how all-encompassing that was. Nothing else mattered to me at the time. Everything was about my dad's cancer, his feelings, his happiness, his peace and comfort. I don't think I got more than 2-3 hours of sleep a night during those 11 months- there was just so much to do! I completely lost myself and any sense of "me" during my caregiving. I would never consider taking time for myself, taking a break or openly expressing my frustrations and concerns- that would be selfish- afterall, I wasn't the one in treatment with cancer. I wasn't the one fighting for my life, right? If given the opportunity then, would I have taken advantage of caregiver resources or support groups? Would I even know what I was feeling or how to describe it? Until we are able to have caregiver-only support groups in every community, how can we give caregivers the encouragement or "permission" to put a voice to what they are feeling? How do we as caregivers divorce ourselves from the guilt that accompanies self-care? Thoughts?
  16. 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!
  17. What is the role of a care partner? Katie Brown, Certified Patient Navigator, and Sarah Rosenbloom, licensed clinical psychologist, give credit to these unsung heros by explaining the extent to which they go to support their loved one diagnosed with lung cancer. Tune in to find out more. https://www.patientpower.info/video/why-we-need-to-celebrate-lung-cancer-care-partners
  18. 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.
  19. 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
  20. 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!
  21. 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 [email protected] 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.
  22. 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
  23. 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
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    On Saturday, September 10th, in Chicago, Illinois, Patient Power and LUNGevity will hold a free in-person town meeting at Robert H. Lurie Comprehensive Cancer Center of Northwestern University—one of the world’s most respected centers recognized for providing exemplary patient care and innovative advancements. At this meeting, you and your loved one will hear the latest in both research and treatment from leading lung cancer experts. The meeting will also be broadcast live online. During this interactive town meeting, you will have the opportunity to meet and connect with medical experts, other patients, survivors and care partners touched by lung cancer. Our hope is that participants will pool their knowledge, so you can gain more insight and become more empowered to make YOUR best treatment choices in lung cancer. Please join us in-person for this FREE interactive town meeting to learn: What information do you need UP FRONT to make decisions about treatment? Who is biomarker testing right for? How might I get information about clinical trials? How to live your best life with lung cancer How to cope with financial, emotional and lifestyle issues Tips and resources for care partners Our expert panel will take your questions, and patient advocates will be on hand to offer support and connection to a variety of resources. AGENDA 9:30 - 10:00 AM Registration | Connecting With Other Lung Cancer Patients and Care Partners 10:00 - 10:45 AM Current and Novel Treatment Options for Lung Cancer 10:45 - 11:30 AMUnderstanding Biomarker Testing in Lung Cancer 11:30 - 11:45 AMMeet the Patient Panel 11:45 - 12:30 PMLunch Provided 12:30 - 1:00 PMResources and Strategies for Living Well With Lung Cancer 1:00 - 2:00 PMInteractive Q&A Session *All times listed are for the Central time zone. For more information, or to register online, click here.
  25. I recently read a quote from a cancer survivor about online support. "When I stumble, there are so many virtual hands to catch me.” This is the same sentiment that has been expressed about LUNGevity’s Lung Cancer Support Community and the many support groups on Facebook. People impacted by lung cancer can come online and be embraced by others who have walked the same journey and who understand what they may be going thru. There is power in the written word and from receiving support from a group of people. Building a community of support can help you feel less alone in the cancer journey. But there are times when people need more. For example, newly diagnosed patients and their families often feel overwhelmed with the medical process, uncertainties and fears and they need additional support. Some people are not active social media users. Some people need more than virtual hands to catch them. What they need is a strong hand to hold onto. Those are the people who benefit from the personalized support of LUNGevity’s LifeLine Support Mentor Program. The program, originating from the Lung Cancer Support Community “Support Buddy Program”, is in its 14th year of helping people. Based on individual needs, LifeLine has supported people online, through email and by telephone. A personalized match is made between a survivor mentor and a patient and they begin their supportive relationship based on commonalities whenever possible, like age range, gender and stage and type of lung cancer. LifeLine also matches caregivers and family members to other more seasoned caregivers and family members. Oftentimes caregivers and families bear the brunt of the responsibility of caring for their loved ones physical, emotional and financial needs and neglect caring for themselves. Those caring individuals we call co-survivors need support too. We’ve matched survivors, patients and caregivers from across the country. We’ve matched people at our annual HOPE Summits and we are a resources for many hospitals, clinics and social workers. Here’s what one support seeker said. “It’s amazing. I never knew anyone with a lung cancer diagnosis, now I’m matched with someone like me who has survived these same treatments. She gives me so much hope.” If you or someone you know has been impacted by lung cancer and would like to request a LifeLine Support Mentor or if you would like to volunteer to become a LifeLine Mentor, please visit www.lungevity.org/lifeline Visit our website here if you would like to request materials.
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