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Showing content with the highest reputation since 05/04/2021 in Posts

  1. Barb1260

    Durvalumab

    Exactly one year ago I had my 26th and last Imfinzi infusion. So far so good!!
    5 points
  2. 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
    5 points
  3. 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
    5 points
  4. 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
    5 points
  5. LexieCat

    Just diagnosed

    LOL, when I was a kid, my mom cut her finger in the kitchen and had it bandaged up. One of the neighborhood kids asked what happened. She told him, and sadly said, "I'll never play the piano again." "Oh, no!" the kid said. My mom said, "It's OK, I was never able to play it before." I should ask my doc whether I'll be able to run 5 miles after treatment. And then inform him how great that is because I could never do it before!
    4 points
  6. hillham

    Just diagnosed

    Thanks Lou! I just had a meet with a doctor at Sloan Kettering. It seems that they, Columbia and NYU Langone all agree that I should start with the chemo (4x every 3 weeks) and the radiation (6 weeks), followed by the targeted therapy for the ROS-1 mutation after that is all over. We are going to start it at NYU Langone. I'm learning a lot and steeling myself for a hard road. It's been an emotional few days (weeks?) but now that a plan is in place, I'm feeling a bit steadier. I ran five miles yesterday just to prove that my body still works. It felt great. Planning session for th
    4 points
  7. Hi Mike, I'm so sorry for your diagnosis. But here is the bright spot: you are EGFR+ and going to start on Tagrisso. The EGFR mutation is most common in never-smokers. I was diagnosed with Stage IIIB EGFR (Exon 19 deletion) in October 2019. I had chemo and radiation and started Tag in March 2020. I would say that your shortness of breath will decrease within a few days of starting Tag, believe it or not. I have heard this from several people. At least in the meantime have your pulmonologist prescribe an albutirol inhaler. I still carry mine in my purse but never need it anymore. Tagrisso
    4 points
  8. hillham

    Just diagnosed

    My doctor just called and told me that my biomarker results have come back and that I have the ROS-1 fusion mutation. He seemed very happy about this. He still thinks I should start on the chemo/radiation, since I'm stage 3, but we have another opinion tomorrow at Sloan Kettering. My head is spinning again!
    4 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.
    4 points
  10. Judy M2

    NSCLC Stage IV - newbie

    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.
    4 points
  11. Opal

    Durvalumab

    Yeah Barb!! It's hard to believe isn't it!? You go girl!!! Let all of us in the Durva Club celebrate many more anniversaries with you! Opal
    3 points
  12. Rower Michelle

    Just diagnosed

    That’s the same plan my peer mentor had- chemo/rad followed by targeted therapy. She’s been in remission now for three years. The emotional roller coaster will even out over time. Let us know how we can help you get through starting treatment. We’re here for you.
    3 points
  13. Rower Michelle

    Durvalumab

    Hey Barb! It’s a weird anniversary someone outside our circle of friends here would understand so a big hug of congratulations to ya!!! That’s great!
    3 points
  14. 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
    3 points
  15. @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
  16. 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!
    3 points
  17. LexieCat

    NSCLC Stage IV - newbie

    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
    3 points
  18. NYViv

    NSCLC Stage IV - newbie

    Thanks all, this is very intense. But your insights are much appreciated. I have decided to go ahead with the trial but must confess that I'm closely monitoring the results for possible self extrication if I don't like where it's going.
    2 points
  19. Jesse L.

    Just diagnosed

    I wish you well with your initial treatment plan and the follow up with your actionable mutation. As LexieCat states, it's always better when the plan is in place and then you've started it. Now, I'm not trying to throw some rain on your parade, but I will tell you that chemotherapy will put a damper on your usual vigor. And please prepare for the side effects as best you can; they can be harsh as I'm learning myself... Before covid19, I'd go to Planet Fitness three times a week for an 1.5 hours of weights and a half hour of cardio, but now I'm relegated to walking my neighborhood on the
    2 points
  20. Hi, Mike, and welcome from me, too. I'm also Stage IV but no targetable mutations. I had progression after a few months of chemo/immunotherapy and just started a clinical trial. You've gotten great info/advice above. The EGFR+ Tagrisso folks will have the knowledge most relevant to you, but the entire forum is a great place for knowledge and support. Glad you found us!
    2 points
  21. Mike, Welcome here! So you have stage IV non small cell lung cancer, adenocarcinoma, with biomarker testing revealing EGFR. You’ve had precision radiation to bone and brain mets with apparent good results. And, you will soon start systemic treatment in the form of the targeted therapy Osimertinib. You are also having a monthly (likely) infusion of a drug (likely Zomenta) to replace bone structure lost from bone mets. Your question is addressing shortness of breath. Can Osimertinib relieve that symptom? Maybe, hopefully, but I’d suggest a consultation with a pulmonologist to asse
    2 points
  22. LexieCat

    Just diagnosed

    Great news!! A second opinion never hurts, but it sounds like you've got some very good options.
    2 points
  23. Rower Michelle

    Just diagnosed

    Well that is really great news! The targeted therapy for ROS1 is very effective, there are survivors who have been in treatment for years now. You may want to check out the ROS1ders on Facebook where there will be a lot of great information to help you prepare for the appointment at Sloan.
    2 points
  24. There you go... Now mind you, I kind of thought that's what would happen. You'll still get the Carboplatin, but it will be under intense care. FWIW, they were originally going to give me Cisplatin, but due to the increased side effects (otoxicity-quite possible loss of hearing), they changed it from Cisplatin to Carboplatin before my infusions were to start. When I looked up the difference between Cisplatin and Carboplatin, the information I got was that Cisplatin had a few more possible stronger side effects, but was about one to two percent more effective than Carboplatin. However, Carboplat
    2 points
  25. 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
  26. 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
  27. 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
  28. 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
    2 points
  29. 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
  30. 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
    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. I don't know what to say excepting that I'm thinking of you and sending you the best of thoughts in handling your current treatment plan. For me I didn't know that I could possibly have such bad indigestion...like nothing I've ever had before!! It is just awful!!😝 Just got to get through it though...that's the way it is...
    1 point
  33. Judy M2

    Just diagnosed

    Glad you've got your treatment plan. The worst part is waiting for that. Like Jesse says, chemo and radiation may give you fatigue and other side effects after several sessions, but just know that they are temporary--and the treatments are very effective. I had a particularly rough time with both but I'm back to normal now and consider everything I went through to be worth it. You can do this!
    1 point
  34. LexieCat

    Just diagnosed

    Great news--I think we ALL feel better when the treatment plan is in place. Keep us posted!
    1 point
  35. BridgetO

    y

    but y?
    1 point
  36. Annabelle Gurwitch is a member of one of the Facebook EGFR groups, and I've read about her difficult lung cancer story in other articles. She was recently on the Today Show to bring awareness for the need for research and funding: https://www.today.com/health/covid-19-test-leads-lung-cancer-diagnosis-annabelle-gurwitch-t216306 And a Philadelphia chef and his wife are in the news, also to raise awareness: https://www.inquirer.com/food/jim-burke-lung-cancer-tag-time-hapy-hour-20210504.html Great job by both of them.
    1 point
  37. I too had to read up about what Carboplatin desensitization is...I had never heard about it before, but I guess there is always something else to learn. In any case, I do remember my first infusion on 4/5 and how closely they watched me every second that Carboplatin was being put into me. It was kind of unsettling in that the nurse sat not four feet from me and I swear she never blinked once during the entire 30 minute infusion. When I asked her why she was staying so close and eerily staring at me, she told me that some folks react badly (allergic?) to Carboplatin. Well, other than the expect
    1 point
  38. Sandy, if you continue to not be able to drink, ask your infusion center to give you IV hydration through your port (if you have one). Dehydration really messes up your mind. I went 3x a week for hydration.
    1 point
  39. When I was in the hospital, my surgeon (of all people) recommended Cepacol lozenges, which were OK for temporary relief. I love MuGard but it's like $500 a bottle. My chemo nurse just gave it to me. Works great for mucositis.
    1 point
  40. Quite actually my recommendation for what I know is a combination of diet change, exercise, and perhaps Lasix if needed (most likely). Doing nothing is just begging for a bad outcome on your other bodily parts and functions. There is good information on the Web about foods that are best to eat to minimize edema or if there is a dietician associated with where you get your care you may want to consult with that person. I also couldn't emphasize enough the importance of exercise to keep the system moving so to speak. Lots of folks have lots of reasons for not exercising, but you really sho
    1 point
  41. LexieCat

    NSCLC Stage IV - newbie

    Remember, there's never any obligation to participate in any particular trial. The one I'm about to start is gonna be pretty brutal on my body, but if I didn't think I had a shot at a terrific outcome for myself, there's no way I'd put myself through that. If I were you, I'd ask the oncologist to spell out exactly how he thinks this could be of potential benefit for YOU. If you're not satisfied with the answer, then I think you want to carefully consider whether to do it. I'm in a couple of other studies--one to assess the benefits of looping in palliative care at the beginning of
    1 point
  42. NYViv

    NSCLC Stage IV - newbie

    Hi Judy, yes they seek treatment naive patients. Indeed the logistics are a bit onerous compared to Tagrisso' simplicity. Frequent check-ins and testing are required to monitor for side effects etc.
    1 point
  43. NYViv

    NSCLC Stage IV - newbie

    Thank you Lexiecat and Judy for your responses. Much appreciated. I'll try and find and post the link to the study. I am leaning towards doing the trial but a bit emotional about new decision making. Again thanks.
    1 point
  44. Thanks for the article, @LexieCat. I posted on the FB Tagrisso page, where some of the members hadn't even heard of biomarker testing.
    1 point
  45. Tom Galli

    y

    y = mx + b
    1 point
  46. https://www.medicalnewstoday.com/articles/how-it-works-immunotherapy-for-lung-cancer
    1 point
  47. Judy M2

    My Story

    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
    1 point
  48. LouT

    Introducing myself

    Shella, Yes, at the first whisper of lung cancer it is easy to have all of your worst fears come to life all at once. I've been there myself and so have all of my family on this site. The only thing I know is that you need to take one step at a time. The waiting for results can be excruciating, so you need to keep yourself busy and as optimistic as possible. Then when you are finally presented with a plan to battle this disease a change does occur. You will have more information and more knowledge and a plan to go after it. So please stay as rooted as you can, try not to "catastroph
    1 point
  49. KM_NRP

    Introducing myself

    HI Shella, I'm in the new stage like you, so I don't have much advice. The one thing I can say is that I understand you grief waves. I try to let myself cry sometimes, it's part of being normal. Then other times, I try to keep busy and focus on good things in life. It's ok to be normal.
    1 point
  50. Same for me--I have Stage IV adenocarcinoma, have had a great response to the triplet and am now on the same combo of Alimta (pemetrexed) and Keytruda (pembrolizumab) as Gary. I didn't have brain mets (I do have a small bone met). Often radiation is used to treat brain mets. Any talk about that? Lung cancer isn't what it used to be. We have survivors of advanced stage cancer who are 15-20 years out from their diagnoses. So not quite time to be throwing in the towel. New discoveries and new treatments are coming out every day.
    1 point
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