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Hello and Welcome. Unfortunately your post is all too familiar, no one wants to join this club. Everyone is reeling when the words lung cancer are spoken. You’ve done some homework which is good. The “survival” statistics from Dr Google are way off. These days lung cancer isn’t necessarily a terminal diagnosis. Smoking is a risk factor for lung cancer not a cause. Anyone with lungs can get lung cancer. Most often it is diagnosed in late stages as there are no symptoms. It’s hard to wade through all the emotion while quickly coming up to speed with what seems to be

Thanks so much for your well wishes! I did get the results and there are no mets to the brain! I can't even describe the relief I feel today! The Tabrecta should be delivered today. Thanks again everyone. Deb

Just a quick update - my mom received her prescription yesterday, no cost to her through December. Thankfully the drug company has a program like this. The company was really easy to work with and very responsive. Unfortunately though, my mom is already out of remission from leukemia, just 3 months after treatment. Currently, she has 3 treatment plans, the first being the drug she just received. So it's a good thing she got her pills! If I can give 1 piece of advice for anyone dealing with insurance denials for prescriptions, start with looking into the drug company. The drug's we

Good news, it seems to be going away but very slowly. Yesterday and this morning were very awful to go through but it’s not as bad as it was. I was able to eat a sandwich which is different to the soup I’ve been chowing down lol. Aiming for a pizza sometime this week so hopefully it heals fast! As for fatigue, none had. I’m moving around good, my leg feels a tad bit tired but I was able to go out for a little bit today and it felt good. The road to recovery is definitely began. The more I got through this, the more I realize everyday that my youth is definitely on my side. I’ve seen

Hi there, and welcome from me, too. Michelle has given you great advice. Nobody--not even his doctor or the best oncologist in the world--can tell you how much time he has. I do know there are a few folks here who are 15-20 years out from a Stage IV diagnosis. And the new discoveries and treatments are coming out every day. I started out with a tiny tumor, easily removed by surgery. But three years later, it came back, in the other lung, and spread to one of my bones (along with several lymph nodes), making me Stage IV. I did well on chemo/immunotherapy for a few months but then the canc

Actually went out and hit golf balls today. I hit a bucket and actually hit good shots at the end. The fact that I can physically hit the ball again is...nothing short of fantastic! I really was concerned I wouldn't be able to. Small, but important, step. Peace Tom

Hi, Katie, and welcome! I had to look up that kind of tumor--apparently it's very rare and represents only about 1 percent of lung cancers. I'm not aware of anyone on this forum that has dealt with it. Apparently it is pretty resistant to most conventional treatments. In your shoes, I'd do what you're doing--connecting with a top cancer center for treatment options and learning about clinical trials. I'm sorry about his diagnosis--lung cancer is always scary to deal with, but with a young family it's got to be even more difficult. I wish I could be of more help, but I'm glad yo

We’re all clear and I’m being discharged! The ct scan cleared up their concerns of my C3 being imbalanced but it seems to be all normal. Nothing yet to see if it’s been officially healing but I’ll find out eventually. Things do seem to be going somewhat in my favor I guess.

You're both just special snowflakes, lol.

Thank you Judy for the FB info. I have requested to join. And I will most definitely keep you guys informed. This is the most helpful forum I have found yet.

Update: Had my Mediastinoscopy on Friday April 2, 2021. Anesthesia wasn't a friend post-op. Just the Nausea/ Vomiting/ feeling super crappy. Definitely longer an 1 inch incision (glued) and still very swollen/ bruised. I literally feel like I was throat punched. However, I can still eat. I do run short of lung volume at the end of sentences. Still talking in a whisper but gets a tiny bit louder everyday. Biopsy results came back as expected with only one node (S7) being positive. So, treatment plan remains the same. Chemo then surgery. Staying the course, Tom ! and

Thank you all - I contacted the drug manufacturer yesterday. They have 2 programs to help pay for the drug, 1 she doesn't qualify for, the other is a process but at least I got it started. We have an appointment with her oncologist on Tuesday and I warned the oncologist that I expect for her to make time during this appointment to discuss further options. It's hard with my mom's chemo brain to get exactly what was said by her docs. But I plan to get to the bottom of it Tuesday!! I am keeping my fingers crossed that the drug company offers her financial assistance and I don't need to

Hi Steff, The exact same situation occurred with one of my ALK Positive peers! Since Medicare is a federal program, managing the appeals process was almost pointless. My friend had to file complaints with both her Senators, Congressional Rep, and finally the State Attorney General. In the end it was the AG office that contacted someone in Washington DC that got the approval for the dosage increase. A few of the other ALKs with private insurance had the same problem when their ALK inhibitor (targeted therapy) was prescribed at above the recommended dose. It was a major hassle that

It is NOT true that targeted therapy isn't approved for Stage IIIB, because I take it. It is very expensive, so your oncologist may have to do battle with your insurance company. Surgery also wasn't an option for me. I did not have "clean" scans after 6 weeks of chemo/radiation but rather slow improvements and "continuing positive treatment response". I still am not NED after 14 months but have been stable and improving. It has been a long road for me but all the treatments seem to have been effective. Many members here don't have targetable mutations and are living with lung canc

You have found exactly the right group of people to help you through this. When my husband was diagnosed with Stage IV lung cancer non small cell adenocarcinoma back in September, I immersed myself in my own "research" which also turned out to be grim, overwhelming, and just upsetting. I have no advice to offer that hasn't already been said here, other than to tell you that this organization and this forum will be a wealth of resources for both of you. Sign up for the caregiver forum and join any of the virtual get togethers that you can. My husband found great success with immunotherapy and d

Hello K- I am very sorry you find yourself here as well. I grew up across the river in Jersey. Like you I was 51 at the time of my diagnosis, a competitive rower. For months a increasingly worsening cough was misdiagnosed because no one suspected lung cancer. I was Stage IV with biomarker testing discovering the ALK mutation. About 90% of mutations are diagnosed at Stage IV. Unfortunately there is little consensus on how to treat Stage IIIb, it’s rare. The team is correct in holding immunotherapy until the biomarker panel is complete. If there is a mutation, t

That's pretty much what I wasn't sure of--the extent to which targeted therapy or immunotherapy could potentially be curative. There's no guarantee of a "cure" even with a so-called curative course of treatment and there are people here 15-20 years out from an advanced lung cancer diagnosis with no evidence of disease (one has even been pronounced "cured" 17 years later!). So yeah, pretty confusing and at this juncture, the best course of treatment is, to some extent, a guess. Have you discussed surgery at all? Some Stage III cancers are operable. Even though I'm Stage IV, I h

K, I'm glad you're going for second opinion before starting the treatment. Here's my 2 cents - IF you have a mutation that has available targeted therapies out there, there is no reason that you should start with chemo/rad first. Your first line of treatment should be the targeted therapy. In addition, depending on your insurance, they may deny to pay for the targeted therapy (mine was about $20k/month) once you start with chemo first. Keep us posted. You can do this! MB

I lurk, rather than post, but in December when I had surgery for atypical carcinoid cancer they removed my right lung, not just part of it as planned, and several lymph nodes. Cancer had spread more than expected, but no problems with lymphedema.

@TJMSince then mine has completely gone away. I have a slight scratchy feeling but that’s it, I’m able to eat mostly anything and drink as well. It did get to a high point where it was really bad and that’s when I called my nurse and got a medicine called Carafate. After that it started healing fast. It was an awful thing to go through but I endured it.

Sally, My Lord! You are really going through a lot and it seems these things hit you from different sides all at once. Let's see what they do find with the additional scans. You don't need to hide your fears; at least not with this group. We've felt them, feel them and support each other through them. With so much going on you must be feeling like you are "waiting for the other shoe to fall", but let's hope that the therapies now will reduce the effects o your GERD and that the lung pain is the result of the many other things going on. Let's keep away from "conclusions" until we kno

@Staying Hopeful, I'm so glad my story has found you, and I can give you all the info you need. I agree that employers had us come back downtown way too soon while it was a burning war zone. The first responders were the first to get sick and pay the price, and now workers, residents, students and visitors are getting sick. The website for the 9/11 Victims Compensation Fund is www.vcf.gov. It contains links to the application and required paperwork. I applied right after my diagnosis in October 2019. Since the process can be daunting, I decided to engage the dedicated 9/11 NYC law firm B

Glad you're feeling a bit better. Don't forget to take a daily dose of Miralax if you're taking anti-nausea drugs regularly. Trust me, I learned the hard way that taking anti-nausea drugs before I start to feel queasy is a recipe for the most horrible, painful constipation imaginable. Taking the Miralax helped, as did cutting back on the anti-nausea meds until needed.

You do know why us Scotsmen decided to call it golf dont you? All the other four letter words were taken..😎

Thanks for sharing this, Ro. I've just had my first experience with post-chemo/immunotherapy progression (so far mild) and am looking into clinical trials. There are at least three worth consideration at this point, I think--each with a slightly different approach or twist. Two are where I'm currently being treated and the third is where I was first diagnosed (and had my lobectomy and subsequent second diagnosis of Stage IV). I'm waiting for someone there to get back to me to discuss. I've sort of skimmed over people's stories about clinical trials, focusing on what was most relevant for

Legislation is being reintroduced to expand healthcare eligibility and create a framework for establishing a presumptive service connection for military toxic exposures. I have not read the legislation, but it sounds a lot like the 9/11 legislation whereby your disease is presumed to have been caused by exposure to those toxins. It wouldn't hurt to write to the co-sponsors with your personal story and copy your own Congresspeople. Personal stories are very effective and resonate with legislators and their staff. I hope Congress will take up the TEAM Act with no further delay. https

For the first couple of months, many of us think, is it ever going to get better? Sometimes just getting through the day seems like a ginormous effort both physically and mentally. There will be a light at the end of this tunnel. You will get there. Believe in yourself and your team. Try to remember you are not complaining but communicating with your team. The more they understand what you’re dealing with (no matter how insignificant it may seem) the better they can address your symptoms. Rest and fluids will go a long way. So far you’re doing great...

Welcome, Justin. I am also EGFR+, diagnosed at Stage IIIB in October 2019, and on Tagrisso for 13 months as a second-line treatment. First line was carboplatin/taxol and 30x radiation. You might be interested in the private Facebook groups below. I believe some people are on the same regimen as you, but only after progression. I know that others will be interested in your experience. LUNGevity Tagrisso (osimertinib) Patients & Caregivers Group, LUNGevity EGFR Group, LUNGevity Targeted Therapies Group, and also LUNGevity EGFR Resisters Lung Cancer Patient Group (

Oh, great! There are LOTS of us on what we call the triplet--carbo, Alimta (pemetrexed), and Keytruda. After the first four cycles they eliminated the carbo for me and I'm now just on the other two for maintenance. The high PD-L1 should be promising for you for immunotherapy down the line. I always say the secret to surviving lung cancer is to stay alive long enough for the next new discovery! I forgot to thank you for your service--my dad was a 20+ year AF vet. I'm sorry you were exposed to all those chemicals.

Hi Everyone ! Came back from oncologists appointment; clinical trials for ERBB2 mutations are still in phase one so she doesn’t recommend it. Her treatment plan is alimta with carbo plus Keytruda. Shella, you are right, when PDL1 is less than 1%, it’s indicated to be used along with other chemo agents. My next hurdle is to get Keytruda approved from my insurance. Since I have a few insurances, it takes a while to navigate through them. Now I’m being prepped up with B12 and folate to prevent toxicity from alimta. My first chemo administration will be somewhere next week. Overall, my oncolo

Hi Mike, As a former Durvalumab user, I wanted to ask if you had your biomarker testing done before starting on the Immunotherapy? I too had the chemo and radiation and was then started on Durvalumab. After receiving 18 infusions, a CT/PET indicated a possible progression, so my ONC had a lung needle biopsy sample sent off for Biomarker testing. This testing confirmed that I was PDL1 negative, and ALK positive, so the Durvalumab had little or no chance of working. About the only good thing from the Durvalumab treatments was that I got to meet many great people here in the Lungevity Forums

Hi, Sheila! First of all, I understand what you meant about it "selfishly" making you feel better to talk to others who are in the same boat. Not selfish at all! The best support comes from people who can honestly tell you that they KNOW how you feel, instead of someone just sitting there nodding and "understanding" how you feel. While the latter means well, they haven't walked the walk. But any support is always appreciated. About the chemo. Since you are on a triplet, the appointments could take 3-4 hours. They'll do labs on you first, then there's usually a little bit of a wait

Ale, that esophagitis is enough to get anyone down. It's awful but it does get better. You'll be surprised that you feel good on chemo days because of all the drugs (and possibly hydration) they give you at each infusion. I used to stop at Wendy's on the way home from chemo as a treat until my esophagitis got too bad. Make sure you have anti-nausea meds (from the oncologist) and also OTC meds for constipation. When you get fatigued, rest. Any changes in taste are temporary. Everything will settle and you'll eventually know what to expect after each infusion. You've got this.

Great news! This is one time it's good to know there's nothing in your head!😀 (at least nothing that doesn't belong there.)

Yup, I'm another one without any targetable mutations. Chemo/immunotherapy worked great for me initially, but as so often happens my cancer eventually became resistant to the drugs and started to progress. I'm starting a clinical trial this week--my doctor says there are literally hundreds for which I might be eligible. No guarantee this treatment will be successful, but if not, there are other trials/treatments. One other thing re medication costs. The drug companies generally provide financial assistance for patients who otherwise couldn't afford the drugs. But first you gotta get the

Hello, I’m pretty late I see but I figured I’d chime in as well and say welcome. I’m 22 years old and I was diagnosed about 2 months ago with similar situation to yours except mine gave me issues with my back and neck. I have a mutation called Her-2 which is a rare mutation found in Lung cancer but common in breast. There’s no known trials for it as of right now unfortunately. As someone as young as I am I just thought it was me pulling a muscle or straining something, but unfortunately that’s wasn’t the case. I did 10 days of radiation and now I just started my first infusion of chemo last Fr

Thanks. Glad you're going for the 2nd opinion. I am enrolled in the 9/11 Victims Compensation Fund and will have my first interview with the WTC Health Program in a couple of weeks. Covid has significantly delayed care through the WTCHP. I strongly recommend enrolling, because your lung cancer, as well as 67 other diseases, is presumed to have been caused by 9/11 exposure (regardless of smoking history). If you visit www.post911attorneys.com, Barasch & McGarry has tons of information on how to enroll and file a claim. That firm was recommended to me by one of the attorneys I used to w

You did that for me? I’d love to give you a big hug right now. Thank you so VERY much for taking time out of your appointment to ask a question for a total stranger. You are a very nice person with a giving heart. im very relieved with his answer and ive pretty much decided to go ahead with the procedure. thank you again Lexi. I hope you are doing well and that your doctor visit went well.....

No, per the study description, patients are "[a]ssigned by the physician to receive either docetaxel or immune checkpoint inhibitor per standard of care regimens." Exclusion criteria include contraindications for receiving docetaxel and contraindications for immune checkpoint therapy. So apparently it's not a specific immunotherapy, but it does have to be either docetaxel or an immunotherapy drug. Also, based on the description, patients in the study are randomized between the drug alone or the drug plus the device: Eligible patients will be randomly assigned to one of two groups:

Sally, Sorry, I am a bit late to the party. First a couple of questions. Did you have SBRT or another form of precision radiation? I reviewed your post history but didn't see that you had it. If you had precision radiation, how many treatments did you have and what was each treatment's duration? I understand the GERD complication but not how it could connect with lung pain or precision radiation. Also if you had precision radiation, that treatment it is unlikely to cause radiation pneumonitis. But, unlikely is not impossible. I've also had aspirational pneumonia after my se

Hi, Fred, Welcome from me, too. I was a longtime smoker, and no matter what, a lung cancer diagnosis is always shocking and scary. You will adjust to a new normal. Do you have your pathology results back? What happens from here will depend in large part on those results--what specific type of lung cancer, stage, whether any lymph nodes are affected (and if so, where and how many). Do you know whether a sample of your tumor was sent out for genetic testing? It's a good idea to push for that (though insurance companies sometimes push back, especially for early-stage cancers), since hav

Let me welcome you to the forums... you will find many, many here that know just exactly how you feel. To those unaffected by cancer it doesn't seem that they get it much at all, but then think how we used to feel before we got our diagnosis; it just didn't cross our mind at all. And whether any of us smoked at all just doesnt seem to have anything much to do with it anymore. If you have lungs, you can get lung cancer...period. So lets face it, we were just too busy thinking of other things like how we were going to enjoy our retirement, how much money we had to enjoy that retirement, and how

I’m telling this story so that others who find themselves in a similar situation, ask this question, “What about the “Roscopal effect?” When diagnosed with NSCLC-mucinous adenocarcinoma, in the summer of 2017, I believed that my medical team had all the answers when it came to my treatment. However, after a lower left lobe lobectomy in September 2017 (with an 8.3 cm mass), I started to ask more questions and gather more information. My thoracic surgeon and I decided together that the next course of action should be removal of my upper right lobe which was done in October, 2017 via

Hi Jesse, Thank you for your service! Glad that you're doing well with your treatment. I lived about 50 yeards from the burn pit in Taji. At night the wind would shift and our living area would be enveloped in a fog of what smelled like burning plastic. I had no complaints with my local VA until this diagnosis. It took them 7 weeks just to schedule a CT scan to find the nodule in my lung and the oncologist there did not follow all the necessary steps to confirm my stage diagnosis. I'm fortunate to have private insurance so I elected to get treated at Dana Farber while at the same tim

Sure--tell her what the other doctor is recommending and ask for her comments. One thing to understand is that even though oncology and medicine in general are scientific, there is also an "art" to them. The best doctors make their recommendations based on the science, as well as their own experience and reasoning. Probably either course of action MIGHT be appropriate for some patients. Ultimately we have to decide what we are more comfortable/confident about. There are never any guarantees that one treatment path will be better than another. So yes, ask lots of questions and try to

Just read your post and my support and care goes out to you. If I were in your shoes I'd be doing exactly as you. You just have to stay committed and in the fight...there's not a lot of choices. Whatever though you need to know that we are out here thinking of you and will help any way that we can. Sure, there's the tethnical side of these afflictions. But there is also the human side. Reach out for anything and we'll do our best for you...

Hey all, I feel as I need to vent a lil bit. The closer I get to chemo day, the more scared I get. I don’t know what to feel or believe in. I’m so worried that it isn’t gonna work, I know I can’t have that mindset but it’s always crossing my mind. I know I’m young and it’s definitely helped out with the other treatments but I feel so out of it.. Other news, the side effects from radiation are slowly going away but it sure is hell. I can barely speak without some sort of mucus buildup and I’m always spitting stuff out it’s annoying. It still hurts to eat but definitely not like befo

I just read this in the online edition of Stars and Stripes, the US Armed Forces Newspaper, about a COVID vaccination booster (works with all currently used vaccines) just started human testing at Walter Reed Army Hospital. Stay the course. Tom

Yes, be sure to call every day! Update on mine...it turns out the person working on my case went on vacation. Novartis approved the trial sample on March 22. The pharmacist at my medical center was shocked that they would drop the ball like that. I'm told it will be delivered on Friday. Fingers crossed. Lexi, thanks for the link! Deb

Hi there, and welcome. There are several threads about Durvalumab here: https://forums.lungevity.org/forum/47-immunotherapy/ For us to be of maximum help, it would be good if you could share the exact type of cancer you have (e.g., adenocarcinoma), what stage, and any other treatments you've had (e.g., surgery, chemo). You should ALWAYS let your oncologist and/or nurse practitioner know about any side effects you're experiencing. Some can be dangerous and might require a change in treatment.