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  1. In June I was diagnosed with Adenocarcinoma 2A that was 4.3cm in size. Five weeks ago I had the top right lobe removed, together with associated lymph nodes. Scans show that the rest my body is clear. I also had a cancerous prostate removed 3 years ago and bypass surgery 17 years ago. According to my oncologist, because of the size of my cancer, I’m a borderline case for needing chemotherapy and he wants me to decide. The chemotherapy would be three sessions per month for 3 months, with unknown potions. I’m 74 years old, never smoked, fitter than average, below average weight, no other health conditions and bald, so hair loss is not a problem.
  2. I am 57 years old and was just diagnosed with adenocarcinoma in my left upper lung. Had a needle biopsy last week. This whole thing was out of the blue. My rheumatologist retired and I had to see a new one. She did a routine set of xrays including chest. Thank goodness she did. I had no symptoms at all. Right now, I'm waiting to see a thoracic surgeon. Hoping it will not be a long wait - my left lung is now collapsed and shortness of breath is happening. This is a complication from the biopsy. They are talking about a chest tube, but want to see if they can remove whatever portion of the left lobe necessary at the same time. Also need to take lymph nodes for staging. I'm at a loss right now. My dad died of lung cancer 3 years ago and I can't believe it is happening to me. I've been retired for 2 years and my husband just retired. We bought a place in Florida so we could be snowbirds. So looking forward to our 1st season out of the Northeast winters. We are hoping for a good outcome, but just blindsided by this. We should know more after we see the thoracic surgeon.
  3. Hi, I was diagnosed in January 2018. I thought I had pneumonia but an X-ray showed a mass and plueral effusion on the right side. I had surgery in April to remove the pluera on the right because it became infected. I take Tarceva and I am dong much better. The tumor has shrunk by half and other nodules are less visible. I am 53 years old and smoked when I was 15 for about 10 years. Lately, I am struggling emotionally. any encouragement would help me .I don't have much of a support system. I try to hide my fear from my daughters and husband. My daughters all in their 20s but I still feel like I need to protect them.We are very close.
  4. Hello, this is my first post. My dad was diagnosed with Stage 4 lung cancer, non-small cell, adenocarcinoma the end of July. They found 10-13 lesions in the brain, one area on the adrenal gland , one on the spine , and possibly a small area on the liver. My dad had 2 weeks of radiation on the brain immediately. Before treatment, he got very unsteady and had a drop foot. After radiation, he got most of his coordination back. He had palliative radiation to the place on his spine for pain. Last Monday, my dad's oncologist put my dad on 2 chemo drugs (not sure the names at this time) and ketruda (immunotherapy drug). His oncologist said this was recently approved by the FDA to give both at the same time? I really haven't seen any info about this. I am just wondering if this is a new thing, or are they throwing all of this at my dad at once thinking he don't have much time and this is his best option? Thanks.
  5. Hello All, My name is Kaya. I am here because I rec'd the shock of my life the other day, that my father in law is in stage 4 of a metastatic cancer most likely an adenocarcinoma, which has caused his lung to collapse and made it necessary for him to be placed on a ventilator. He was not healthy previous, but we just were NOT expecting cancer, at all. He developed a nagging cough. When he told me about the cough, he said he thought it was a cold, but this cough never went away. And although he never did have any symptoms of a 'cold' we all believed that it probably was just some kind of cold/allergies/cough, and left it at that. That cough eventually led him to being unable to take a breath one morning this past week, and he ended up in the ER with what we all thought was 'pneumonia'. He sounded terrible that morning. The ER docs told us that had to intubate him because his lung was collapsing. And right after they did the procedure, his heart began to have terrible arrhythmias and he went into cardiac arrest in the ER. During the time in the ER they were able to do a few imaging studies, Xrays, CT's and they told us they thought they saw a mass on the outside periphery of the Upper Lobe of the Rt. Lung. But they were so occupied with the Heart issues we quickly put that out of our minds, and along with the docs, concentrated on every word they said about what they would do next to try to save his life. Eventually he made it to the CCU and there eventually his heart was stabilized with a pace maker. He was however unable to be taken off the Vent. The docs said that they tried to reach the mass for biopsy and could not reach it. They believe that the mass is causing the lung to fill up with mucous (adenocarcinoma) and that it's size may be contributing to the collapse of the lung. Each time they tried to remove the Vent tube, my father in law would have problems breathing and have a serious arrhythmia and so they are pretty well telling us now he will have to be weaned in a nursing home situation (if possible). They said they can do no more for him at the Hosp. At one point I asked why they couldn't try radiation to shrink the tumor, just to shrink it so that we could try to remove the respirator, so he could die without being on this horrendous machine, but they said while they do palliative radiation, because he is so sick, they will not do it for him. Also they told me since he is on the vent, they would not be able to administer the radiation via CT scan which is how they do it, so essentially I feel like we are being told just take him to the nursing home to die. He is struggling on this machine. I feel so horrible for him. The other thing I feel is so much guilt. Because I am a Healthcare professional, I have been so involved in his care. HOW did I miss this? I am so angry that I did not follow up on that cough. I mean on the one hand he had been very ill with neurological stuff that I had to help him with and heart issues which were very complex, and he has been in a wheel chair for over 10 years so his healthcare is difficult, but still, I feel in a sense, like I have failed our family and him Thank you for listening. I just needed to get this out. I also want to know if anyone has any experience with getting palliative care even in a situation like this, where the for instance the palliative radiation may be dangerous for the patient? I just feel like what do we have to loose? If he is willing to try it...
  6. Hello all. New member here. LynnA. Glad I found you. Just got DX. Although the cancer, Lung Adenocarcinoma, has been in my lungs since at least 2014. If anyone knows anything about this kind of cancer I sure would appreciate any information that you can share about it. My managed care plan found it back then but told me it was just scar tissue. Said they would keep an eye on it. NOT. BUT, I finally found a better medical center and they got on the ball immediately. I got hit with asbestosis in 2006. I was a quartz fuser for the micro electronic industry for 12 years (the 1970's). I've been fortunate for ten years. Cancer free, I thought. Talk about Murphy's law, my artwork is finally taking off. I'm getting into galleries and this hits. LOL But I'm a fighter and still have a lot of art in me. I do a PET scan tomorrow to find out what stage I'm in. I'm a little frustrated with my Pulmo. She told they were getting me right into surgery to get the cancer out. Now they are doing the PET scan first to see how far the cancer has progressed. I found that out by accident when I called her office. I need to let her know that I would like to be kept up to date on any change that pertain to this process. And so it goes..... the work begins. Lessons on assertiveness. Criminy, I'd rather make art and play guitar. But I guess I can do all three. Learn, make art, and music. How long I can do so depends on me, I'm a fighter, and what little surprises they find in my body tomorrow. It is what it is. Thank you for listening.
  7. Hi - I just got diagnosed two weeks ago with adenocarcinoma. I had been diagnosed with pneumonia for a couple of months until a follow up x-ray showed spreading in the lungs and a CT scan was ordered and a pulmonologist did a bronchoscopy. I had to insist on doing biopsies. I wanted to find out why my cough wasn't getting better and my chest hurt when breathing. So here we are, two weeks in. I've had a clear CT brain scan, waiting for PET scan results and molecular studies/pathology. I have seen the oncologist exactly one time not even a week ago. He told me that surgery isn't an option. It is spread out and affected tissue doesn't appear to be tumors. Surgery wouldn't leave me with enough lung to survive. I am told we will be able to do targeted drug therapy. This isn't what I was hoping for because I was hoping it was something that could be removed. I am scared out of my mind, but lots of people keep saying that drug therapies have made amazing strides. I have seen a few other similar posts, and hoping to connect regarding drug therapy and it's effectiveness.
  8. 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
  9. Hi Everyone, I have adenocarcinoma in my LLL. I was originally diagnosed in 2009. It was an incidental finding. I went in for a breast MRI due to family history. Dr. called and said breast were fine but my lung needed further testing. I had a wedge resection by VATS. Surgeon has been following nodule since 2014. PET in May had SUV of 4.8. New surgeon (last one retired) didn't want to operate. Tumor board agreed SBRT would be best option. I had 5 treatments in June. Just had a CT, no change. I am currently waiting for an appt. with the ONC who is a lung tumor specialist where I have been going for the last 3 years. I am wanting to share with others who will understand my anxiety on this journey.
  10. Hi. My dad - a long-time endurance athlete and outdoorsman, non smoker, vegetarian, age 72, still working full time as a general dentist - was on a long bike ride two weeks ago when he had chest pain that sent him to the hospital. Long story short, an angiogram found 6 major blockages and he had a quadruple bypass the next morning. We were all flabbergasted as he's so healthy, but heart disease runs in his family and his sister had the same procedure about 15 yrs ago. Anyway, while the cardiothoracic surgeon was performing the surgery, he found and fully removed a 1 cm nodule on my dad's lung, and the pathology came back as a stage 1a adenocarcinoma (with clean margins). Can you imagine laying there recovering from major open heart surgery after a heart attack and then getting that news?? He had an MRI of his brain at the hospital which came back clear, but he can't have a PET scan for a few weeks as his chest has to heal. I am not positive but I don't believe the cancer can be fully staged until he's had the scan to check for any other potential incidents? We're all looking at this as a lucky(ish) accident as the cancer never would have been detected at this point had he not had a surgeon literally looking at his lungs, and we're hopeful that the scans come back clean, but it's just a lot to take in. He's recovering at my house and eating an organic, plant based diet, getting lots of love and support from friends and family, but we're all scared (although optimistic and upbeat). We have cardiac rehab starting soon and then have to get started with the oncologist...I know this is a marathon not a sprint and we've barely begun...just looking for a community to hear our story and a safe place for me to unload. Any and all advice and/or words of encouragement are welcome. Thanks for reading!!
  11. Good morning. I just wanted to say thank you to all who participate in this forum, whether it's a post, a response, or silent prayers and good thoughts from your home. I sign on every day to read how others are doing, and to see if I might share experiences to help others. This sight became my lifeline last spring and it's through this site that I discovered that a recurrence is not the end of the world, but merely a bump in the road. I think of you all every day, send prayers, and cross fingers and toes for good results. Thank you!
  12. Hi All, I am new here. Hoping to take a break from googling and actually get some advice and hear stories from those who have actually been through this before:) My mom was diagnosed with stage IIIa adenocarcinoma yesterday at Johns Hopkins. She was originally told about 1.5 months ago that the mass she had(less then 1 cm) was operable and stage 1. Had PET scan to confirm no additional metastasis. She went to thoracic surgeon to schedule surgery and was told he had to do a bronchoscopy and medianoscopy to "confirm" there was no cancer spread in lymph nodes. Well, results came back and there were microscopic cancer cells in one out of 6 lymph nodes in her mediastinum. This is considered single station lymph node involvement from what I understand. So her dx went from 1A to 3A which has been really hard. But we are moving forward and she had her second opinion appt yesterday at Hopkins and that is where we will stay. They are recommending chemo (carboplatin and Alimta) once every 3 weeks for four rounds. After that she will have scans to confirm the cancer has responded appropriately and then they will move forward with a lobectomy. If the samples they send off after surgery contain cancer cells, they will then do radiation. The reason they are unwilling to start w radiation right off the bat in conjunction with chemo is because she has a history of autoimmune disease and radiation can be really rough on people with preexisting AI disease. They did say afterwards if there is cancer remaining, at that point the benefits of doing radiation would outweigh the cons. Wow, that was long winded! I apologize. I was wondering a few things. First, if any of you had a similar diagnosis (stage 3A with microscopic single stage locally advanced spread). Second, if you did, what was your treatment plan. Third, even if you didn't have same diagnosis, has anyone done things in the same order? I would appreciate any and all comments:) This has been tough on all of us but we are grabbing the bull by the horns and moving forward!
  13. Just a post to vent......I'm mentally and physically exhausted. I have finally hit the wall with this round of treatment. I endured chemo (cisplatin/pemetrexed) last year, but that cycle was a little more forgiving; one long day every three weeks. This round, I've had daily radiation for almost 6 weeks and weekly chemo (carboplatin/taxol). The chemo side effects aren't as bad, but I guess the daily grind of radiation, with the weekly chemo, and the fatigue have finally knocked me down. I'm also starting to lose my hair and Super Doc told me I'll have two more rounds of chemo in June and those two treatments WILL take the rest of my hair. I thought I was mentally prepared to lose my hair, but I wasn't. It's starting slow but at some point, I'll take matters into my own hands and just shave my head. But then I remind myself that I told Super Doc I'll do whatever it takes to beat this, and losing hair is just a casualty of this war. Thanks for letting me vent. Sometimes just putting it in writing helps me, especially because I know you've all endured this and so much more.
  14. I was diagnosed with lung cancer in August of 2011 out of the blue, totally unexpected. I went for a regular checkup after experiencing some gastric reflux and abdominal pain. The doctor suggested an abdominal CT scan. He called me back into his office and told me that, although the scan was of my abdomen, a part of my lung had been included. A little shadow had shown up there that concerned him. He asked me to undergo a second CT scan, this time of my lungs. That scan revealed a prominent area of masslike consolidation in my left lower lobe. The next day I saw my pulmonologist, who scheduled me for a needle biopsy. At the time, he didn’t think that the scan findings really indicated a lung cancer. I was not concerned either, as I had never smoked and had little history of cancer in my family. I was traveling home from a visit with some friends when I got the call from the hospital. The emotional voice on the other end was cracking. I didn’t even realize that it was my pulmonologist. He said, “We got the results from your biopsy. You have a very large tumor taking up most of the left lower lobe of your lung. We have to get this right away. We’ll get through this honey.” It was surreal. I thought it was a mistake. I was diagnosed with non-small cell adenocarcinoma. They scheduled surgery right away to remove a lobe of my left lung. That was followed by chemotherapy. It was a very tough time. After I recovered from that surgery and the chemo, I just wanted to go back to my life. I’d been very happy with my life. I was a volunteer chaplain. I didn’t know any other survivors and I didn’t want to think about lung cancer anymore. They said I only had 15% chance of the cancer coming back so I wasn’t going to worry about it. A year later, the cancer came back. Looking at the scan, I felt like I was in a nightmare. The second surgery to remove the rest of my left lung was easier, because I knew what to expect. But after that surgery and treatment, I knew I needed to get plugged in and started searching online for an organization that could help. I liked that LUNGevity Foundation was constantly posting helpful information and seemed focused on survivors. Before I was diagnosed with cancer, I had enjoyed the experience of mentoring, so I applied to be a LifeLine support partner. Nikole from LUNGevity reached out and invited me to attend the HOPE Summit survivorship conference. One of my friends went with me and we had such a wonderful time. HOPE Summit changed my life. Before that time, I had been pretty isolated as a survivor. When I walked in and saw that many survivors, I was amazed and overwhelmed. Hearing others share their experiences changed my whole attitude. The main thing I came away with after HOPE Summit is “be your own advocate.” My amazing friends that I met through LUNGevity connected me with my current doctors at UT Southwest. Any time that you need support from LUNGevity, it is available. I am a LifeLine mentor to other survivors, but I also have LifeLine mentors who have helped me through two recurrences of cancer. They’ve really inspired me and kept me looking forward. Mentoring is a two-way relationship. If they’re feeling down, I can help them and if I’m feeling down, they can help me. It is so rewarding. I’m also a LUNGevity Social Media Ambassador. I’m a big believer in the power of connection. If we isolate ourselves, we focus more on the negatives and everything that’s wrong. But if you’re out there connecting with other survivors, you’re sharing the ups and the downs, you’re not alone. It really helps. The advice I like to share with other people who have lung cancer is if you don’t like what one doctor says, it’s very important to be your own advocate. It’s your life!
  15. Greetings Friends! Last Thurs I had a biopsy of the mystery meat in my left lung and the results have came back as adenocarcinoma, non-small cell lung cancer, not melanoma. So the plan is to have surgery to remove the lung lobe with the tumor "Larry" in it and some lymph nodes If the cancer has not spread to my lymph nodes, then surgery should be all that I need. If it has spread, then I'll need more treatment, but I'm getting ahead of myself. Just trying to stay in today but this is all I know. The hospital is organizing all that is needed for surgery, but it's not an emergency. Any words of wisdom in getting through a VATS Lobectomy? Thanks! Shalom, Julie
  16. My spouse was diagnosed almost exactly a month ago. Went in for ER visit believing it was a kidney stone causing pain in pelvic area. Through extensive tests and second opinions, it came back as stage 4 non small cell lung cancer (2.6 cm mass) with bone mets to the right pelvic bone (2.7 cm mass). shes currently finishing round 1 of chemo- alimta and carboplatin. The next round will add avastin. Four rounds total followed by radiation. As hopeful as I try to be, she is very doom and gloom. The dr talked at the last visit of when she is remission, and I take that as a sign that the team of Drs wouldn't talk of remission if they didn't believe it was possible. Biopsy of pelvic bone done at ER visit came back as not being The mutation suitable for tarceva, and confirming adenocarcinoma. He talked that if after remission she would relapse the next step would be opdivo. At the initial appointment, she was told that without treatment she would have six months to live. I guess what I am seeking is advice from other spouses/caregivers on how to keep it all together everyday. And if anybody has any survivor stories that they are willing to share- to possibly help her keep hope that there are tomorrows.
  17. Hello, my name is Christine. My, 71 yr old, Mother was diagnosed in Nov 2016 w/ Stage IV metastatic adenocarcinoma NSCLC (primary: right lung, spread to both adrenal glands, brain & right proximal tibia). At diagnosis she was given an estimate of 6-12 months to live, which was quickly adjusted to 6 months after they discovered 13 brain mets opposed to the 3 they originally saw. She had surgery to remove the tumor in her right tibia, which they filled with bone cement to stabilize the bone. She has completed whole brain radiation, radiation to the right tibia & 2 rounds of chemo: Paraplatin (Carboplatin), Alimta (Pemetrexed) & Avastin (Bevacizumab). The chemo was unsuccessful. The cancer spread to multiple bones in her left leg, her pelvis & spine. They stopped chemo & started Opdivo last week. It is too soon after completing whole brain radiation to do another brain scan to know if it helped. I'm sorry for the information overload....I'm just trying to give as much info as possible to see if anyone here has a similar situation & could offer some words of wisdom, offer a glimpse of hope or suggest ways I can help her. Thank you in advance for your help.
  18. I had a pet scan yesterday as a follow-up to my CT in February. As suspected, a lymph node near the aortic arch lit up. But nothing else lit up so that's reason enough to do a happy dance. I'll have a surgical biopsy to confirm it is adeno (same as primary tumor removed last year) and I will have a port put in. I have 6-7 weeks of concurrent chemo (carboplatin and taxol) and radiation and I am not about to endure that without a port. Doc will also send me for an MRI just to confirm the brain is still clear. Doc knows I have a trip planned for Hawaii at the end of May so he's trying to get this started so I can finish in time to take my trip. I will probably feel pretty crappy by then, but I'd rather feel crappy sitting on a beach. I was a little sad on Saturday - I presumed the misbehaving lymph node was cancer. I was a little sad today and then mad, but now? Let's get this fight started. I've already had 13 months since my initial diagnosis and that's pretty damn good. I'm ready.
  19. We met with my oncologist yesterday to discuss the recurrence of NSCLC in my right supraclavicular lymph node. The thoracic surgeon who performed my lobectomy agreed to perform this surgery, and I'm scheduled to consult with him on March 9th. The results are back on the tumor testing. It tested positive for ALK. The oncologist talked a bit about the drug crizotinib as a possible future treatment.
  20. Hi - I'm joining this forum to find out more about Adenocarcinoma and Women that never smoked. My mom was diagnosed on 11/29/2016. That day changed our lives. My mother fell and broke her femur and once we rushed her to ER the doctor reviewed her x-ray and said her femur should never break that way. From there he ordered a CAT scan which showed lesions on the femur. The next response from the doctor was it didn't start there, so he ordered an upper body scan which found it in her lung (source) however it was also in her spine, and ribs. Mom has had surgery since to repair the femur but recovery is not the only obstacle. The emotions of knowing you have cancer in so many places are overwhelming. In early December they determined she had it in her brain as well. They did WBRT for 10 sessions and she didn't have any side effects until a week after, where she lost her hair in one night and her scalp became very tender. Doctors recommended Aloe Vera and Aquaphor to soothe the skin. We just applied it yesterday so we're hoping it helps. Mom was informed that she does have the EGFR mutation which allows her to have the chemo pill rather than standard chemo. We're hoping the side effects won't be as extreme as traditional chemo. Has anyone taken Gilotrif and had positive (or not so extreme effects)? Can you give me some background or suggestions? Background on Mom: Mom is only 72. Thankfully, mom is a very strong woman she has pain but tries not to complain. She was semi-active before the fall and only noticed what she thought was arthritis pain or osteo pain from aging. She hasn't lost a pound she still has an appetite and after WBRT some of the cognitive thinking and some memory patterns returned, but depression keeps creeping in from time to time. I'm confused about a few things. I read a lot on this version of cancer and it's astonishing to me that one article stated it is now the #1 cancer for women. Why hadn't I heard of this before? Why aren't women warned? We're warned not to smoke but this cancer affects those that don't smoke. What kind of warning could people that don't smoke have received? I'm devastated that my mom is going through this. We have to keep our faith in God and sometimes we won't understand until later. Any suggestions about anything helps. Thanks for reading!!
  21. 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. I posted about my tissue biopsy and I received a private message from my friend Bonnie J. Addario the founder of the Bonnie J. Addario Lung Cancer Foundation, 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 Blume 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 Lung Cancer groups like the Lungevity Foundation, Team Draft and involved with Lungevity Foundation Lifeline support program which is one on one support for newly diagnosed patients. 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 Dr. Jeffery Engelman at Mass General Hospital for a second opinion. Dr. Engelman reviewed my reports and agreed with my decision that Opdivo (Nivolumab) was my next best option; I am now on my eighteenth infusion and feeling great and again have stable disease. 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. Be well, Don Stranathan Stage 4 Lung Cancer Survivor
  22. I don't know about the rest of you, but my costume for this year is LUNG CANCER SURVIVOR! I'm planning to wear this same costume (which consists of a big smile, an appreciation for my medical team, and a great attitude) for years to come. Enjoy your day!
  23. I finished my chemo last Friday and got to ring the bell! But now the hardest part starts for me - waiting for the first post-treatment CT scheduled for July 1st. I'm an anxious person on a good day, so I would love to hear how any of you survive the period between scans. My wonderful oncologist said that if the CT is clear, I won't have to have another one for 6 months.
  24. I am going to be setting up a booth to bring awareness and raise funds for Lung Cancer at local fairs and festivals. My booth will provide information, bandies and a donation bucket. I have acquired a small list of venues to set up my booth but would like to hear from everyone on any ideas they may have on any other settings to get our message out. I live in Mobile, AL. Thank you for any suggestions.
  25. Hi! I'm new to cancer and to this wonderful web site. Here's my story: I have had asthma and allergy issues for years, so when asthma got worse 18 months ago, no cause for alarm. When I developed bronchitis last fall, no cause for alarm. I coughed up blood in December 2015 and an x-ray revealed a large mass in my upper left lung. Pulmonologist performed a bronchoscopy and a biopsy indicated no cancer so the mass was further evaluated for bacteria and fungus. No luck, so on February 22nd I had a lobectomy on my left lung and was diagnosed with cancer. 7 of 10 lymph nodes were affected but the surgeon did get clear margins. On March 19th, I had my first of four chemo treatments (cisplatin and alimta). In hindsight, I should have requested an xray when my asthma took a turn, so that is now my advice to others. Be your own advocate. I've had too many people, including health care providers, ask me if I smoke. Lung cancer doesn't just affect smokers, and it doesn't just affect older patients. I'm a 46 year old non-smoker diagnosed with the most common form of lung cancer. I'd love to see providers take a new look at the face of lung cancer, and see it become as visible to the public as breast or prostate cancer. After all, it is the number one cancer killer. If you can't tell, once I beat this, I'm planning to become a voice for this cause!
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