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  1. 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
    7 points
  2. 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
    5 points
  3. Judy M2

    Just diagnosed

    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
    4 points
  4. 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
    4 points
  5. Rower Michelle

    Just diagnosed

    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
    4 points
  6. LexieCat

    Just diagnosed

    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
    4 points
  7. MBinOregon

    Just diagnosed

    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
    4 points
  8. @Tom Galli and @Jesse L. Thanks for both of your replies. After researching and a dr appt., he said the allergic reaction to Carbo is ‘uncommon’. About 30% of people may react after 6-8 treatments. I was on my 6th treatment. He also said he could switch to Cisplatin, but it wouldn’t be as effective as the Carboplatin, in my case. So we’re going with desensitization. I’ll get my first 2 drugs at the cancer clinic, transport to the hospital where I’ll be in a private room with my own nurse. Over a 6-hr period, and 12 steps, they’ll introduce the Carboplatin thru IV in gradu
    3 points
  9. hillham

    Just diagnosed

    Lexi, I'm wishing you well with this trial. Thanks so much everyone for sharing all this information. It really means a lot to me. AleHondaa, you sound like a very strong young woman. Good luck to you. I'll look to you all for inspiration. I feel like such a newbie. The doctors want to start me on four rounds of pemetrexed and Cispladin once every three weeks, and radiation every day for six weeks. That's where we stand now. The bio results from the bloodwork should be ready on Monday.
    3 points
  10. LexieCat

    Just diagnosed

    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
    3 points
  11. AleHondaa

    Just diagnosed

    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
    3 points
  12. Hi NYViv, I'm from Rockland County! We have a few new NY members. I am Stage IIIB and EGFR+ also and have taken Tagrisso since March 2020. I previously had chemo and radiation just before starting Tag. I've found Tag to be very tolerable and effective. It's a miracle pill. I'm a member of 3 private LUNGevity FB groups related to EGFR and Tagrisso but I haven't heard of anyone in the trial that's being suggested for you. I will post the question in those groups and get back with any answers. I can also list the groups if you're interested in joining.
    3 points
  13. https://www.medicalnewstoday.com/articles/how-it-works-immunotherapy-for-lung-cancer
    3 points
  14. Judy M2

    Just diagnosed

    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
    3 points
  15. Judy M2

    Just diagnosed

    Hi Hillham, I am Stage 3b and have been where you are now. It's good you are getting biomarker testing so you'll know whether you have any targetable mutations. I went through the exact treatment plan your doctors are suggesting: 30x radiation and 6x carboplatin/taxol. From radiation I got a severe case of esophagitis that started about 10 days in and lasted for 5 months. (The lymph nodes being targeted were right on top of my esophagus.) I also had some serious complications from chemo or the steroid dexamethasone (no one can be sure which). My biomarker testing showed an EGFR mutation, which
    3 points
  16. Jennedy

    Just diagnosed

    Welcome, although I'm sorry you have to be here. This is a great place. I was like you, very active (marathon walker), healthy, when I found a lump above my left collar bone. That lead to xrays, CT scans, broncoscopies and an eventual diagnosis of Stage IV adenocarcinoma, NSCLC. Turns out the pain my shoulder was cancer, not an issue with my neck. Sounds like maybe you are stage III. Did they do biomarker testing?? I'm assuming they did if they are talking about targeted therapies. Do you know those results? The "curative approach" sounds promising. I had 10 radiation treatments to my lung and
    3 points
  17. Yikes! Several signs along the way! The first surgeon I saw said he doesn't do VATS for cancer. I already knew from being on several cancer forums that it's done all the time for cancer! If he had said, "you're not a good candidate because of where it is" or another science reason, I wouldn't have been suspicious... but "I don't do VATS for cancer" rang wrong to me. Also he was a thoracic surgeon, heart and lungs, but the only pictures and plastic models he had in the whole office were of hearts, no lung pictures or charts anywhere, so I figured he was more of a "heart guy" and not as experie
    2 points
  18. I dropped a note to the reporter, who apologized for how the article could be misinterpreted. Hey, I raised the awareness level of ONE person in the media!
    2 points
  19. Pharmacy didn't have what I was looking for but I did settle for tangerine-flavored Cepacol lozenges. I'll see how those work. At least it'll get my throat as well.
    2 points
  20. You also might want to hook up with someone from palliative care--they often know all the tricks to dealing with side effects.
    2 points
  21. Thanks, Judy! And I'll take your advice to heart I've been making a point of at least muscling down the liquids for that very reason. I can handle being a little hungry (I have some lard to lose anyway - LOL!) but inability to drink, nope. I'm going to be going to the pharmacy here in a few minutes to hopefully get some assistance for my mouth. And there's a double motive....the pharmacy also has a coffee shop and I'm treating myself to a strawberry frappe (non-caffeine). Aaahhhhhh, the icy coolness as it slips down my throat!
    2 points
  22. Hi, Viv, and welcome! I'm also Stage IV, but have no actionable mutations. After a good initial response to chemo/immunotherapy, my cancer started to progress and I'm starting a clinical trial this week (TIL therapy). It seems to me like this trial is comparing Tagrisso alone to Tagrisso plus Avastin, to see which is more effective. So to the extent the trial was "not really successful," it sounds like they didn't feel adding Avastin helped much. I kinda doubt they would continue to the next phase if there were any indication adding the Avastin to the treatment was in any way harmful to
    2 points
  23. Hey Jack- Personally I’m not a fan of these drinks anymore. When I was rowing I was a frequent user of protein shakes from Costco. Today I won’t eat any processed foods, particularly anything with more than five ingredients. Constipation is something I always have to battle too. I’ve resorted to making easy smoothies in the Magic Bullet- pumpkin, pear, walnut with cinnamon & nutmeg, blueberries, avocado & spinach with cinnamon or baked sweet potatoes works really well. I try to eat an apple a day with some almonds. It’s the perfect blend of a sugar, fat & fiber- great
    2 points
  24. LexieCat

    y

    y not??
    2 points
  25. “No Small Challenge: Emerging Therapies in Small Cell Lung Cancer” https://www.curetoday.com/view/no-small-challenge-emerging-therapies-in-small-cell-lung-cancer
    2 points
  26. Unknown00, I’m a 17-year survivor of stage IV non small cell squamous cell lung cancer. I’ve had a multitude of treatments, most unsuccessful but one that was. My doctor kept me alive long enough for a new treatment that resolved my lung cancer. I’m the rule these days rather than the exception. New therapies are changing the dynamic of our disease and vastly improving outcomes. So, my first suggestion is if I can live, so can your dad! I’m normally able to link to suggested articles new folks should read but I’m away from my computer and struggling with a cell phone. Perhaps another
    2 points
  27. Jesse L.

    Just diagnosed

    Hello and welcome from me to the forums... after reading over all the submissions I get the feeling that while you are understanding your options, you just don't know which way would be the best to go...that is if you're given a choice. I'm not that far different from you; at least so far... After they discovered (and removed) two affected lymph nodes during my lobectomy to remove my RLL, I quickly went from a stage 1a to a stage 3a. Mind you it's all well and good to get second opinions, but know too that prescribed courses of treatments can be sometimes standard regardless of where you
    2 points
  28. Schmutz is the medical equivalent of ground glass opacity, a diffuse pattern that often obscures a tumor. I had a 3cm tumor that was not visible on the x-Ray or CT scan. This schmutz looks like snow or cotton on the scan. Another diagnostic procedure before the treatment plan can be finalized is also the brain MRI. The MRI usually happens the same week as the PET scan. Good luck with the second opinion, we’re here for you.
    2 points
  29. hillham

    Just diagnosed

    Thanks Judy. Sorry to hear about the pain you went through with the treatment. I have an appointment Tuesday for a second opinion at Columbia, but so far have been seen at NYU Langone. I noticed that you were part of the WTC 9/11 program. Is that right? I was also told to sign up for that as I lived in the area when it all happened. Thanks so much for your response!
    2 points
  30. LexieCat

    Just diagnosed

    Hi there, and welcome from me, too! I think a second opinion before starting treatment is never a bad idea. I don't have any targetable mutations, so I'll let those with more knowledge/experience comment on that. Have they given you a stage? Has there been any discussion of surgery? Glad you found us, this is a great place for information and support.
    2 points
  31. Eagle13

    Durvalumab

    Hi Mike, Biomarker test can be done from a blood draw. Durvalumab did not work for me. I was not tested for PDL1 prior to the infusions. I had 8 infusions and ended up with a Pleural Effusion. I recommend finding an NSCLC specialist to get a second opinion and request the liquid biomarker test. 🦅
    2 points
  32. Hi all. Here I am again I have surgery booked 10th June 1 day before my 74th birthday, so survival, no complications and a smooth recovery would be a great birthday gift for me my fingers are crossed. Sadly though it will be an open surgery, yesterday I saw a senior surgeon a Professor, and he has explained to me why I have to have an open surgery this tumor is too close to my pulmonary artery for VATS but he says I will not notice any difference as he will keep the incision small and on my right side not my back I hope he is right as I am not looking forward to this at all, but I
    2 points
  33. Hello from me...just another person with cancer issues as well. Wow, if I had a dollar for everyone who thought they would never be on these forums... Don't get me wrong, I'm not trying to make light of the situation, but it is what it is. And that's an important point in itself...read on: 1. Let's face it, practically no one studies about anything cancer in their spare time so it's always a surprise whether it's you or someone you care for who "who all of a sudden" has it. You've acted quickly and I commend you for taking the initiative to learn all you can. I would always stress to anyo
    2 points
  34. Once you get a definite diagnosis (type/stage/treatment plan), it's best to work on getting him to accept that even though cancer (even incurable cancer) is most often VERY treatable, this is a marathon, rather than a sprint. These days, lung cancer has more and more become what amounts to a chronic condition--like diabetes or heart disease. With the right treatments and a modicum of luck, he can live for quite a while--maybe years and years, depending. But it's something you have to stay on top of so it doesn't get away from you. And BTW, your English is just fine.
    2 points
  35. Yay for shrinkage! Boo for pneumonia, any kind. Hang in there.
    2 points
  36. Hey, Sally, great news! Hope everything gets squared away for you soon, but having the tumor shrink is HUGE! Keep on keepin' on!
    2 points
  37. Good news! Had my scan Monday and my tumor has shrunk! I do have pneumonitis in both lungs but it aspiration pneumonitis from the GERD and not from the radiation. My lungs have become more fibrous and I will be getting a scope to check on the esophagus but I’m very relieved and hopeful. Thank you, thank you to everybody who reached out, you kept me sane! Peace p.s. Oh and the radiation even shrunk some of my sarcoids!
    2 points
  38. NYViv

    NSCLC Stage IV - newbie

    Hello, I recently joined and am really amazed by the info and encouragement here. I was recently diagnosed with NSCLC adenocarcinoma in the lower lobe of right lung, stage IV (both lungs and small spots on my liver). I'm EGFR+ and so my oncologist prescribed Tagrisso, not started yet. Yesterday I was thrown for a loop as he is now recommending that I join a phase 3 trial. The trial has 2 arms, one with Tagrisso alone, the other with Tagrisso + Avastin (ECOG-ACRIN). I read that the phase 2 trials were not really successful, so I'm highly conflicted about joining the trial at this time as I was
    1 point
  39. Judy M2

    NSCLC Stage IV - newbie

    Here is another answer about the trial. Please note that I highly recommend a port if you'd be getting any chemo. "I was in this trial when first diagnosed 2/18. I had brain mets at the time so the avastin made some sense. The downside is that I had to get a port right away in my journey--something I could have avoided for several years had I not taken the avastin. I progressed 9/19--about the time it was predicted I would progress had I only taken tagrisso. Hard to say what the avastin added to the treatment but it had a negative effect on my kidneys over time and added to the side affe
    1 point
  40. Tom Galli

    Just diagnosed

    hillman, I am the 17-year guy Lexie mentioned who was recently pronounced “cured”. III B was my diagnosis, but I progressed to stage IV after my first of 5 progressions. I’ve had every form of treatment but immunotherapy. I had a targeted therapy drug Tarceva before doctors knew it only worked for a very small percentage of adenocarcinoma patients. This treatment was well before biomarker testing was perfected. My experience suggests that attitude counts. Furthermore, you should learn about our disease. Lung cancer 101, on the LUNGevity Foundation website, (LUNGevity.org) is a good
    1 point
  41. Hi there, and welcome. What kind of side effects depends on the specific chemo you are getting and also on you. Not everyone with the same chemo has the same side effects. If you'd like to share more about what kind of treatment you're getting, some of us here might be familiar with that treatment and give you some thoughts about what you MIGHT experience. Incidentally re any kind of supplements (as you posted on the other thread) that, be sure to tell your oncologist or nurse practitioner about any kind of supplements you'd like to try. Some don't mix well with chemo.
    1 point
  42. Thanks so much Lexie, so far he is talking about just taking a piece of my RUL but won't decide until he looks, he is Malay and has small very fine hands that and he seems to be a type for fine detail perhaps that's why he can keep the incision small, he said I won't notice much difference I sincerely hope he right, but in the end I have no choice but to surrender to the process and hope for the best. I have been reading your posts and I hope that everything works out, I am sending you good vibes for a great outcome, and thank you for the encouragement. May the force be with you
    1 point
  43. PMD

    Durvalumab

    Thank you everyone for your very helpful responses. I've not had a biomarker. The bronchoscopy was unable to take sufficient sample, I only have one lung, and a needle biopsy was regarded as too risky. My oncologist isn't very receptive to complimentary treatments. So I don't feel able to discuss with her. In any event, I have decided to hold fire on THC for the time being. Kind regards Mike
    1 point
  44. Judy M2

    Introduce myself

    I have heard of hiccups from decadron but there wasn't a solution (yet) in that patient's case, unfortunately. Good to hear from you. Hope you can get that Keytruda BBQ soon.
    1 point
  45. PCW

    Introduce myself

    Hi Everyone! how are you folks? It has been two weeks since I put in a post and would like to bring a little updates. Finally, last Monday, I was started on my 3 drugs regimen. My oncologist noticed that my SOB had worsen. He decided to give chemo over the course of three days: Day1: alimta and half a carbo dose. Day2: half the remaining carbo dose, then go to have a cat scan to see how bad my MPE had spread. Day three: the miracle drug Keytruda whose commercial has promised a nice barbecue with family. After the second day, I was called to reported to ER ; cat scan showed almost entire op
    1 point
  46. Trailwalker

    Sclc extensive

    Hi all. I have been lurking since February and decided it was time to introduce myself. I am 62 and was diagnosed in February with multiple masses in right lung and liver. Also in lymph nodes. I tried to get in to see PCP in November due to increasing SOB, coughing and wheezing. But because of covid it took until January to be seen. x-ray showed mass in lung. Started treatment( etoposide,tecentriq,and carboplatin) March 15th. Was supposed to be 3 days but ended up in hospital with heart failure after 2nd treatment. Turns out the SOB, wheezing and coughing were not a result of the cancer but
    1 point
  47. Thank you, Tim. Congratulations on NED! You may have more options, if/when needed. There are many ongoing clinical trials testing new lung cancer treatments, including targeted therapies, chemotherapy, radiation therapy, and immunotherapy, alone and in combination. Our partners at EmergingMed offer a clinical trial navigation service- connect with them at 877-769-4834
    1 point
  48. Lisa - I am happy that you got your hip surgery figured out with insurance. I get so frustrated when I have to advocate aggressively for my mom to get the care she needs. If it weren't for my advocating, she probably would have succumbed to lung cancer 3 years ago. I feel bad for folks who don't have an advocate to help them navigate our complex medical and insurance systems. My mom was too sick to research and think about how to solve the problems she has had along the way. I really noticed the lack of good healthcare my mom had while in the hospital during the month of December. No visi
    1 point
  49. I work in finance and this was in my email box first thing yesterday morning from a colleague for multiple reasons https://www.businesswire.com/news/home/20210413005428/en/
    1 point
  50. LexieCat

    Introduce myself

    You'll have to see what your oncologist comes up with. She's going to look into any available clinical trials--those can give you an opportunity to benefit from the latest, most promising new treatments. If there are any that might be appropriate, she will explain them. Otherwise, as we've been saying, the mainstream treatments can be very effective. How's your cough? Did the medication help at all?
    1 point
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