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Showing content with the highest reputation since 05/13/2021 in Posts

  1. I just finished reading my oncologist's book about his experiences in life and his journey as a cancer doctor. It was a quick and friendly read. Here is an excerpt that I think captures the spirit of the book: "In truth, I've been an oncologist long enough now to know that fear, confusion and hopelessness can take over very quickly--like a few seconds after bad news. They are the trapdoor--away from healing, away from empowerment, away from peace. The trick to avoiding that trapdoor is remembering that how you are doing is correlated with what you are doing. Tiny actions lead to feeling a tiny bit better, a tiny bit closer to where you want to be. So instead of shutting down, meet one of your most basic obligations, and then another. Eat something healthy, walk when you can, take your medicine, listen to your favorite song, keep your appointments, talk with your family, call your friend, tell someone you love them, watch a funny movie or reread that book you love. Do the things you must and do the things you love--that's the oncology patient's equivalent of putting one foot in front of the other, moving away from that chasm of hopelessness a little at a time. Inching closer to peace." When my husband and I first sat in Dr. Steven Eisenberg's office, he rubbed the top of my husband's head while he told us how he wanted to (aggressively) treat my Stage IIIB adenocarcinoma. I'm not sure why he did that, but I knew then he was like no doctor I'd ever met before. He's been a great cheerleader for me throughout my treatments. I recommend this book for both patients and caregivers. Dr. E tells about his near-death experience as a teenager and the struggles he's had in his chosen profession, the people who motivated him to overcome it all, and how he has come to use music to form a strong bond with his patients. I hope just this post will help someone who is going through a rough time. I think that reading the book could help even more.
    7 points
  2. DAC

    Hello

    Thank you for acknowledging my post. Your optimism is contagious. Presenting my cancer as a chronic illness to my family will hopefully put them more at ease with this illness. Wishing y'all the best results with your treatments and trials. One more note - Cancer did have an upside for me - it cured my chronic procrastination.
    7 points
  3. This same thing happened to me 2 1/2 years ago. Random ct found 9mm nodule in lingula. I got a pulmonologist immediately and he ordered a pet, mine is a bit bigger than yours so he felt pretty good that it didn’t light up at all. I have had a 6 month scan ever since, my last one being Jan. with no growth. He said it’s probably benign or it’s growing so slow prob won’t even harm me the rest of my life, I’m 54. I will continue to get scanned yearly just as a precaution. The reason I’m responding to this is because when I found out about this I freaked so hard and thought I was dead in 6 months, so I want to give you some hope and peace that you will get through this and you will be fine. Love and Light
    6 points
  4. Bang, I could be wrong, but you may be letting your mind catastrophize symptoms that turn out not to be caused by cancer. You really need to try and reel in your imagination and do a few things. 1. Learn about Lung Cancer. You can do that by reading a blog called, "10 Steps to Surviving Lung Cancer; by a Survivor", you can find it here. 2. Ask questions of your doctors about the symptoms and the most likely cause for them. If you need to then write them down and have someone go with you to the appointments. They can help you stay focused and may catch things that you miss because of emotions. 3. Accept the fact that you need a diagnosis of cancer in order to have cancer. I realize that you have fears, but you need to adopt a different approach or you will put yourself through a lot of misery that may not even have a basis in fact (and diagnosis). I was a person who did to myself just what you appear to be doing to yourself and folks here helped me to focus on the facts and wait for results before I jump two steps ahead of the doctor. Please try this approach for yourself. I hope the nodule is like 60% of nodules and not cacncerous. Lou
    6 points
  5. Hi Karen, I am one of those Stage IIIB patients who was not a candidate for surgery. I had 6x chemo, 30x radiation (to both tumor and lymph nodes) and now take a targeted therapy pill daily for my EGFR genetic mutation. My particular mutation does not respond to immunotherapy. So, as Lexie says, your oncologist will need the results of your molecular/biomarker test results in order to create a treatment plan for you. My biomarker test results took about 2 weeks after my bronchoscopy. It's hard to wait so long but necessary. The good news is that after 14 months of treatment, I have achieved the goal of No Evidence of Disease (NED).
    6 points
  6. hillham

    Hello

    This thread really picked me up today. I have a stage 3 diagnosis (April 26th) and began chemo last Friday. Yesterday was my lowest day, and I felt like I was dying, but like a miracle, I feel healthy today and am out on a walk! Thanks for the optimism everyone. I’ve never needed anything more.
    6 points
  7. I would recommend seeking out a board certified pain management physician given the dose and duration of the MS Contin, where they can evaluate an alternate treatment plan- the body’s pain receptors have to be literally re-wired. This is very doable with the right pain management team.
    5 points
  8. This doesn't really answer your question, but my situation seems similar to yours. I was diagnosed with Stage 3 adenocarcinoma in April. There is a very tiny tumor in my lower right lung, and involvement in a few lymph nodes near the lung. Three hospitals told me they could not operate because of one lymph node that, like yours, is near my right collarbone. Biomarker results came back in about 8 days, and they found the Ros1 mutation. I started Chemo two weeks ago (Cisplatin and Pemetrexed) and I didn't feel sick for more than a day and a half. We'll see how round 2 goes this Friday, and then there will be two more rounds after that, three weeks apart. I also started radiation last week for the mini-tumor and lymph nodes, and I think my biggest challenge is probably going to be esophagitis. So far, I don't feel anything, but I'm trying to brace myself. The doctors seem to think I should go on one of the targeted drugs for Ros1 immediately after treatment - not sure which one. As far as immunotherapy goes, no one has said a word about it, even though my results came back PDL-100% Good luck with everything and keep us updated if you can. KH
    5 points
  9. Thanks, Judy, Just downloaded it for my Kindle app on my iPad. I remember when I was going through my initial diagnosis back in 2017 (lobectomy), I read "Emperor of All Maladies." It's all about cancer research and treatment through the ages, and it's an absolute page-turner (they made it into a PBS miniseries, too). I mentioned it to my surgeon, who was also a huge fan of the book. Every challenge I have faced in my life has been helped by the reading I've done. When I get bad news (or puzzling or concerning news or circumstances in my life), books are my best friends. I guess it's my way of regaining a modicum of control--over myself and my attitude, even if I can't change the facts.
    5 points
  10. LexieCat

    My heart is breaking...

    Hi, Gray, and welcome. I'm sorry about your aunt's diagnosis, but this is a far from hopeless situation. You will know more when the tests are done, but I suspect, based on the size of the primary tumor, she's most likely Stage III or IV. It's important to know what type of nsclc she has (adenocarcinoma, squamous, large cell, etc.), and her treatment team should send out samples for molecular testing--for that, she might need a biopsy, even if they were able to ID the cancer from the fluid. Nobody wants to be dealing with lung cancer, obviously, but it isn't the hopeless situation it used to be. There are people on this forum 15-20 years out from an advanced cancer diagnosis. More and more, it has become possible for many people to treat their cancer like any other serious chronic disease. Please try not to treat her like she's checking out anytime soon--she could be around for years to come. I'm sure she would appreciate your concern, but try to encourage her to stay positive. There are many great new treatments out there and more being developed every day.
    5 points
  11. LexieCat

    Hello

    Hi, Delia, and welcome from me, too. This is a great group--they've seen me through everything from my initial diagnosis and lobectomy in 2017 through my recurrence in the other lung last summer, progression of my cancer after an initial great response to chemo/immunotherapy, and where I am right now--just starting a clinical trial for a personalized TIL (tumor infiltrating lymphocytes) therapy. I'm fortunate that most of my family and friends have followed my lead, but as much as I love them, I'm VERY thankful I don't have to rely on them for support. They don't know what this is really like and yes, I spend a lot of time/energy trying to make them not worry. Glad you're here--hope both of us have success with our trials!
    5 points
  12. Judy M2

    Hello

    Hi Delia, at 67 I'm close in age to you. I was also diagnosed at Stage IIIB in October 2019 but with an EGFR gene mutation. I also had 6x chemo and 30x radiation prior to starting a targeted therapy (which is not immunotherapy) in March 2020. I actually had a really rough time with chemo and radiation and was very sick for the first half of last year but have since recovered and am now NED. I think I've gotten past being seen as a patient by my friends and family, mainly because they've seen me get back to almost normal. (My husband probably still worries about me more than he lets on.) It may take some more time for your loved ones to adjust to your diagnosis. After all, they may not be aware that today many of us are living with NSCLC as a chronic illness. We are here for any venting you need to do. On the bright side, your doctors sound very supportive. Glad you've joined us.
    5 points
  13. Tom Galli

    Lung cancer returned

    Iris, Welcome here. Recurrence for most seems to be par for the lung cancer course. I've had 5 since my February 2004 diagnosis and have experience every form of lung cancer treatment save immunotherapy. I'm still here and my bottom line is if I can live, so can you. You all ready know a lot about your treatment future. A recurrence find is much line an initial find. More than likely a biopsy will not need to be repeated but there will be a treatment plan at the end of diagnosis. You didn't mention your original stage or type of lung cancer. It might help to reveal this information if you are comfortable because it will give us insight into what your future may be, treatment wise. Stay the course. Tom
    5 points
  14. Just a quick update. The biopsy result is NSCLC adenocarcinoma. We're in the process or arranging many other tests this week. We should have the results by the end of next week or within 10 days. Fingers crossed it hasn't metastasized. 🤞
    5 points
  15. PCW

    Introduce myself

    Hi Everyone, I did get my Keytruda the following Tuesday. Didn’t get ( thank God) major SE except a little vertigo. I’m scheduled to receive my next round of chemo on the 18th. I never imagined before I would look forward to receiving my chemo. This time, I will get all three agents on a single day. Lou, my hiccups would stop once decadron is D/C so not a major big deal for myself. I know Lexie is undergoing her clinical trial at the moment and I sincerely hope the best for her from the bottom of my heart! Meanwhile, hope everyone’s taking good care of her/ himself! Till next time. Regards to all. Paul CW
    5 points
  16. Take a deep breath. All of these are small..but concerning. What does the onc think? Are the nodules in the same lung? (Looks like they are). If so, surgery may be a viable option. You have plenty of time for diagnosis, so try not to freak too much. I have (had) large cell stage 3. Lobectomy followed by chemo and radiation. 18 months NED. Keep us posted Peace Tom
    4 points
  17. It seems we received some good news today. My dad had his bronchoscopy today and the pneumologist said that to him it is most definitely not cancer but some kind of infection / congenital defect of the way his lungs are formed. Though they took some samples to see what kind of tissue / infection it is. Tuesday we will receive the definitive results (PETCT etc). I really hope that the pneumologist is right
    4 points
  18. My wife had a similar situation, in case it helps inform your actions. She is 70 and was asymptomatic two years ago when a CT scan showed some minor growth in two small right lung nodules. Stage 1A. Largest had grown to 1.3 cm. She has COPD so the only recommended surgery was wedge resection. Lobectomy would have put her oxygen forever more. During surgery, the margin was considered clean by microscopic exam. The surgeon claimed the margin was clean under the staple. Apparently the micro METS evaded detection. Three months post-op, CT showed “nodularity” and “thickening” at the surgical site. Despite the surgeon’s intra-operation interpretations, the DX was malignant pleural effusion and Stage 4. Thorocentesis one time, then we went immediately to the chemo/keytruda triplet. So far, we have had great results. In eight months we have moved to Keytruda only after NPD and significant node size reduction at the surgery site. From what we have learned, this sort of thing is fairly common. The wife is functioning in full work mode and has only some SOB as side effects. We advise to get and save copies of each and every scan and pathology report. We wonder now whether the surgery attempt was wise without adjuvant rads/chemo. On the other hand, we see plenty of folks who have done all sorts of pre- and post-operative treatments and had similar MPE results and METS. Get familiar with the terms so you can help these marvelous professionals help you.
    4 points
  19. Glad to hear that you are more at ease. It's really important to let the diagnostic process run its course and get the final results. If you believe your dad may misinterpret information you may want to see if you, or someone else, can be there for him during his office visits to act as a record keeper and ask questions he may not think of. I hope this is situation is even better than you think. Lou
    4 points
  20. I know I am coming out of nowhere but I got "Emperor of Maladies" based on LexieCat's recommendation. I downloaded it from my library and am listening to it on my headphones. It is amazing! There is so much I didn't know about the history of cancer discovery. Somehow things make a little more sense. Thank you very much, LexiCat.
    4 points
  21. Hi, there, and welcome. My cancer shows up as white on the CT scan, but if they were sure it wasn't cancer they wouldn't be doing a biopsy. There's really no point in getting too worked up over the various possibilities until you know what's going on. You should know by next week or the week after. The important thing to focus on is that most lung cancer is now very treatable--the exact kind of treatment will depend on the results of the testing. They should also send out any tissue samples collected during the biopsy for molecular testing. One step at a tine--this testing and waiting for results is one of the hardest parts of this whole thing. And I'm totally NOT judging you for being a smoker (I smoked for almost 40 years), but I hope you can manage to quit--this is a disease NO one wants.
    4 points
  22. Thank you everyone for all of your comments. It’s such an emotional roller coaster. I’ve been reading a lot of articles from this site and others just so I have a basic understanding. Your comments and clarifications really help me.
    4 points
  23. I'd just like to add, though, that sometimes knowing what the words mean in a report isn't enough. Radiologists who read scans and write the reports are not oncologists. I'd much rather know what my oncologist thinks about my scan than what the radiologist thinks. Your oncologist knows you and your cancer better than anyone else.
    4 points
  24. Hi bang - it's natural to have your mind go to all the "what ifs" but do try to remain calm and take one thing at a time. 💜 As Lexie says 6mm is TINY. I was diagnosed with colon cancer 5 years ago and it was removed, stage 1, and I have now reached the all clear point with it. At the time of that diagnosis, they also found a 8/9mm spot in my left upper lung. Like your pulmonologist has with yours, it was put on the watch list and looked at in my regular scans. Because even though lung cancer doesn't usually metastasize to the colon, colon cancer does tend to metastasize to the lungs and liver. Four years later it grew 2mm and we did a biopsy that showed adenocarcinoma lung cancer - the good news being that it it was not a colon cancer spread. That was also removed and fingers crossed I am good to go! SO. It's great you're seeking information and support! Hopefully your journey will be uncomplicated and nothing to worry too much about. Get the colonoscopy and go from there. When it comes time to do the prep, I can give you some tips to make it easier. Also there's a great support group at The Colon Club: https://coloncancersupport.colonclub.com
    4 points
  25. Hi, Sarah, and welcome. Assuming she has VATS surgery, it will be pretty easy going, from her point of view. I had my lobectomy in 2017--it was three tiny incisions on my back and side and that's it. My C-section hurt worse, and longer, than my lobectomy. Most people are in the hospital only 2-3 days, barring any complications. I was out with friends to dinner and a concert 1-2 weeks after getting out of the hospital. I needed the heavy-duty pain meds for only a couple of days and then ibuprofen was enough. It's important that she do her breathing exercises--they will make her cough, but that's encouraged, to clear her lungs. She'll also find it more comfortable for the first 2-3 weeks or so to sleep on a wedge pillow--it's easier to sleep if your upper body is elevated. One of our members, Lou, put together a list of tips and tricks for surgery: https://forums.lungevity.org/topic/47249-thoracic-surgery-tips-and-tricks/
    4 points
  26. Wyde1340

    My Story

    I was dx with Stage 4 non-small cell squamous lung cancer in December 2018 (on my birthday) at 47 years old. My only symptom was a swollen lymph node in my neck that didn't go away after a month. Blood work only showed a slightly elevated calcium level (should be between 8.6 and 10.4mg - I was 10.6)...normally wouldn't raise the alarm. However, I had a history of smoking, so my doc suggested a CT scan. The CT scan was from my neck to top of lungs. It showed a mass in my right lung. Doc then sent me for a biopsy of the lymph node & it showed NSCLC squamous. Next up, PET scan...was only in my lung and lymph mode. Onco put me on Keytruda because my PDL1 was 100%. Oh, the side effects were terrible. I lost 30 lbs and believed that I was close to death. At the end of 3 months, my onco did another PET scan. Now, my cancer was on my skull, shoulder, lymph nodes, adrenal glands, ovaries, hips, femurs and foot. By this time, he had gotten back my biomarker testing. I had MET amplification with 3 others, but MET amplification was high, so he put me on Crizotinib (Xalkori). During this time, I had radiation on my hips, femurs and foot. In the middle of radiation, I broke my femur (left) and foot (right). I was unable to have my femur repaired for 3 weeks. There were no painkillers to help this pain. I didn't take a shower for 3 months, because I couldn't get upstairs. I finally had my femur fixed (had rod installed) and foot was in a boot. Crizotinib started working within a week. The lump on my skull went away. I could breathe better and my lymph node was gone. I had to cut down from 2 tablets a day to one, as I did have some side effects. I had SBRT to my lung lesion and had no side effects. It shrunk my lung lesion. In 2020, my rod in my femur failed and I had to have a partial hip replacement. I'm happy to say, I have no pain anymore & wish I would have been given that option in the beginning. I also had cryoablation done on my adrenal gland. As of today, I am 22+ months stable and I'm still on Crizotinib. I only light up some in my lung and one adrenal gland. They both may still be residual inflammation from the SBRT and cryoablation. In between these past 2 years, I had pneumonia once, pain in adrenals and c-diff which required a weeks stay in the hospital. So, hold on to hope!! Get a great onco and team (preferably a bigger university hospital or cancer only center). Do as much research as you can and advocate for yourself!!
    4 points
  27. BridgetO

    New caregiver here....

    Hi CoCoNG and welcome here. I'm glad you found us. I'm sorry for what your husband and you are going through. You wonder how you will get through this. You're in a 12-step program, so you understand "one day at a time". That's how you do it. and if one day seems impossible, then one hour, or even 10 minutes. You can do this. One suggestion I have is to ask for a referral to a palliative care doctor. Some people think palliative care is the same as hospice, but it's not. (Although palliative care can be part of hospice services). Palliative care aims to help people who have serious illnesses deal with pain and other symptoms such as breathing problems and nausea, whether caused by the illness or the treatment. It focuses on helping patients have a better quality of life. Hang in there and let us know how we can best support you. Bridget O
    4 points
  28. TJM

    New caregiver here....

    No masks here. Just use us as much as you need to. FWIW, as a patient, your being there and caring and helping are probably appreciated much more than you know. I know for myself, that without my wife's support, life would be hell. In my thoughts Peace Tom
    4 points
  29. CoCoNG

    New caregiver here....

    Thank you & im grateful you have had some success. I don’t want to get into all our gore details. It’s been hell & probably what I’ve learned this most is that we have to research & be our own advocates or our loved ones advocates sadly. It’s been difficult trying to find someone in the medical community not to treat him just like a # & remember he’s a human being w/ a family that loves him & a career that he loves helping families & countless lives. I’m grateful we’ve finally found a good oncologist; I guess 3rd time a charm. Ha. God bless you on your journey. Hugs. And thanks for responding.
    4 points
  30. Lung cancer does not tend to metastasize to the bowel/intestine, nor to the prostate. There are certain places it tends to go--to the bone, liver, brain, adrenal glands, and a few other places. But I've never heard of a lung metastasis to the intestine or prostate. Six mm is TINY--it would be very, very unusual for a nodule that size--even if it's cancer--to metastasize to the extent where it could be seen or cause symptoms. The vast majority of lung nodules are benign. I can't say what's going on with your intestines and prostate, but as far as the lung nodule is concerned, re-scanning in six months is standard procedure and reasonable.
    4 points
  31. Yes. All of this thus far is in line with the standard of care. It doesn’t necessarily indicate a stage IV diagnosis. Today Stage 3 lung cancers are treated more aggressively with better outcomes. Remember that diagnosis is not prognosis. Given the high rates of recurrence, once the lymph nodes are affected, systemic therapy is the best course. The B12 & Folic acid are administered in advance of chemotherapy as it can deplete the B vitamins. It takes about a week for the vitamin B levels to be raised for chemo. Waiting for the biomarker tests to return is also correct in that the physician is trying to establish the most effective first line of therapy. It’s not a bad idea to continue the folic acid if targeted Or immunotherapy is administered, but be sure to have B vitamin levels checked regularly once or twice a year (typically this isn’t routinely done). If the levels are too low, fatigue is an issue but if the levels are too high, there can be serious side effects like neuropathy. Sounds like it’s all going to plan. What you may consider a second opinion if there is a targeted mutation with a doctor that has expertise. For now, one step at a time.
    4 points
  32. LouT

    My heart is breaking...

    Gary, So sorry to hear about your Aunt. As a survivor of lung cancer (diagnosed two years ago) and member of this board for the past two years I can tell you that your feelings are perfectly normal and expected. I can also tell you that lung cancer (LC) is not the death sentence it once was and there are many here living years past their diagnosis. There are have been more advances in the treatment of LC in the past 5 years than the previous 50. I will give you a few words of advice though; do NOT search Dr. Google. The stats that are posted are five-year averages and do not properly represent the survival and outcomes that are being experienced today. Also, have your Aunt keep a journal so that she can write down questions and keep them to share with her medical team or with us here. You too...ask all the questions you want and you'll find great support here based on people's personal experience. There is also a forum I believe you should look into, it's called "Caregivers Resource Center" and can be found here. In addition, you and/or your Aunt should take a look at the "10 Steps to Surviving Lung Cancer by a Survivor" which can be found at this site. You'll find a load of support here by super people Lou
    4 points
  33. Hello Karen Michelle here. Like some of the others, I’ve invested quite a large sum of money in integrative medicine. The diet recommended to me was Andrew Weill MD’s anti inflammatory diet. This includes fruits, vegetables, whole grains, fish, and a few others. Juicing is not recommended as there is too much fiber lost from the whole food to support a diverse microbiome. There’s increasing evidence that a healthy microbiome does help to improve lung cancer outcomes. I diffuse organic essential oils for one hour at bed time- a combo of lavender Frankincense & orange. I’ve been doing weekly acupuncture to address the side effects of my targeted therapy as well. I try and walk every day, and have taken up Qi Gong/Tai Chi to help improve my lung functioning. It’s been almost three years for me now and so far I’m blessed to be doing well.
    4 points
  34. LexieCat

    Vegan/Raw Diet?

    "Alternative" therapies imply something that is used in place of treatments approved by medical science. Some people integrate other kinds of treatments/therapies into their regular cancer treatment. Anything involving supplements should definitely be run by your oncologist--some actually work against cancer treatment. For instance, my oncologist told me to cut out fish oil and Vitamin C (which is suspected to enhance tumor growth). As far as vegan/vegetarian diets go, whatever you like, but I wouldn't count on its doing anything to fight cancer. Eat healthy, be sure you are getting enough calories, and you should be good in the diet department.
    4 points
  35. LouT

    Vegan/Raw Diet?

    Hi Karen, I don't believe there is any evidence that being vegan or vegetarian will help to reduce or eliminate tumors. Of course a healthy diet is important when your body is fighting off any disease or even the side effects of chemotherapy, but most times doctors will be focused on keeping your calories up to a level where your body has the proper energy to fight and where your weight is maintained. Michelle, one of our members, is into a very healthy diet and I have no doubt that she will chime in on this topic. Lou
    4 points
  36. DMiller

    New to cancer.

    Hi all- I’m Diane. I was dx Jan 2021 with NSCLC EGFR Exon 21. Mets to spine, sacrum, femur, hips, adrenal gland, lymph node, liver, and 1 brain met. I was blindsided as most are I suppose. It was a rough 5 months coming to terms with this. I’m learning about this nasty disease which I find to be terrifying most days, however, I’m starting to have more hopeful days. Reading this forum silently over these months has be tremendously helpful. Thank you all you wonderful warriors.
    4 points
  37. D iane

    Small Cell Diagnosis

    Bumping this up as I just re-read this whole thread. Coming up on a year, things are so different. We are doing fairly well with adjusting. I did start on a low dose anti-depressant after 9 months of thinking I could do it without. It is a help. We miss him. I still stop in from time to time and post if I feel it will be a contribution to the conversation, and maybe it will help someone. The SCLC section is not very active, and we all know why. It is a bit encouraging that there are some new studies (like identifying sub types) underway. It is such an aggressive disease. https://medicalxpress.com/news/2021-04-genomic-treatment-approaches-advanced-small-cell.html#:~:text=A%20new%20study%20of%20advanced%20small-cell%20lung%20cancer,linked%20to%20patients%20developing%20resistance%20to%20certain%20therapies. https://www.eurekalert.org/pub_releases/2021-01/uotm-sds012121.php Take care everyone, I thank you for all your support.
    4 points
  38. DAC

    Hello

    Good Day, My name is Delia, I am 69 for next 5 days. I'm married to a very kind man, we are each other's caretakers. I am a mother, a grandmother and a great grandmother. I retired from a career in Engineering and started a new career as a graphic and web designer at the age of 60. At 65 I taught myself to play to cello and my music is my prayer. I also enjoy gardening, reading and laughing at my own bad jokes. I joined this forum because sometimes I feel the need of a safe place to communicate what my mind and body are going through. It is difficult for me to communicate how cancer affects me to my loved ones, they either feel the need to fix things or they get frightened.. I know their reaction is out of love, but I want to be more to them than a cancer patient. Also hopefully I will be able to help another who is going through cancer treatment. In September I was diagnosed with Stage 3 NSCLC. I underwent 14 weeks of weekly chemo and daily radiation treatments. I am currently in a clinical study receiving the immunotherapy drug - Imfinzi once a month for the next year. The drug has thrown my thyroid a bit out of wrack and given me an itchy rash. I am fortunate because I did not have any other health issues. I have doctors who I both like and trust. They have been very encouraging, and are generous with their time. - I heard the words - "we caught this in time we have it contained" and everything is getting smaller. Most of the time I have more energy now than I did before I started my treatments. Thank you for reading my introduction. Best Regards,
    4 points
  39. TJM

    Hello

    I can play the radio!
    4 points
  40. LexieCat

    A Little About Me

    Hi, jen, and welcome. I'm from Colorado originally (Colorado Springs) but have been in NJ since 1981--still have a lot of family there in the Springs and Denver metro area. I generally get out there to visit at Christmas (except for this past one, of course). Sorry you're having to deal with this, but I'd advise ignoring any kind of "median life expectancy." There are people here 15-20 years out from an advanced cancer diagnosis and with all the new treatments coming out all the time, it's more and more possible for many lung cancers to be treated as any other chronic disease. I started off with a Stage Ib diagnosis four years ago, when I had a lobectomy. Last summer, almost exactly three years later, it recurred in my other lung and I'm now Stage IV. Originally I had one met to the sacrum. After a course of chemo and immunotherapy (I have no targetable mutations), to which I had an initially great response, the cancer started to progress and I'm now starting a clinical trial for a customized immunotherapy (TIL therapy). I've had two of the chemo drugs you're getting (carboplatin and Alimta), but I'm not that familiar with the third (Avastin)--there are probably others here who have had it. I didn't find the chemo to be that rough, but everyone reacts to it differently. If you haven't got one already, I highly recommend a port--your veins will thank you. Glad you found us--this is a great place for information and support.
    4 points
  41. Susan Cornett

    Introduction

    Hello and welcome. I'm going to tell you what you already know - your oncologist is a jerk. You should be able to have frank conversations with him/her. You should also have an oncologist who isn't threatened by you seeking a second opinion. I hope that you are able to resolve this soon. It's added stress that you don't need right now. Keep us posted.
    4 points
  42. Sandy N

    Lung cancer returned

    Seems like with lung cancer (and many other cancers as well), you're never just "one and done". I was diagnosed in November 2019 at stage 3A. Treatment (chemo and radiation) worked and my chest has remained fine since then. I enjoyed a lovely spring and summer of NED but then a scan in late fall revealed that it had progressed to both adrenal glands. I've been on a couple different treatments since (this one I'm on now is kicking my butt!). You are definitely not alone nor will we let you deal with it alone. Most of us have either been there done that and/or currently dealing with it. There are so many tools in the toolbox to deal with this stuff so hang in there! Don't lose hope because you are in the company of some diehard hopers!
    4 points
  43. Roz

    Lung cancer returned

    Hi Iris, Unfortunately, it seems like recurrence often occurs with lung cancer. I'm hoping you get some treatment options that work! Best, Ro
    4 points
  44. Deb W

    Lung cancer returned

    Hi Iris, I am so sorry to hear of your recurrence. I have an understanding of how you might be feeling. Did they tell you the stage and is there a treatment plan in place? I was diagnosed with 1B in March 2019. I had a lobectomy and all margins were clear so no chemo or radiation after surgery. I had a recurrence April 2020 - diagnosed with Stage IV. It turned out that I had a mutation MET Exon 14 Skipping but it wasn't known until I had already received chemo and Immunotherapy. In March of this year after 3 NED scans, it came back again. I tried the Targeted therapy drug and had an allergic reaction after 10 days. I had a CT scan and it showed that the drug worked, but I can't take it. I feel good, but anxiously awaiting the treatment plan. There are so many advancements in lung cancer treatment. We will be here to support you in any way we can. Deb
    4 points
  45. Hi Carrie, everyone reacts the same as you have when they get a lung cancer diagnosis. When I started out at Stage IIIB in October 2019, I had a 6 cm mass in my left lung with spread to lymph nodes. My PCP called me in to her office at 5 pm on a Friday, so I knew the news was not going to be good. I was not a candidate for surgery. It's natural to be anxious at these beginning stages, especially when you have 2 differing opinions. Don't hesitate to go for a third. Whether you have surgery or a bronchoscopy, you should request biomarker testing to determine whether there is a genetic mutation in the cells. Several types of mutation (like the one I have) can be managed as a chronic illness and treated with a daily pill. This site is a valuable resource and there are many stories of perseverance and survival. I'm certainly one of those, being NED (No Evidence of Disease) today, 14 months after the start of treatment (chemo, radiation and targeted therapy). Once you have a treatment plan, whether surgery or not, and start moving forward, you'll feel like you're making progress. My best advice is to take one day at a time and stay away from Dr. Google. The GO2 Foundation is also a good resource. Come back here and ask questions. Hang in there, we're all on the same ride.
    4 points
  46. Oh yeah, this is such a new concept that even the physical therapists don’t really know about it. My “pandemic present” from my doctor is a course of prehab to help regain lost strength & flexibility as a result of being at home for over a year. My last scans looked good so doc wrote the order only to have the PT team say I was rejected from their program because of my lung cancer! I had a total fit & sicked my doctor on them. Now first appointment is June 1st. Will let you know how it goes!
    4 points
  47. Tom Galli

    Hello from IL

    Jim, Okay, I understand. A tumor in or around the trachea is a difficult presentation. Now I understand her 5-day radiation course. It was likely precision (pin point) radiation. Also clear why she requires a tracheotomy. The trachea is sensitive tissue and a radiation inflamed tumor might cause pressure around her trachea that leads to difficulty breathing. Because of its sensitivity, she'll likely not have further radiation. But, she might benefit from chemotherapy. Has she had a consultation with a medical oncologist? Chemotherapy for NSCLC adenocarcinoma comes in 3 flavors: conventional chemotherapy (a doublet like Taxol and Carboplatin), Targeted Treatment (specialized treatment that attracts tumors that display certain tumor markers) and immunotherapy. She may start on conventional chemotherapy to gain immediate relief and knock the tumor back, then move to Targeted Treatment and or immunotherapy depending on the laboratory analysis of her biopsy. Or, she may be prescribed a combination of conventional and or Targeted Treatment or immunotherapy. Chemotherapy is prescribed by a medical oncologist, thus my question on her consultation. More questions, ask away. We'll help you out. Stay the course. Tom
    4 points
  48. JimsMNL

    Hello from IL--- Part 2

    She got the first round yesterday. It went well she said, other than they had to slow it down a bit because of it burning. She gets a port before the next round. She is feeling fine so far. I hope that continues. Not much else to report at this time.. I hope you all are doing the best you can.
    3 points
  49. I’m still trying to find my way around this forum. I don’t know how to respond to my replies individually, so I’m going to respond to both of you (Lexiecat and Judy M2). Thank you so much for taking the time to respond. I really appreciate the information and encouragement. My mass is in my left lower lobe. Initially there was some discussion of a needle biopsy or a bronchoscope biopsy). My mass is positioned near the wall of my lung, right between two ribs. The needle biopsy seemed to be the appropriate route, however there seemed to be some concern that they wouldn’t be able to obtain a sufficient sample. The oncologist consulted a surgeon and he suggested a wedge biopsy. They felt it was the best way to obtain a biopsy and perform curative surgery at the same time. If the mass is not found to be malignant, they’d close me up after just the wedge resection. If malignant, the surgeon would do a segmentectomy. This opinion comes from a surgeon at Inspira, in NJ. I’m going for a second opinion at the University of Pennsylvania this Wednesday. I met with his PA two weeks ago (she felt strongly that it was scar tissue from an old pneumonia) and scheduled a repeat CT scan in 4 weeks. We’re hoping the mass will be smaller... if not, they would also recommend a wedge resection. She said that at Penn, they do a lobectomy (rather than a segmentectomy) if cancer is found. The Inspira surgeon said that he hasn’t seen improved outcome with lobectomy vs segemtectomy. He also said that in all cases where he’s removed the mass while at stage 1, he hasn’t had any recurrence ! Depending on size, they do a short course of chemotherapy post op. Lexiecat, I live in Franklin Twp (Newfield) NJ. (Gloucester county). We’re practically neighbors. Thank you for your information about the VATS surgery - I was expecting a more painful post op course than you’ve described, so that’s encouraging. Judy M2, my doc talked to me about the biomarkers and mutations that can be utilized to treat cancer. Your experience with immunotherapy is very encouraging ! I’m very happy for you - for both of you. I will keep both of you in my prayers. I pray that I get lucky and my mass shrinks. If this turns out to be cancer, my greatest concern is for my son. He’s 25, so clearly an adult, lol. He’s currently living in CA, attending graduate school at UC Irvine, pursuing his PhD in physics. I haven’t told him about the mass, because I’m still hoping it will turn out to be an infection or inflammation. Why have him worry about the possibility of cancer when I don’t have my answer yet ? He’ll be home for a visit the week after my repeat CT scan. If surgery becomes necessary, I’ll be able to discuss it with him then. My doctor thinks I should give him some information before he comes home - that he’ll be blindsided otherwise ... but I as far as I’m concerned, there’s no definitive information to tell him at this point. I’m really concerned that his concern for me could derail everything he’s worked so hard for. What do you folks think ? I apologize to all for the long post. I promise not to make it a habit ! ❤️
    3 points
  50. LouT

    New here

    Sarah, I'm sorry to hear about your father's diagnosis, but glad that you found our forum. Tom is a great example of what you will find here; a large group of people who share their experiences with Lung Cancer from diagnosis through treatment and beyond. So relax, read Tom's recommendation along with some of the posts in our forums and you'll soon find that this is a great place to get shared experiences and support. You can also take a look at Lung Cancer 101 and it can be found here. Lou
    3 points
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