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Found 9 results

  1. HI Everyone, My name is Deirdre. I was diagnosed with Non Small Cell, Stage 4, EGFR in May of 2019. I am doing well on Tagrisso. I have mets to the spine and breast. I am "you". I am 50 and was diagnosed when I was 49. I have a 10 and 12 year old, boy and girl respectively. I feel incredibly lucky to work at Johns Hopkins and be from Boston. I have great care. I had a biomarker test right away and was put on Tagrisso immediately. It is working for me. I do have a question about tagrisso side effects. Lately I am experiencing some real fatigue--having a hard time getting up in the morning, sometimes taking naps during the work day, etc. I am also experiencing incredibly itchy skin. Deirdre
  2. Hi everyone! I’m Melissa and I live in Baltimore. I was diagnosed with Stage IV Adenocarcinoma in July of this year after having a nagging cough that would not go away. I have been on Tagrisso and as of October my scans showed the tumors have shrunken by 50%. I am so thankful to be living in an age where Tagrisso is even an option! I have an amazing support system of husband, family, friends and colleagues who have gone above and beyond with help and this has gotten me through 2020. I had lost my job due to COVID about 5 days before my diagnosis so it was a real double punch for life changes. I was so uncertain of what to do next and what I should be doing with myself. My husband and I were ready to find our dream home and I really loved my job. All at once, it felt like our future was ripped away from us. I did make the decision to keep working and was SO fortunate to find employment at a wonderful organization. This has also allowed us to begin the search for a home again. I’m terrified of making such a huge commitment since I don’t know what my next scan holds but I try to read the stories of other survivors and believe that I have many years left. I decided to reach out to the support group because up to now, i haven’t talked to anyone else with my diagnosis and I want to hear stories from people who share my experience. I also feel the need to give my. Are takers a break from my every worry that I have about my health because I know they worry so much too. Thanks for reading my story!!
  3. 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.
  4. Hi everyone: I'm Josephine. My mom has stage IV lung cancer, adenocarcinoma, with MPE. Not confirmed yet (pending final cytology report and genetic testing). But with the MPE, and they found a stain matches adenocarcinoma in the initial cytology report, we know what we're dealing with. I was devastated and shocked (my mom never smoked, no cancer in her family). I cried for days, then I thought I had to be strong and be my mom's advocate. Then I found this forum, I'm glad I found you. Tomorrow is our first consultation with her oncologist. This is the appointment where we'll learn what's in the final cytology report and the results of her genetic testing. We live in Los Angeles, our city and our state is dealing with wild fires. The doctor has a family emergency, our appointment was changed from in-person to a video appointment. My mom and I are disappointed, we were hoping to meet with the doctor, assess our chemistry etc. But we understand the situation. I assume tomorrow she'll tell us the treatment plan etc. The appointment is an hour long. If you guys have any advice (what to ask, etc.) please let me know. My mom is with Kaiser. She's been using Kaiser for a good 20+ years. Kaiser has been convenient and effective (my dad had a bypass surgery and a hip replacement surgery there, both were successful), but when I ask around about Kaiser treating cancer, I get somewhat negative feedback. Reading their online resources, it seems they don't offer immunotherapy. Are any of you familiar with Kaiser and can give me advice there? Advice on anything. Open enrollment is coming up. Shall I try to switch and get my mom treated at Cedar Sinai or City of Hope? Is switching to a new medical provider isn't viable as my mom now has "preexisting" conditions. So many questions to ask. Appreciate any information you guys can offer. I'll be a regular here. Talk to you soon. Josephine
  5. Hi there! I'm Heather and I was diagnosed with Stage IV ALK+ lung cancer at 34 (4 whole years ago!) and after disease progression in 2019, I came away from that experience with a fire to advocate for lung cancer research, to change the face of what it looks like to be a lung cancer patient and to generate discussion about a healthy way to bridging the gap between Western medicine and body, mind + soul wellness. Since then, I started a blog Living Lives with Lung Cancer to foster a space for these conversations with my fellow patients. It's been totally life changing for me to take the things I learned (and I was slow on the pickup) and to share them with anyone and everyone who will sit still. I truly believe that as a cancer patient, you should be invited into your own healing and health journey and that you should continue to grow and evolve and live your life to the fullest as your true authentic self. Body, mind and soul! Looking forward to learning and talking to you all!
  6. Hello all. This is my first post on the forum that nobody wants to be a part of. I’m just hoping for some insight. My father who is the Center of my universe was diagnosed with adenocarcinoma stage 4 with Mets to lymph node and chest wall extending into 4th and 5th rib. He just completed radiation to the chest wall on New Years Eve. Radiation was a breeze but with the appropriate heavy duty pain meds. On Friday he was admitted with the most severe pain. Excruciating to watch. CT was done which showed disease progression 1/2 cm. That coupled with a Staph infection. Am I getting too worried? Is it too soon for the radiation to have started working? He starts immunotherapy next week. Thoughts?? Thank you
  7. Hi. I just joined this site for help and support. My mother (age 70) was recently diagnosed with Stage IV NSCLC adenocarcinoma with mets to liver and bones. She is in poor health and has decided against chemo. She started the Opdivo and Yervoy combo today and we are all very anxious on what to expect and how she will respond. I would love to hear about any members' experiences with this immunotherapy combo! Thank you, and thank you for this forum.
  8. Hi, I'm Robert and have just been diagnosed with S IV NSC Carcinoma. Waiting for the genetics to come back but found out I don't have over 50 PD-1 so at this point, no Keytruda. Have to wait for the rest to come back to decide on the course of treatment. Being treated at NYU in New York and so far happy with the doc. When it comes time for a second opinion, I'll reach out to this community for suggestions. Thank you
  9. Hi, Just a quick introduction of a now 64 year old man with stage 4 lung non small cell lung cancer. I have been arguing with this disease for 4 years now and as I listed the various forms of treatments that I have undergone. I won't bore anyone with the details but would be more then happy to answer anyone's questions about any of the treatments that I have had. There seem to be numerous questions about immunology drugs such as Optivo. If I can help just shout at me (or a soft whisper would do fine).
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