CLM Posted June 28, 2020 Share Posted June 28, 2020 Hi! I'm so happy to get introduced to this resource. I've had an xray and ct scan and all I know is that I have "malignant neoplasm of lung (both lungs, lymph nodes, and thoracic spine)." I'm feeling like there is no hope. I'm supposed to meet with an oncologist tomorrow to find out more. Link to comment Share on other sites More sharing options...
Lin wilki Posted June 28, 2020 Share Posted June 28, 2020 Welcome! Best place to be for resources and HOPE. Plenty of long time survivors on this site that can answer questions and listen to you I am a one year survivor - stage 4 adenocarcinoma. Still here still trying different treatments. There’s always hope I do remember the extreme anxiety I had when I was going through all the tests. Cancer? Maybe an infection? No one wants this diagnosis but once you meet your doctor and make your plan - you calm down and start your journey Good luck and keep us updated Link to comment Share on other sites More sharing options...
Tom Galli Posted June 28, 2020 Share Posted June 28, 2020 CLM, Let me add my welcome to Lin's. I second her advice of meeting with your doctor, making your plan and especially trying to remain calm. Let me add this that may yield some insight into coping with diagnostics and treatment. Questions? Here is a very good information source that is easily read about our disease. The tough part for most of us is learning a brand new vocabulary and Lung Cancer 101 helps. Stay the course. Tom Link to comment Share on other sites More sharing options...
CLM Posted June 28, 2020 Author Share Posted June 28, 2020 I will, it’s amazing how much your response helps. I’m just so scared that I won’t survive for long, but your story gives me hope. Thank you so much. Link to comment Share on other sites More sharing options...
CLM Posted June 28, 2020 Author Share Posted June 28, 2020 Tom, you may be my new best friend! I loved all of that advice! Thank you! Link to comment Share on other sites More sharing options...
BridgetO Posted June 29, 2020 Share Posted June 29, 2020 Hi CLM and welcome here! Tom G is a great example of a long-term survivor who gives a lot of people hope, as well as valuable information. If you look around the site you'll find other long term survivors, too. Please keep us posted and let us know what questions you may have and how we can support you. Bridget O Link to comment Share on other sites More sharing options...
CLM Posted June 29, 2020 Author Share Posted June 29, 2020 Thank you! I’m trying to get into the dr today to learn the next steps. Ugh! Woke up scared, trying to be positive. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted June 29, 2020 Share Posted June 29, 2020 Welcome! There most definitely hope! I just wanted to share Lung Cancer 101 with you. https://lungevity.org/for-patients-caregivers/lung-cancer-101/recently-diagnosed There is a ton of great information, terminology and what to expect next there. Thinking of you! Link to comment Share on other sites More sharing options...
CLM Posted June 29, 2020 Author Share Posted June 29, 2020 I have an appointment tomorrow with an oncologists to learn about next tests. Link to comment Share on other sites More sharing options...
LouT Posted June 29, 2020 Share Posted June 29, 2020 CLM, Welcome to our forum. I see you've met some of my Lungevity Family and they are super support. As you go through this journey feel free to come here and ask any questions you may have. Not every person will have every answer, but, as a group, there is limitless experience and knowledge here that surely helped me get through my own LC (lung cancer) journey. Lou Link to comment Share on other sites More sharing options...
CLM Posted June 29, 2020 Author Share Posted June 29, 2020 Thank you all for making me feel so welcome! Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 1, 2020 Share Posted July 1, 2020 Just wanted to drop in and also say welcome. In the beginning everyone is absolutely terrified. It’s important to stay away from the internet which is fraught with outdated information. Anything six months old is already history. Significant advances in treatment are being made with the FDA approving seven last month. It’s an emotional rollercoaster right now, know that we’re here to help you through this. This is a wonderfully diverse community experienced in many treatment plans. You’re not alone, ask as many questions as you want and we’ll work to get you the needed support. Michelle Link to comment Share on other sites More sharing options...
Lisa Haines Posted July 2, 2020 Share Posted July 2, 2020 Dear CLM Welcome to a group no one wants to join, but one that can provide you with a wealth of support and information! I am now in my 5th year "living" with Stage IV NSCLC and I'm an active member of LUNGevity, but I primary post in the LUNGevity FB Groups and have only recently started to post of the forums to meet new members and also try to support you. I still remember how totally overwhelmed I was when I first learned I had a brain tumor back on 3/27/15, after a very sudden onset of what I thought was Vertigo. I was just four week out of hip replacement surgery and all my pre-ops including a chest xray done before that surgery had all been fine? Once they found my brain tumor, I had more sudden neuro changes and was immediatley admitted to a Neuro Unit. A week later and many more tests, I learned that I had Stage IV LC that had spread to my brain. I also had a Pulmonary Embolism, despite have no chest symptoms, no breathing problems, no cough, not pain, nothing --- just two days of some dizziness and a feeling that something in my "head" was off? Thank goodness my PCP sent me in for the urgent Head CT Scan and that's how it all begin. Finding out I had Stage IV cancer while still recovering from the hip surgery was such a shock? How could all my labs nd chest xray have been fine? That's always been a question that no one can answer? I have given up now on trying to figure it all out and prefer now to focus on getting through this. I am very happy to now be OFF all treatment, "Stable" and doing well. My next scans will be coming up in August, and I have now been lfor almost 4 full years. I've had Stereotactic Radiation for the brain tumor which is fully resolved and has never returned and also then started on Chemo for the Lung tumor (nodes), followed by radiation and then Immunotherpay (Opdivo) which I feel was my life saver. Please let us know how you are doing and how your appointment went with the Oncologist. I wish you the very best - take care Lisa Link to comment Share on other sites More sharing options...
CLM Posted July 3, 2020 Author Share Posted July 3, 2020 Hi All, I had my lung biopsy Wednesday and I’ve been feeling pretty low and wiped out since. My GP called and said they had to give me a lot of anesthesia because I kept waking up and trying to talk to them. At one point I gave them a thumbs up, lol. I meet with the pulmonologist on Monday to get the results and then the oconologists on Tuesday. I was feeling very positive and I’m trying very hard to get back to that place. We haven’t told my kids yet (16 and 13) because we want to tell them once we have a plan. I told my husband this morning that I think I need to go on this group today. You all are so helpful. ❤️ Link to comment Share on other sites More sharing options...
Lin wilki Posted July 3, 2020 Share Posted July 3, 2020 Chin up! Try to enjoy your holiday. Here's how I got through a lot of the waiting ---DENIAL! It's not cancer until they say so! Prayers to yuou Link to comment Share on other sites More sharing options...
CLM Posted July 3, 2020 Author Share Posted July 3, 2020 Ha! Thank you Lin, you’re right! Link to comment Share on other sites More sharing options...
LouT Posted July 3, 2020 Share Posted July 3, 2020 My friends here are right..."It's not cancer until they say it is", So, just for today; stay focused on your family, enjoy the holiday, feel the warm weather and let yourself feel good about what you do have. You'll cross the future bridges in the future. Lou Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 3, 2020 Share Posted July 3, 2020 You’ve already got what it takes to take on whatever happens in the days ahead. Even an extra dose of anesthesia isn’t going to put you down. So thumbs up to an enjoyable weekend! Link to comment Share on other sites More sharing options...
CLM Posted July 3, 2020 Author Share Posted July 3, 2020 Thank you all so much! I’m sending you all virtual hugs! I’m so grateful for all of you and this group! Link to comment Share on other sites More sharing options...
Claudia Posted July 3, 2020 Share Posted July 3, 2020 Hi CLM, I just wanted to let you know that there is always hope. I was diagnosed a year and a half ago with stage 4 Squamous Cell NSCLC and I was petrified just like you. I know that I felt much better once I had a meeting with my oncologist and having a plan in place. It felt good to be fighting back. I now go for Keytruda every three weeks and did so yesterday. Try to calm down and remember there are new treatments being discovered every day. It's not like the old days. Keep off the internet. Most of the information is old and outdated. There is always hope and you found it right here. Have a beautiful weekend. Peace, light and great scans to all, Claudia Link to comment Share on other sites More sharing options...
Lisa Haines Posted July 4, 2020 Share Posted July 4, 2020 CLM Wishing you the very best - always feel free to stop in any time you feel the need to vent, chat or even scream -- we all totally understand how you are feeling and what's it like to go through this process. If you are a FB User LUNGevity also has several FB Groups for LC patients -- This link https://www.facebook.com/groups/lcaware goes to the main group and you are welcome to join if you'd like too, it's the main group and there are also many wonderful members who post on FB as well as here on the Forum. Hope you can get outside and enjoy the Holiday Weekend ! My Hubby and I actually were able to go out for a wonderful "seafood" dinner (outdoor dining) last night at one of our favorite restaurants was recently allowed to open for Outdoor (socially distanced dining). Something we've not been able to do for many months (because of Covid). Luckily, here in MA with the strict guidelines we've had in place our numbers are now at the lowest they've been and the case counts continue to drop. I live in a small coastal town and we have not had ANY new cases in the last 4 weeks, which is wonderful. We are still not "fully" open and masks are mandatory here and have been since March. We love the fresh seafood and it was really enjoyable to get out and have a nice dinner. I know for many that's still not possible, so my heart goes out to them, but for those who can get "out" and enjoy some fresh air and socially distance, it makes you feel somewhat "normal" again. Things certainly are a lot different this 4th, but hopefully if we all continue to take lots of precautions we can look forward to getting back to normal by next year. You are not far form me in CT, so hopefully you're also enjoying a gorgeous sunny day. Happy 4th to all! Lisa Link to comment Share on other sites More sharing options...
CLM Posted July 6, 2020 Author Share Posted July 6, 2020 On 6/28/2020 at 4:21 PM, CLM said: Hi! I'm getting nervous for my biopsy results that I get tomorrow. I know I have malignant neoplasm of lung (both lungs, lymph nodes, and thoracic spine). But I don’t know how good/bad it is. I’m grateful for everyone’s survival stories. Reminding myself that every second my body is fighting! Link to comment Share on other sites More sharing options...
Lin wilki Posted July 6, 2020 Share Posted July 6, 2020 🤞 Good luck Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 6, 2020 Share Posted July 6, 2020 One step closer to getting control of this situation. Try and get some rest tonight. You will start to feel better as the trial plan takes hold. Hold onto your confidence. Link to comment Share on other sites More sharing options...
GaryG Posted July 6, 2020 Share Posted July 6, 2020 CLM : I am also newly diagnosed but joining this site was extremely helpful. There is no shortage of support and good advise but reading https://lungevity.org/for-patients-caregivers/lung-cancer-101/recently-diagnosed helped me understand how to interact with my doctor and ask the right questions. I wish you the best and be strong. Gary. Link to comment Share on other sites More sharing options...
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