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  1. Hi, my name is Darius Audryc from Singapore, and I've been fighting stage IV NSCLC / Adenocarcinoma since March 2021. I am now 30 years old. Although I have a stage IV LC, the tumour has only spread within the lung. However, I have a unique situation where my left tumour is more sensitive to chemo than my right tumour. Most of the doctors I met assumed that I might have two different type of cancers. And since the right lung tumour is more stubborn, we only did a genetic testing on the right lung tumour. Unfortunately, the result has shown that I do not have any known biomarkers. So I have less than 1% PDL1, no EGFR, ALK, BRAF, etc. My current treatment is chemo: Texotere (90mg) and immuno: Keytruda (200mg). I am hoping to learn more from people who have similar experience, which is stage IV NSCLC with less than 1% PDL1. What type of treatments have you done that is effective, and what other complications that you encountered? I am glad to learn about this community and hope to learn as much as possible.
  2. UPDATE 11/1/22: I got my results yesterday, still NED as I expected. I have now graduated to 4-month scans (previously every 3 months)! I've gotten to the point where I can tell which radiologist read my scans. Each one has a different writing style. For the first time, "a few" apical nodules in my right lung were called out, the largest being 6 mm. I was only aware of the large one, but these nodules are all stable and are not worrisome. ORIGINAL POST: Three years ago today my primary doctor told me that an Xray showed a 6 cm mass in my lower left lung. Lung cancer. You hear those words and your head starts spinning. But, she said, it's not a death sentence anymore. I knew nothing about lung cancer and really didn't believe her. I was referred to a pulmonologist, medical oncologist and radiation oncologist in quick succession. On Halloween 2019, my pulmonologist performed a rigid bronchoscopy to take tissue for biopsy and biomarker testing. The results were Stage IIIB NSC adenocarcinoma. It took time for the biomarker tests to come back in mid-November, and they showed an EGFR driver mutation. I still didn't know what that meant. November 2019 was a flurry of activity, seeing both oncologists, getting a port placed, getting dental work done and getting a bulk Teflon injection into my left vocal cord, which was paralyzed by the tumor. On December 3, 2019 I started the first of 6 weekly infusions of chemo (carboplatin and taxol) and 30 sessions of chest radiation. These treatments were not without side effects, and if I were to do it all again, I'd get a palliative care specialist on my team at the beginning. In March 2020 I started on Tagrisso for the EGFR mutation and have taken it daily since. My side effects are common and manageable. I never thought I'd make it this far but here I am 3 years later and NED. I found LUNGevity months after treatments ended, while I was still recovering. I wish I had found this wonderful community sooner, but better late than never. Coincidentally, I had my regular 3-month PET/CT scan this morning and will get results on Halloween. I don't expect there to be any changes. For anyone just diagnosed, I hope you'll learn as much as possible about this disease and all the modern treatments that are available. My doctor was right after all. I consider myself very fortunate that I have a great medical oncologist (even if he is a fan of the Phillies and Eagles) and the support of my husband, family and friends. I could not have made it this far without all of them and you!
  3. I am NSCLC stage IV and will be having a tumor removed from iliac very soon. I am considering ablation; 10 treatments of conventional radiation; high dose focused radiation over 2-3 days; and, low on my list, chemo again. I am just becoming familiar with these options -- most of which I learned from Lungevity (!) and its bloggers, and need some input, comments, knowledge -- anything that anyone's got. Also, I've heard of "CyberKnife" and am wondering if that is just a form of high-dose that can be done by other brands. I am very grateful for all I learn on these blogs. Thanks for being here!!
  4. This is a very good podcast about EGFR+ lung cancer featuring the always great Dr. David Carbone, courtesy of the Lung Cancer Foundation of America. https://m.youtube.com/watch?v=M4kIBpqWRC0&feature=youtu.be
  5. Hello. I am new here and was diagnosed with NSCLC Squamous cell type, in Sept. 2021. I am 64 years old and a very active and healthy person prior to all this I was misdiagnosed for over 9 months with Post Herpetic Neuralgia and the cancer was found by chance after my pain doctor ordered an MRI due to longstanding shoulder pain and hand weakness and a rash. A large 9 cm tumor in the apex of my right lung was found. It was not operable due to location near my spine per a neurosurgeon. Initially my oncologist gave me "months" to live and guessed my cancer was at stage IV. I started Carbo/taxol immediately but after 6 weeks (2 chemo rounds) and multiple CT scans, MRI's, a Pet scan and a biopsy, it was discovered that though the tumor was large it was isolated in the right lung with some small mets to the mediastinal and clavicle nodes but hadn't progressed as first thought. A curative intent plan was presented to me and I chose to do concurrent chemo/radiation for 6 weeks. I finished that on 1/25/21. The large tumor shrunk about 2 centimeters and the questionable lymph nodes had just about disappeared or remained stable. Just this week i pressed my oncologist about what stage the cancer is now and he said stage III. I started Imfinzi 2 days ago. My PDL-1 marker was only 2% but still an indication that it might work. (Diagnosis: 1. right apical lung squamous cell carcinoma, involving the chest wall, ribs and T1-T3 vertebral bodies. PDL1 2 %. STRATA next generation sequencing showed PTEN, CDKN2A, MLL2, MLL3, TP53 mutations and MYC amplification. 2. Pancoast syndrome) I am feeling great! Shortness of breath (SOB) is the only issue keeping me from doing all I did before this happened. It looks like I have a couple areas of my lung that are collapsed Question: 1. Does the SOB get better over time? Is there anything I can do besides breathing exercises to help? 2. I have yet to find anyone with similar biomarkers to mine. Anyone? 3. What is the difference between the ways that tumors are staged? Prior to treatment my radiation oncologist staged me T4N3 which I know refers to the tumor size ""T" and "N" 3 lymph nodes involved. How does this correlate with Stage III? I hope I am making sense. LOL! 4. Could my tumor continue to shrink with Imfinzi? I have a very positive outlook and a strong faith base.
  6. Hi All, First, let me thank you for stopping by to read this. Though my mother has been dealing with a diagnosis since January, this is the first time I have sought out a forum. My mother is a very strong and stoic and active 78 year old woman who up until the time of her diagnosis was still skiing regularly. She raised alone me after my fathers death when I was 5. She tends to be very private and though she shares with me her my chart, she prefers to see her doctor and deal with this largely between her and her housemate. Last January she was diagnosed with a progression of her previous lung cancer for which she had had surgery in 2017. On a routine mammogram they found a tumor, and subsequent scans she had Metastases to her brain, bone, breast and liver. She was given the triplet treatment of Alimta, carboplatin, and Keytruda — and now has had 3 maintenance cycles without carboplatin adding in Zometa. I seem to remember her doctor saying that if it progresses there is no treatment they can pursue — She has a very few tumor markers or whatever it is that allowed them to target mutation? her PDL1 is a small percentage and a KRASG12v mutatation. Up until now her disease has been stable but just recently they remarked a growing tumor in her liver. (It has grown a half centimeter since July). She sees her doctor today and I am just trying to prepare myself also knowing she might not share the bigger picture with me. If her brain mets and bone Mets are stable would they offer her radiation? Or surgery? Is there another line of therapy they can try? I appreciate amy wisdom you might offer! Pam in Minnesota
  7. My husband was diagnosed July 8th, 2021 with stage IV NSCLC. We attend appointments together in person or via phone. My first goal is to provide what he needs when he needs it which includes his mental health. It is imperative our knowledge is based on the most current information. My second goal is to become knowledgeable about his specific type of EGFR mutation which is why it’s imperative to be knowledgeable on his specific mutation to understand his treatment options better. My husband consistently informs me he’s unaware of the type. His doctor is very diligent and responsive. He could of simply forgotten or wants to protect me so I don’t Dr. Google everything. (Let’s face it we all Dr Google medical information all the time How do I find out? Do I ask my husband for permission to look at his MyChart? Do I ask at the next consult? Do I leave it alone and avoid upsetting him?
  8. Was a moderate, on and off smoker for about 10 years, but that was over 40 years ago. At 70 I still played pickleball, enjoyed line dancing and played lawn bowls and was generally very fit for my age. After many visits to my GP over a 15 month period for an intermittent cough, I was diagnosed with NSCLC Adenocarcinoma in March 2021 - 34mm in upper right lobe. Unfortunately, by that time it was stage IV with metastasis to lymph nodes in lung and neck, tumours in left femur and L12 in spine. I had no other symptoms and my doctors were surprised I was not experiencing any pain, particularly from my femur and spine. While awaiting the biopsy results to come through my Onc referred me to an orthopaedic surgeon as the tumour in my femur had eaten well into the bone and the odds of a break within the next 6 months were very high. In May I had a 32 cm titanium nail inserted to shore up my femur. My biopsy results came through just days before my operation and they showed my cells have the EGFR marker. The day after I left hospital I started on Tagrisso 80mg....woohoo, one pill per day! I feel very blessed with such luck. No pain, very fast recovery from operation and very few side effects from Tagrisso. I look in the mirror and find it hard to believe I have lung cancer, I feel great. All very surreal. After 4 months of taking Tagrisso the primary tumour measured 18mm. It is not known how the other tumours are going, but my Onc sees no reason that they should not be shrinking, also. As I said, I feel very blessed. I do meditate daily, which I find leaves me feeling relaxed and very positive. I see my "well-being" cells as hungry little pac men eating up my cancer. Going to give this thing the hardest kick up the khyber I can! I am still line dancing and looking forward to playing bowls when the weather warms up here in Australia. I have not returned to pickleball, but only because I would often overreach and take a tumble and, now, knowing I have a fragile femur....but I want to play again. Maybe one day. My husband is very supportive with a positive attitude. But I am pleased I have found this forum where I can chat with and learn from other people undergoing a similar experience. Cheers and positive vibes to all.
  9. Through LUNGevity, Cure Magazine reached out to me last week for an interview about 9/11 and lung cancer. As a member of the 9/11 survivor community, I've always done my best to avoid each anniversary but this year I am facing 20 years head on. I'm posting this in LC Survivors because I am a survivor twice over. The link to the Cure article is below. They also interviewed Dr. Michael Crane, a medical director of the World Trade Center Health Program Clinical Center at Mt. Sinai Hospital in NYC. The written article weaves our interviews together, but within the article there are links to our separate interviews via podcast. https://www.curetoday.com/view/-the-clock-has-not-stopped-running-on-9-11-related-cancer-incidence-20-years-later I do caution you that any discussion of 9/11 can be upsetting for some. It still is for me, and I can't read many articles being written on this anniversary. So I will understand if you'd prefer not to click through.
  10. Journey sharing post. My 70+ year old asian mother was diagnosed with lung cancer in 2016 after coughing out blood. Initially detected tumor in one side of the lung. Was given some options, radiotherapy or targeted therapy (Iressa). We had hoped to remove the tumor, so we chose radiotherapy. It successfully removed the tumor, but after a few months, we detected the tumor in the other lung. So we started on Iressa. Iressa managed to control the tumor for many years, up till June 2020 when my mom started having very bad vertigo and vomiting, and progressively became very weak, had tremors, motor function and balance badly affected, brain fog etc. Many sessions with ENTs and neurologists, but they could not identify the cause. Steroids helped the symptoms significantly. We did a brain MRI, found a tumor there (cant remember the size, maybe around 5 cm). Biopsy showed that this was the tumor from the lung. Surgery was done to remove the tumor and things improved. However, after a while, the vertigo and vomiting returned. Another MRI showed some smaller tumors grew to 1cm, and did radiosurgery to remove them. The vomiting continued after the radiosurgery. The many doctors were trying to rule out other possible reasons ie bacterial/viral infection etc, but nothing conclusive was found. Oncologist suggested that there may still be very small tumor cells in the brain lining that cannot be detected by MRI and these tumor cells may be blocking the transfer of fluid between the brain lining, causing all sorts of problems. He suggested to change the Iressa prescription to Tagrisso as Iressa cannot cross the brain-blood barrier while Tagrisso has some ability to do so. We started with double dose (80mg x 2) of Tagrisso, and slowly my mother got better. She's still not her complete self, she gets tired much faster, has infrequent dizziness and vomiting, but at least she's functional now. We have reduced the Tagrisso dosage to 1.5 tablets daily, instead of 2 tablets, no difference noticed from the change. So for now, my mother is functional and does not have much of the previous symptoms anymore. She has been taking Tagrisso for 10 months now. The cost of Tagrisso is a burden but I will try to make it work. My country, Malaysia, has not authorized the use of the generic Osimertinib, and any attempts to order them online will result in warnings and potentially fines and imprisonment. I welcome questions or comments or insights. Note that my memory of this 5 year journey might be inaccurate and my understanding of the doctors' explanations may also not be perfect.
  11. I was dx with Stage 4 non-small cell squamous lung cancer in December 2018 (on my birthday) at 47 years old. My only symptom was a swollen lymph node in my neck that didn't go away after a month. Blood work only showed a slightly elevated calcium level (should be between 8.6 and 10.4mg - I was 10.6)...normally wouldn't raise the alarm. However, I had a history of smoking, so my doc suggested a CT scan. The CT scan was from my neck to top of lungs. It showed a mass in my right lung. Doc then sent me for a biopsy of the lymph node & it showed NSCLC squamous. Next up, PET scan...was only in my lung and lymph mode. Onco put me on Keytruda because my PDL1 was 100%. Oh, the side effects were terrible. I lost 30 lbs and believed that I was close to death. At the end of 3 months, my onco did another PET scan. Now, my cancer was on my skull, shoulder, lymph nodes, adrenal glands, ovaries, hips, femurs and foot. By this time, he had gotten back my biomarker testing. I had MET amplification with 3 others, but MET amplification was high, so he put me on Crizotinib (Xalkori). During this time, I had radiation on my hips, femurs and foot. In the middle of radiation, I broke my femur (left) and foot (right). I was unable to have my femur repaired for 3 weeks. There were no painkillers to help this pain. I didn't take a shower for 3 months, because I couldn't get upstairs. I finally had my femur fixed (had rod installed) and foot was in a boot. Crizotinib started working within a week. The lump on my skull went away. I could breathe better and my lymph node was gone. I had to cut down from 2 tablets a day to one, as I did have some side effects. I had SBRT to my lung lesion and had no side effects. It shrunk my lung lesion. In 2020, my rod in my femur failed and I had to have a partial hip replacement. I'm happy to say, I have no pain anymore & wish I would have been given that option in the beginning. I also had cryoablation done on my adrenal gland. As of today, I am 22+ months stable and I'm still on Crizotinib. I only light up some in my lung and one adrenal gland. They both may still be residual inflammation from the SBRT and cryoablation. In between these past 2 years, I had pneumonia once, pain in adrenals and c-diff which required a weeks stay in the hospital. So, hold on to hope!! Get a great onco and team (preferably a bigger university hospital or cancer only center). Do as much research as you can and advocate for yourself!!
  12. I've recently joined and posted a couple of comments to others' posts. At LouT's suggestion, I am introducing myself and telling my story. Apologies that it's a long one. In June 2019, I lost my voice and went to the doctor (not my PCP, who wasn't available), who diagnosed me with allergies and suggested I follow up with an ENT. He diagnosed acid reflux. I was on omeprazole for months without improvement, so I went back to my usual PCP in October 2019 and at that time, she heard crackling in my lung. She immediately sent me for a chest Xray and that was quickly followed up with a sinus and chest CT scan. She called me into her office on a Friday at 5 pm and gave me a general lung cancer diagnosis at age 66. Then a flurry of procedures followed in very short order, and the final diagnosis was Stage IIIB NSC adenocarcinoma with Exon 19 mutation. I went back to the ENT in November 2019 and learned that the tumor in my left lung was pressing on the nerve to my left vocal cord, permanently paralyzing the vocal cord. I had a bulk injection of Teflon into my left vocal cord which has given me a partial voice for 12-18 months. This was a surprisingly rough procedure and I am not sure I will repeat it. Both my radiation and medical oncologists planned for aggressive treatment, so I started 30 sessions of radiation and 6 rounds of chemo (Carboplatin and Taxol) in December 2019, ending on 1/15/20. About 2 weeks into radiation, I was fatigued, but worse was painful esophagitis that progressively got severe. I regret not getting a feeding tube that the chemo nurse suggested. I became severely deconditioned and was so dehydrated on my last day of radiation that I could barely ring the bell. I arranged with the chemo center to get hydration 3x per week. I wasn't able to get the right pain management at that time. On the evening of Valentine's Day 2020 I experienced severe abdominal pain that landed me in the emergency room. A CT scan revealed that I had a perforated sigmoid colon and had emergency surgery that night. I did have sepsis and would have died without the surgery. I was in the hospital for 10 days and then a rehab facility for another 10 days. Luckily in the hospital I was able to meet with an excellent pain management doctor and she prescribed methadone (later replaced by Fentanyl patch after I went on Tagrisso) for the esophagitis. After I was discharged I was still so weak but have slowly improved, and today I am lucky to be pain-free and almost back to normal. I do think my hospital and rehab care was excellent. I went on Tagrisso in March 2020 and my PET/CT scans are now showing good progress. My medical oncologist is very happy with my progress to date. So why did I get lung cancer? None of my doctors can be sure, but I was an office worker in the exposure zone in Lower Manhattan pre- and post-9/11. So I've enrolled in the 9/11 Victims Compensation Fund and the World Trade Center Health Program. I did not know that the WTC Health Program offers free annual screenings for different types of cancer (including lung cancer) and I now wish I had enrolled years ago. Anyone who is a 9/11 survivor should enroll even if you are currently healthy. I have had some really difficult experiences these last several months and am very happy to be feeling well again. My poor husband has been an excellent caregiver throughout but I know this has been stressful for him. I am vigilant about Covid-19 precautions and even wear a mask (and face shield) outside while walking my dogs--yes, it can be done!
  13. This article was posted by a member of the LUNGevity EGFR Resisters Lung Cancer Patients Group. Not only is neratinib being tested as a targeted therapy for EGFR Exon 18 mutations but also HER and HER2 tumor mutations and for other cancers. Go science! https://www.targetedonc.com/view/neratinib-is-effective-against-egfr-exon-18-mutations-in-nsclc
  14. I would like to request for help and support for my father who’s just been recently diagnosed with Non-small Cell Lung Cancer. We’ve been told we are at Stage 3B and has been prescribed with Tagrisso. We’re already one month in with this treatment and we are scheduled to have another PET scan on Jan 7, 2021 and meet with our medical oncologist on Jan 11, 2021. I have tried to read and absorb as much as I can regarding my father’s disease and found that given that my father is at stage 3b, I was wondering if we should have pursued surgery or a more aggressive treatment like chemo or radiation for him. I am also trying to understand because on his first PET scan besides his main tumor on right lung and some lymph node involvement, it also indicated the following: “Stable nodular right pleural thickening with hypermetabolic activity, suggestive of metastasis.” He does not have mets anywhere else besides what is in his right lung, lymph nodes and this pleural thickening. I have read and read a lot and most with pleural involvement say it’s Stage 4. But we’ve seen 2 oncologists and both did say Stage 3B. I guess what I think now is if we’re really stage 3B, we should be more aggressive with treatments if we can tolerate those. But I’m not really sure if we are staged “correctly”. I was advised to seek 3rd opinion from US (we’re based in the Philippines), I would love to do that but I’ve seen costs for remote consultation in Dana Farber and it’s USD 2000 - that’s equivalent to 1 month of Tagrisso here. It may seem much less than 16k cost of Tagrisso in US but taking into account our currency value, 2K USD is already a lot of money. So, I’m not sure if 3rd opinion from US can be an option for us. I’ve also read some studies wherein those on Tagrisso also receive local therapy. I’m not sure if this is an option we can pursue given that we’ve already started Tagrisso. I am just so overwhelmed and all I really want so badly now is to get the best treatment option for my father so we’ll have him for a long long time or better, he gets the best chance for remission or even cure. I’m not really sure what my question here is but if you have the same experience, and can give us much needed advice on next steps, or what to ask our oncologist next week with our 2nd PET scan results, that would be great. Thank you so much!
  15. Hello all, My name is Amber and I was diagnosed in October last year after “pulling a muscle” in my back. Turned out to be broken ribs caused by mets from Lung cancer (primary tumor in the R upper lobe with spreading to lymph nodes and bones such as the ribs, spine, pelvis, thighs, scapula). The neck of my left femur was almost eaten through so I had surgery the next week to put a rod in my thigh. No rehab!!! I realize I should have gotten rehab as i didn’t move enough after the surgery and lost so much of my range of motion and flexibility. (I’m certified in yoga and now I can’t hardly even lunge!) I got a second opinion and a referral to MDAnderson for a clinical trial of Poziotinib. I started it over Christmas last year ( i should have waited) and dealt with the side effects until Feb when a scan showed a lot of progression. It unfortunately didn’t work for me. I started carboplatin/alimta/keytruda in March and had several scares with fevers etc right when Covid was gearing up. Absolute insanity. A UTI and infected port later I changed oncologists for the third time (it was a crazy roller coaster of a ride with oncologists oct-may). Things finally settled down and I got on track with my maintenance infusions of Alimta & Keytruda. I started having severe flare ups of an arthritic nature and they became more and more frequent over the summer. I tried OT/PT but it just helped get around the pain. I saw a rheumatologist and was prescribed steroids which knocked out the inflammation and nerve pain (from arthritic symptoms from keytruda such as swollen joints). I felt like million dollars the first week or so. I was then given Methotrexate to build in my system as we started to decrease the steroid. I feel pretty good physically except after my Alimta infusion. It takes a few days to recover but it’s waaaaaay better than what I’ve previously gone through, So now I look at my life and sigh. I withdrew my kids from school as “distance learning” did not work for us. My husband hides in work and alcohol as he has always done and I’m trying to find the spiritual significance of all of this. I’m not Christian but live in a very conservative/Christian area. I’ve finally found counseling for the kids and myself but am struggling with the idea of staying with my husband. The life I have left I want to live for me. But that’s a big leap and I’m trying to find the courage to do it in the middle of this madness. Sorry, not a feel good uplifting post but it’s a nutshell of the last year. Thanks for reading and I’m happy to find a place for support and information. Have a great week:) Amber
  16. Lisa Haines

    Covid and me

    This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient. I'm sure most of you can relate. COVID and Me By Lisa Haines When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so. Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020. Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now. As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this. Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time. That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year. Once the virus hit, I stopped doing all of these things. I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left. Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash. For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life. At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID. I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation. While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad. Currently, I have 5 airline tickets that are waiting for me to use. Every day I stay Stable I am hopeful that the time will come for me to be able to use them again. I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again. I look forward to the day that Covid is a bad and distant memory for all. It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways. About me: Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs. She is Mom to two amazing adult sons, one living locally in MA and one living in CA. She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer. Her grandchildren came into her life after her diagnosis and truly were a dream come true. At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life. They are now another huge inspiration in her cancer journey. She plans to be here for many years to watch them both grow up. Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son. She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB. Advocacy has become especially important to her and it’s something she wants to pursue long term.
  17. I was diagnosed in July 2013 at age 67 with NSCLC-adenocarcinoma, with mets to my liver. At the time, there were only a few mutations that were known; my testing revealed that I had none of them (ALF, EGFR, KRAS negative). I was started on chemotherapy - carboplatin, Avastin, and Alimta. After 16 months, a new tumor was detected and I was declared chemo-resistant. At that time, there were no FDA-approved immunotherapy treatments, so I was shown several clinical trials to review and discuss with my oncologist. The trial that we selected was a phase 1 combination of MEDI4736 (now known as durvalumab or Imfinzi) and tremelimumab. Unfortunately (as there was significant reduction in tumor size), I was able to stay in that trial for only 7 months due to side effects. Within a few months, I was accepted into another trial (phase 1, oral drug code named PBF-509), which I have been in since January 2016 with no side effects other than fatigue, and stable since January 2017.
  18. Hello all, I am new to the forum and pretty new to the cancer world. I have experienced very little with cancer as my loved ones that have been diagnosed in the past were older and chose not to be treated. My boyfriend (45 years old) started having "allergies" in Feb 20. By April 20 he had signs of sinusitis but refused to go to the doctor. May 20 he started wheezing etc when he coughed. Mid May he felt so bad he stayed in bed all day and finally agreed to go to an urgent care that evening. They diagnosed him with pneumonia/suspect COVID (he ended up being negative). He quit smoking that day (partly because he didn't even have energy to get out of the bed). 9 days later, he wasn't any better so he went back and they treated him again for pneumonia. June 10 he went back again because he still felt horrible (after I begged him to go) and they sent him to the ER because they "saw something they didn't like." Due to COVID, I was not allowed to go in with him but they started working him up right away. They did a CAT scan while he was in the ER and immediately decided to admit him to do a bronchoscopy with biopsy, which was done June 12. They discharged him that day with orders to get a PET scan. The biopsy came back as squamous cell carcinoma of the lung and the PET scan came back showing the tumor being 5.4 x 5.6 in the upper left lobe. We had issues getting him in with the Dr he was supposed to see so we contacted University of Md Baltimore Greenebaum Cancer Center. They immediately put us in contact with a thoracic surgeon, who we met with 6/24. He told us that my boyfriend needed to have surgery right away to remove the whole left lung. He also said he was passing the case off to a higher up in the hospital, who we met with virtually the next day. After that virtual appointment, they had my boyfriend scheduled for all types of tests pre-surgery. On 6/26, that doctor presented the case to the tumor board and another Dr spoke up about a trial that **MAY** be able to save his lower lobe of the lung. The main symptom that my boyfriend has had is severe coughing (no blood, just occasional sputum). He declines that he is SOB but he can't walk around the house one circle without stopping to catch his breath (which he also declines). We haven't spoke with the Dr that suggested the trial yet, that comes in two days, but we already have concerns. His Dr said it would be 2-3 months of treatment and then surgery to remove the upper lobe. This doesn't solve the problem of the cough. He has been bed ridden for a week now, as it is the only way to keep the cough halfway calm. We have tried cough drops, sugar free candies, warm tea with lemon/honey, gingerale, cepacol drops, throat spray, etc. My boyfriends inclination is to move forward with the surgery ASAP so that the cough is gone, and then go through treatment. Can anyone give any advise? For those that have faced the same decisions, what did you do and would you make the same decision again?
  19. Hi all, I found a lump in my neck 4 wks ago. That led to a chest Xray, CT scan, bronchoscopy, EBUS, MRI and PET scan. Prior to the PET scan, I was told Stage III adenocarcinoma. The MRI came back clean, but the PET scan showed it was also in my shoulder. The shoulder that I have been undergoing physical therapy for. So now I'm stage IV. Next week, I see a radiology oncologist and will start 10 radiation treatments. We are waiting for results of genetic testing to see what else to do. Stage III, I had come to terms with, I would have chemo and feel awful for a few months but I could fight it. I'm in good shape. I walk marathons. But Stage IV seems so much worse - Fatal. I'm terrified to put it bluntly. The change in stage was today so I'm still processing. Thank you in advance. Jenny
  20. Hi, my mom was diagnosed with Stage 4 - NSCLC in January of 2019. Her main tumor was in her left lung and the cancer had spread to her lymph nodes by the time we found out she had cancer. Her first line of treatment was tagrisso - which was ultimately working fine until March 2020, the month she turned 50. She did have a couple of side effect issues throughout the year, but now we have gotten news her cancer is now resisting the tagrisso. She received a thracentesis and the results are that she has malignant pleaural effusion. The fluid has since come back into her lungs and her oncologist has recommended a Pleurodesis to help stop the fluid from accumulating. As for the MPE, there is new cancer on the lining of her left lung and her main tumor has grown. Her oncologist would like her to begin a clinical study of a combo of chemotherapy + Immunotherapy. Durvalumab + Platinum Doublet Chemotherapy (pemetrexed + carboplatin) I want to know what to expect as my mom has never received any type of chemo. treatment. I want and know my mom will live a long and prosperous life, but I want to make sure she is at ease and doesn't worry too much. Any advice at all is extremely appreciated. I read some of your stories and they are so inspiring and are one of the top reasons I keep strong for my mom. She's my best friend and I still have yet to show her the world. Thank you in advance!
  21. Good morning everyone, I have only written a couple times in this forum, but I have to express how deeply grateful I am for this resource. My dad passed away last Wednesday and I don't want this to worry anyone or bring anyone else's positive thinking down, but I just had to express that gratitude. Fighting cancer is so difficult. It's not a battle anyone has chosen and fight/battle seems like an inconsiderate way to describe it, because so much of the outcome is out of our control and those who lose the battle are not weak and did not choose to go. My dad was originally given 5 months to live and he lived 15. He was determined to hold on. As my sister and I process this grief and nurture the emptiness we are feeling, I can't help but feel like an entire village of people helped me through and this resource is part of that. I don't know what life holds for me, but I am constantly reminded how kind and beautiful human beings can be. Thank you all for everything. My life has fundamentally changed from the passing of my dad, but I will look at him with fond memories and celebrate him by being kind, determined and empathetic to every soul I meet. So much love to you all. Holding all of you in the light. Lily
  22. Any thoughts/Experience?? High doses of vitamin C to improve cancer treatment passes human safety trial https://www.sciencedaily.com/releases/2017/03/170330142341.htm
  23. I convinced my wife to hike up Diamond Head Volcano in Oahu yesterday. First I didn’t see any diamonds. Second it has been dormant for 150,000 years. Can you call a lake a lake if it hasn’t had any water in it for 150,000 years? What about a volcano that doesn’t have any lava? Anyway that’s not the point. The point is 358 days after I had my upper right lobe removed via lobectomy I hiked to the top of a volcano. It’s not a big volcano, but it’s a volcano. 760’ at the highest peak. We were told it would be about a half hour to get to the top. My brain said we’d be there in 20 minutes. 45 minutes later we made it to the top. About 15 minutes in I got scared. The feeling that maybe I shouldn’t be doing this, maybe I couldn’t, set in. My brain isn’t use to telling my body to pace itself. It just runs off up a volcano without a thought in the world. But then my body tells my brain that I need to slow down and pace myself. There were some spots that added to my concern. I got short of breath and had to stop a few times. About two thirds of the way up there is a 225’ long walking tunnel. The air felt kind of tight in there. Maybe it was just Claustrophobia. As soon as I got out of the tunnel I was confronted with 99 steps, felt more like a ladder. After that a few flights of spiral stairs in an old military concrete building. Then the final 76 steps to the top. Most people say the view at the top is worth the effort. For me the view was secondary to the accomplishment I felt getting up there at all. If I can do it so can you. Mahalo!
  24. This post is just to demonstrate use of tags. Peace Tom
  25. Good morning - I just posted to the new member site My name is jenn. My mom has newly diagnosed iiia lung ca. No symptoms. Otherwise healthyexcept some hypertension. She starts cisplatin / gemzar today. 1st cycle / 1st treatment with hopes of shrinking for surgery. About me: 35 y/o daughter ... currently 6 months pregnant, working full time, raising a toddler with my hubby an hour away from her 😥 I read forum about joining her for her long treatments (no one wants prego at the infusion center), my OB really doesn't want me doing 1hr each way. I'm just so torn. How can I help her and take care of myself? She has my dad and friends but I want to help but feel so limited - like I'm choosing my baby over her. If she does have surgery (praying!) ... it will he 2hours away so I'm not sure I can go with being so close to delivery. I dont want to stress her out but she us so stuck in her head right now sometines i think her (and my dad) forge rim pregnant. I understand they hhcaveca big problem on tgeit hands but u have a big worry too! Any suggestions to help copeor get to assist her/ him
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