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  1. Hi there, Want to drop a brief welcome to let you know I’ve been taking Alectinib for a little more than three years, now No Evidence of Disease. The biggest challenge is weight gain and chronic fatigue. The most important thing to understand with Alectinib is that dose changes are normal, lower doses does not mean less effective. It must be taken with a high fat meal- very important for absorption, managing constipation or nausea. Avocados, nuts, and seeds work best. Remember your Mom will be playing a long game, it’s a marathon not a sprint. There are two ALK Facebook pages, ALK Positive and ALKies Unlimited. I’d also recommend looking at the website: www.alkpositive.org for information as well as the monthly activity calendar. Hopefully your Mom will respond quickly. My cough resolved immediately after just one dose. I did have one dose reduction due to elevated liver enzymes. So far so good.
    4 points
  2. BetsyB22

    Introducing myself

    LouT and BridgetO - You guys are the best! Thank you so much for your replies! It is so helpful to know that you've been through this and it was do-able. It's also so reassuring to hear that you've both had other cancers. The fact that you've come through so much gives me a lot of hope. Thank you!! Also - LouT - your surgery tips are awesome. I am going to print them out. I especially appreciated the tip on the wedge pillow. Sleep is everything when it comes to healing, and I never would have thought of that. When I had my mastectomy, I rented a recliner for a month - needed to be sleeping in something that would prevent me from rolling over in my sleep (I'm a stomach sleeper). The wedge sounds much easier to arrange and I'll definitely try it. Big thanks to you both!
    4 points
  3. Judy M2

    Hello there!!!

    LeeLee, methadone and a Fentanyl patch were prescribed (separately, not together) for my esophagitis pain after radiation and both worked very well. A palliative care specialist can determine how best to make you comfortable. Your primary doctor can't prescribe painkillers like methadone or Fentanyl patch. There is a newly approved targeted therapy for the KRAS mutations, so ask your oncologist about that. Hope you get some healing and relief soon.
    4 points
  4. My oncologist said I could go ahead and try an antihistamine as an adjunct to my immunotherapy (Tecentriq)--she just emailed me that drugs in the class mentioned included Zyrtec, Claratin, and Allegra. This article, which discusses the MD Anderson article, also mentions those three. https://www.genengnews.com/news/2nd-gen-antihistamine-drugs-may-improve-outcomes-for-cancer-patients-receiving-immunotherapy/ Just a reminder to anyone on the Forums--be sure your oncologist knows about (and approves) any medications you are taking--including OTC meds like these.
    3 points
  5. Greetings! I was diagnosed with Stage 3A NSCLC in March 2021, with a 4.5 cm irregular right middle lobe mass; 2.1 cm subcarinal nodule, 1.5 cm right hilar nodule and 1.3 right infrahilar nodule. Sadly, the location of the tumor and the involvement of the lymph nodes meant this big mess was non-resectable. I started chemo-radiation on April Fool's Day (appropriate, right?). I had 30+ radiation treatments and concurrent chemo (carboplatin & paclitaxol). So far, the tumor seems to have been blown to smithereens and the lymph nodes look like they are slowly turning into shapeless blobs. Radiologist & pulmonologist practically dance with glee when they look at the scans. The bad news is that the standard of treatment (based on the PACIFIC study) calls for consolidation therapy with Durvalumab, ideally twice a month for a year. I made it through four sessions when I developed pneumonitis. After several weeks of high-dose prednisone, we re-challenged with the "durva" as my oncologist calls it. I developed really bad pneumonitis -- "life-threatening" as my pulmonologist likes to remind me-- and went onto massive doses of prednisone. Somewhere in there, a pulmonary embolism appeared. I didn't have to be hospitalized, thank goodness, but I did get lots of new medicines. (As I tell the pharmacist, somebody has to pay for all the fancy training he got for his new pharmacy puppy, an anti-anxiety support dog for vaccine phobic folks.) Plus a spiffy new medical alert bracelet due to one of the new medicines. I'm now tapering down on the steroids and hope to be off them by 12/29, unless something exciting happens, e.g., a recurrence of pneumonitis, which the pulmonologist doesn't anticipate (fingers triple crossed). Meanwhile, I have my first "active surveillance" scans on 12/14. The CTA the pulmonologist did to diagnose the PE (pulmonary embolism) also showed a little nodule that was never mentioned before. The radiologist, whom I worship, has pulled up all the scans prior to that to see if she could see any sign of a nodule but she doesn't think she can. She says if it's cancer, it will "announce itself." How? "By growing." Right now, I'm friggin' fat-- thank you prednisone-since-July-- and, as the Brits say, knackered, as the prednisone drops and my adrenal glands have to get back to work. I'm working on increasing my cardio fitness-- that's going to be a long road, and am doing some weights (don't be impressed-- they say, "use 15-20 pound weights" and I feel like a bigshot because I'm using 5 lb. ones. Even then, I end up pausing the video and panting several times a workout. But I'm getting stronger.) So, I'm planning to live the next couple of weeks as though I've never heard the word cancer. Then we'll see what the scans show. I hate having lung cancer. Oh, well.... Thanks for listening!
    3 points
  6. Hi Karen, I'm sorry you've been through so much difficulty. Everyone reacts differently to immunotherapy and targeted therapy drugs like I take, and you never know what will happen until you try. I'm a little like you: diagnosed 2 years ago with Stage 3b, not a candidate for surgery, and I underwent your same chemoradiation regimen. I had severe esophagitis from radiation and couldn't eat or drink. For whatever reason, a month after treatments ended, I developed a perforated sigmoid colon and sepsis infection and needed life-saving emergency surgery on Valentines Day 2020. I was hospitalized for 10 days and in a rehab facility for 10 days--luckily just before Covid hit. My recovery was long and painful. My esophagitis finally healed after 5 months or so. A month after my surgery, I started targeted therapy for my EGFR Exon 19 mutation. I have only minimal side effects from this drug, thankfully. Anyway, it took a little over a year for me to reach NED status (as of April 2021). I believe that chemoradiation destroyed the cancer and my targeted therapy is just maintenance. I did have pneumonitis from radiation but it wasn't treated--it was nowhere near like yours. All the suffering was worth it. I feel good today and live a normal life. Good for you doing your best to exercise. I think it's important to exercise our lungs. I also have a stable 5/6 mm nodule in my upper right lung that is being watched. It hasn't changed in 2 years, so I don't worry about it. You should know that the majority of nodules are not cancerous. I am very impressed that your pharmacist has a support dog. I'd go there just to visit. Having lung cancer isn't ideal, but treatments have come a long way and are still in development. Somehow we have to come to terms with the beast. I recently bought a bracelet that says "It came. We fought. I won." It gives me strength whenever I look at it. Best of luck to you!
    3 points
  7. LouT

    Introducing myself

    Betsy, I'm another survivor of more than one cancer. In 2010 I was diagnosed with colon cancer and after a resection was considered cancer-free. Then in 2019 a nodule was discovered in my right lung and had to have a lobectomy to removed it. From then until now all of my scans have been NED (No Evidence of Disease). So there is hope for you as well. I wrote a post on some "Thoracic Surgery Tips and Tricks" and it can be found here. It can help you to get through some of the foibles of lung surgery. Stay strong and know there is hope for you. Lou
    3 points
  8. BridgetO

    Introducing myself

    Hi Betsy and welcome here. I'm a survivor of 3 different primary cancers. First I had breast cancer, Stage 1a, estrogen and progesterone receptor postiive, HER2 negative. I had a lumpectomy and radiation, nothing as painful or difficult as you went through with your breast cancer, Then I had a rare and aggressive form of cervical/endometrial cancer, Stage 3, grade 3. I had a radical hysterectomy, concurrent chemo and radiation and additional chemo. That surgical recovery was painful and I had a lot of side effects of treatment, some of which were long term or permanent. Compared to that surgery, my laparoscopic lower right lobectomy, with removal of 27 mediastinal lymph nodes, was a piece of cake! Well, maybe not a piece of cake really, but fairly easy. I was released from the hospital the following day with a chest tube in place because I had an air leak. Both the quick discharge and the discharge with the chest tube are pretty unusual. It's more typical for people to be in the hospital for two or three days. When air leaks occur, patients are most often kept in the hospital a few extra days until it resolves. I was glad to recover at home, though. I was out and walking around the neighborhood in a few days, with my drain tube and bag hidden under a big raincoat. I did have some pain from the drain tube, which caused stabbing sensations when I moved in certain ways. I fairly quickly learned not to move in those ways! I had oxycodone, which made the pain tolerable. Once the tube was out (10 days in my case) I had very little pain, which was controlled with OTC meds, My experience of having pain from a chest drain tube and little pain after it was removed is fairly typical for those having laparoscopic or robotic lobectomy. Thoracotomy (open surgery) is less often used and is more painful with a longer recovery. Unless your situation is really unusual, your pain and recovery time will be nothing like what you had with your double mastectomy. I''ve written a lot here, so I'm going to leave it to other forum members to respond to your other questions. Keep posting with any additional questions you may have and let us know how we can support you. That's what we're here for. Bridget O
    3 points
  9. LouT

    Hello there!!!

    LeeLee, Sorry to hear about the pain. I also had LRLobe removed and the first week or so can be pretty tough. If you are unable to take Ibuprofen please ask your doctor about Tramadol w/Acetaminophen it may provide some added relief for you. Tramadol is an opioid, but not as heavy as Oxy or Hydrocodone. The pleurisy can really be uncomfortable. I have not experienced it but my family member has and it was very uncomfortable and distressing. So, your team has decided that they got good margins and didn't find any mets so they will do scans to check on your progress. Welcome to that club. I had my lobectomy in March of 2019 and had my last semi-annual scan in August. At this point I'm on an annual scan schedule. In your case you'll be having them more frequently and the rate will be adjusted as you continue to test negative after your second year. My only advice with the coughing caused by the pleurisy is to use your spirometer as often as you can. It can help you to be able to take deeper breaths. Please stay in touch and keep us updated. Lou
    3 points
  10. Lizzy, I started chemo and radiation 2 years ago on Dec. 3. The mass in my lower left lung was also 6 cm. Today, 2 years later, I'm grateful to be NED. So I understand everything you're going through! It might help you to create a Caring Bridge site so you can give the people you invite updates whenever you want. This way you don't have to tell your story over and over, and it may give people permission to talk about non-cancer subjects when they see you. It takes a little time to set up (gathering email addresses) but afterwards it's simple to update and maintain. In time, I hope your condition becomes one that people can see past your cancer. Today only people who I don't see regularly ask how I'm doing, and that's more a function of politeness. They and I have moved on to my pre-diagnosis life. Best of luck with treatments and I'm looking forward to the results of your biomarker testing.
    3 points
  11. There is also a theory that loratadine (Claritin) may improve efficacy of Tagrisso. I take it every day anyway for nasal allergies/post-nasal drip caused by Tagrisso.
    3 points
  12. Jack, Good show posting this paper. It might be very helpful going forward. Stay the course. Tom
    3 points
  13. Just got message from my oncologist, who found the article very interesting. She wasn't sure yet how to translate that into clinical practice, but she said we'd talk about it next week.
    3 points
  14. Thanks very much, Jack! I passed the link to my oncologist to discuss next week. I found it especially interesting since a lot of my coughing seems related to sinus/nasal mucus--I'm blowing my nose a lot. The steroids do seem to be helping with the cough and SoB. Anyway, if antihistamines also helped with the immunotherapy (I know steroids work against it), it seems like it might be worth a try.
    3 points
  15. No maintenance so far. I did Chemo and radiation which shrunk the main tumor and lymph nodes. Originally I was told that the cancer had spread and I wasn’t a candidate for surgery. I ended up having such good results that I was able to have an open lobectomy. The surgeon removed upper left lobe and lymph nodes that had been cancerous. That was Oct 2018. I’ve had regular my CT scans and thanks to god and science I’ve been NED.
    3 points
  16. I saw my oncologist and she was impressed with the study. She told me that she had attended a conference at MD Anderson and had a lot of respect for them, She also said that Claritin 20 mg day would be a good one to try. Zyrtec was also mentioned. I asked her about trying the pediatric dose because of my kidney disease and bph. She advised me to take the adult dose and stop if I had any issues. I took my first dose earlier today and so far so good.
    2 points
  17. Karen_L

    Justin

    Hi Justin, I'm so sorry you are in such pain. I completely understand not wanting to go to the hospital, but I just wanted to share that when my doctors wanted me to go to the Emergency Room at the hospital, I didn't go and I now realize it was a pretty dumb move on my part (and that's an understatement.) Whether you go or not, I hope you find a way to get some relief. Karen
    2 points
  18. Karen_L

    Introducing myself

    Betsy, Glad you had such astute doctors. I was glad to have had genomic testing for biomarkers of tumors. I hope your docs will be seeking that for yours. Karen
    2 points
  19. You've been hit by a lot, all at once. I can hear how shocking it's been for you. Even though I am almost through with all my treatment and after-effects, I am only now beginning to process the whole thing. It is surprising how deep my feelings run about it all. All along, I've needed to take time to remember to breathe deeply (before falling into an inadvertent nap) and that is standing me in good stead at this point. I've also started meditating. I hope the neurosurgeon had good things to say. Best, Karen
    2 points
  20. LexieCat

    I/Os for PDL1/-1

    I just talked with my oncologist about my next immunotherapy. I had Keytruda as part of the triplet (with Alimta and carboplatin) and had progression after switching to maintenance doses. Then did a clinical trial of TIL therapy (another form of immunotherapy) and after an initially great response, again had progression. On the table today were Opdivo + Yervoy, Keytruda alone, or Tecentriq alone. Even though they are similar, they aren't identical, plus my doc felt it had been long enough since my last Keytruda infusion that it might be worth trying again. Ultimately, we settled on Tecentriq, which targets PDL1 (Keytruda and, I believe, Opdivo target PD1). I think the immune system is a funny thing. All kinds of things affect it and my doctor says sometimes with a break in between, something that didn't work perfectly before might work again. They are still figuring this stuff out. Incidentally, my doc is also gonna prescribe an antihistamine on the "couldn't hurt to try" theory, given the recent research that certain antihistamines can enhance immunotherapy.
    2 points
  21. BetsyB22

    Introducing myself

    Thanks, Bridget! I am so grateful for your help! 🙂
    2 points
  22. Judy, Thanks for your encouraging words. I'm so glad you missed bad pneumonitis. I wouldn't wish it on anyone. But the esophagitis sounds like no picnic either. I have a drawerful of meds in case of esophagitis, which they fully expected me to get due to the nodes and their radiation field. Luckily, very luckily, it never happened. And the colon perforation-- wow, you went through the mill. What TKI are you on? Here's a picture of Hal, the pharmacy dog (clipped from the instagram site of the training school he went to.) He's a total cutie.
    2 points
  23. BridgetO

    Introducing myself

    Hi again, Betsy, Lou's tips and tricks really are awesome! I found the wedge pillow a must. It helps make breathing easier, as well as keeping you on your back.
    2 points
  24. Karen, Welcome here. Your first line treatment was exactly like mine except I had taxol opposed to paclitaxol. And, my first post treatment scan was exactly as you reported: my large tumor was indeed blown to smithereens. Your consolidation therapy--Duva--can be troublesome. Unfortunately pneumonitis is commonly reported and the extent of the condition varies from person to person. We have a pretty extensive body of knowledge on Duva here, if you want to read about others and their experience. I do hope your forthcoming scan shows no nodule growth or any other problem for that matter. Stay the course. Tom
    2 points
  25. Welcome to our forum and I'm sorry to hear about your Mom. There are others here who have experience with mutations and I'm sure you'll be hearing from them soon. In the meantime we do have a forum dedicated to "ALK Mutations" and it can be found here. Good luck to you and your Mom and you'll be hearing from others soon. Lou
    2 points
  26. Hi again Mark, LexieCat is right, as usual! TJM (Tom) has/had neuroendocrine, and G.A.M. (Glenn) . I've private messaged both of them to see if they'd pop on here.
    2 points
  27. Thank you Judy, that’s valuable information. I’m getting some of those things together now for my first session tomorrow.
    2 points
  28. Mark, two years ago I was diagnosed with Stage IIIB garden variety NSC adenocarcinoma with spread to my lymph nodes. I had 6x weekly chemo (carboplatin/taxol) and 30x chest radiation. My chemo drugs were different from yours. Some people getting chemo have fatigue as a side effect, some have nausea. My biggest side effect was hair loss and constipation. I don't recall being nauseous as a side effect. Radiation gave me fatigue and esophagitis (because of the location of the lymph nodes being treated). Your white blood cell counts may drop during chemo, but they will draw labs at the start of each infusion day. I hope your oncologist has scheduled a "chemo teach" session for you, where you can ask whatever questions you want. I also hope you are getting a port implanted to save your veins. A port can usually be used the same day it's implanted. Chemo infusions are boring, so bring something to read and water/snacks, listen to music and take a nice nap when the Benadryl hits. And don't forget a blanket! I actually felt my best on chemo infusion days. We used to stop at Wendy's on the way home from chemo as a reward. I don't have experience with immunotherapy, I'm on a targeted therapy for my particular gene mutation. All of my side effects from chemo and radiation were temporary, and aside from skin rashes common with my targeted therapy, I am NED (No Evidence of Disease), doing well today and living a normal life. Best of luck, and I hope any side effects are minimal.
    2 points
  29. Monkey, I'm very sorry for your loss. It sounds like she took a turn suddenly and you had no way of knowing when the end would come. Please don't carry guilt over that. My condolences. I actually don't want my loved ones there when I die. I'd rather they remember me during life, not at the end. Peace to you.
    2 points
  30. Beverly

    Scanziety Builds Character

    Great post Tom! Did I read that correctly? One time-per-year & low-dose CT?? YEA! Beverly
    2 points
  31. Babs

    Justin

    Hi Justin, I had terrible pain when I ate at the end of my radiation. I used Magic Mouthwash and it helped long enough for me to eat a meal. It’s a prescription that I would drink before a meal. Lidocaine and a couple other things. Not sure if they have it over there but it’s worth a shot. Good luck Babs
    2 points
  32. I’m so sorry for your loss, Monkey, and that you weren’t able to be with her as she died. My mother also died when I wasn’t at her bedside. Had I known that that night would be her last, I would have. I’ve had some guilt about it but I know that she is not disappointed in me now. Love to you.
    2 points
  33. It sounds encouraging to me. Could explain why some folks fail to see NED or at least a positive response. I have had 27 Keytruda infusions and seen “ no progression” but no NED or shrinkage. After reading this, I think that my chronic inflammation in my abdomen as well as chronic sinusitis, might be creating histamine and interfering with the immunotherapy. Does that make sense?
    2 points
  34. Kli, I’m not sure I can answer how stent location affects things. I would hazard a guess that it would need to be positioned so it doesn’t cause a persistent gag reflex. I bet an Ear, Nose and Throat doc is or should be consulting on the procedure. My stent stayed in for about 4 months. My surgeon told me that was about the limit of a trachea stent because tissue started to grow into the stent weave. I sure fell better after its removal. Your mom’s doctor will have a better answer. Stay the course. Tom
    2 points
  35. Lizzy, Walter Reed—The Army Medical Center? In my active duty tenure, I spent more time than I care to remember at WRAMC. Since then, I think they closed the Army hospital in DC and rebadged the Navy hospital in Bethesda as Walter Reed. Either way, you are in good hands Stay the course. Tom
    2 points
  36. Carboplatin · Paclitaxel (Taxol) Cocktail
    2 points
  37. Justin1970

    Justin

    Hi and thank you for the replies,I have been given some antacid and anesthetic medicines but it's not really sorting the pain out, I only have 3 more radiotherapy treatments left so hopefully it will get better soon, the oncology team have said the cancer is shrinking already and that they are really pleased with the outcome so far, I finish the chemotherapy on the 24th December so hoping for a better new year lol, Kind regards Justin
    2 points
  38. https://medicalxpress.com/news/2021-11-antihistamines-immunotherapy-response-cell.html
    2 points
  39. Happy thanksgiving!
    2 points
  40. LexieCat

    Hello

    I totally LOVED my surgeon who did my lobectomy and asked if I could have him do the followup monitoring. He said, well, I COULD do that, but if there is a recurrence, you would be looking at chemo or other drug treatment, not surgery. That made sense to me--and it helps to establish the relationship before you need chemo or drug therapy. Just my two cents.
    2 points
  41. Tom Galli

    Scanziety Builds Character

    My CT was on August 30th but I needed to wait till today to get the results—from a new medical oncologist. He’s my kind of guy achieving undergraduate and graduate degrees in engineering before going to med school. We talked a bit on how things have improved since the dark ages of my diagnosis. I told him of my rabid scanziety driven by a 12-day dwell from test to results. He told me I’d not receive the same treatment if I was diagnosed today. I told him I was happy I was not being diagnosed today, or was I? I find inspiration when encountering stirring words while reading. An article about Joshua Chamberlain, a professor of languages and rhetoric at Maine’s Bowdoin College, told of his exploits as the country slipped into the Civil War. Chamberlain knew nothing about soldiering when Maine stood up its first regiment and declined the governor’s offer to command claiming insufficiency. But, he joined the cause as a lower ranking officer to learn how to soldier. He learned well. His leadership and commandership at the battle at Little Round Top during the second day of Gettysburg is still studied by current-day Army officers. For his courage, skill and character in that battle, he was awarded the Medal of Honor. On dedicating a memorial to Maine soldiers at Gettysburg, 25 years after the battle, Chamberlain asserted “it is character that tells.” Similarly, the tell in surviving lung cancer is character. Chamberlain said: “What I mean by character is a firm and seasoned substance of soul. I mean such qualities or acquirements as intelligence, thoughtfulness, conscientiousness, right-mindedness, patience, fortitude, long-suffering and unconquerable resolve.” A “firm and seasoned substance of the soul” that results in “unconquerable resolve” to survive. That essence is built day-by-day as we endure treatments, sometimes cycles of treatment, sometimes cycles-upon-cycles all with uncertain outcome. What was my scan outcome, you ask? All the typical magic nodules waxing and waning from scan-to-scan showed up. He laughed about me charting their location by spreadsheet. And we had the hypo-dense vs. hyper-dense liver lesion discussion, and a remark about that kidney stone that has been hanging around for 10 years. Then he told me he was reducing my oncology appointments to 1 time-per-year and changing up my scan to a low-dose CT chest type without contrast. He said that interval and type of scan is fully appropriate for one cured of lung cancer. I guess scanziety builds character! Stay the course. Tom
    2 points
  42. LexieCat

    Scanziety Builds Character

    LOL, no matter what ever crappy thing happened to me, my mom's go-to response was: "It builds character." Yeah, ticked me off no end.
    2 points
  43. Karen, you're right, esophagitis was awful. Now I'm on Tagrisso and only have minor side effects. OMG, Hal is such a cutie! He looks like my sister's golden doodle. I'm going to send his picture to my friend who had a therapy dog for many years and is now involved with training a service dog for our local service/therapy dog organization.
    1 point
  44. Mares

    What specific mutation?

    Thank you for the link. I will definitely check it out. It’s going to be useful information for both of us. Thank you for suggesting it! ~Mares
    1 point
  45. Judy M2

    Hello there!!!

    Right, your oncologist isn't necessarily the right specialist for pain. That's why a palliative care specialist is the right choice.
    1 point
  46. LeeLee1908

    Hello there!!!

    Hello Lou, Sorry for the late reply I'm still struggling with pain from my incision site. The first few weeks I was doing pretty good with my recovery. My cancer was on my lower right lobe however during surgery my middle lobe was not attached( fissures)to my upper lobe so surgeon removed both middle and lower lobe(Bilobectomy) my incision is about 4-6 inches. But two weeks ago I had to go to the ER Heart Hospital where I had my surgery and was diagnosed with Pleurisy. I’ve been dealing with a chronic cough that may have inflamed my lungs. My incision is still tender. I notice when I take a deep breath or yawned I would get a shooting pain. It’s still hard for me to sleep at night. Tylenol and Gabapentin is not helping and I can’t take ibuprofen. Yes they did biomarker testing. I got the results after my oncologist appointment so we didn’t get a chance to discuss but the results were on my chart and it states KRAS G12V No treatment since stage 1B. Next is a PetScan schedule for next month with a follow up with oncologist. I have an appointment with my primary doctor Tuesday to discuss pain medicine options.
    1 point
  47. Hi Mark and welcome! I had a lower right lobectomy 5 years ago, but my cancer was a "garden variety" adenocarcinoma, stage 1a and I didn't need treatment beyond surgery. I know very little about neuroendocrine, which I think is fairly rare. There was somebody on these forums not to long ago who had it, but I can't remember who it was. I hope they see your headline and pop on here. I wish you all the best and I encourage you to keep posting. Bridget O
    1 point
  48. Mark, Sorry you have to be here, but glad you found us. My treatment was a lobectomy only so I never had chemo, but others here have and no doubt you'll be hearing from them soon. In the meantime take a look at a blog written by one of our Senior Members entitled, "10 Steps to Surviving Lung Cancer; by a Survivor" it can be found here. It contains great information that I personally found very helpful. You are correct that chemo can affect so many differently. Some folks here seem to tolerate it very well and others may suffer more serious side-effects. But one thing I've learned from reading their posts is that you should get "Palliative Care" you can speak to your physician about it. It can be very helpful to keep you as comfortable as possible while going through the adjuvant treatment you describe. Stay in touch here and ask any questions you may have. You'll soon be hearing from the rest of our Lungevity Family. Lou
    1 point
  49. Here I am: A happily married father of 2 kids (4 yo boy and 5 yo girl) in my mid 30ies. Perfect life, wife & career type of guy. Non-smoker, fitter than most people in my age group. Introducing myself to the club no one ever wanted to join. It all started 8 weeks ago: after a 15mile run on the weekend, a cough appeared. And never left. Exercise astma? Bronchitis? Pneumonia? Tuberculosis? I wish... Diagnosis: Stage IV adenocarcinoma (7x8x9cm), with metastasis to brain, bone, pleura and potentially liver. Totally out of nowhere. Even in retrospect, no prior warning signs. No lifestyle indications. Zero cancer cases in my family. Bad luck in the lottery of life. I'm now eagerly awaiting therapy to start. Likely a combo of Tagrisso (Osi) + Radio for the bone metastases. The small silver lining after all the bad news: I'm EGFR positive with an exotic mutation (Exon 25 rearrangement), and have PD-L1>50%. My mood is upbeat. I'm not in denial. Quite the opposite: I've ignored all the great advice to ignore Dr Google and read every single paper I could find on NSCLC and EGFR+. Conclusion: If I could, I'd obviously take that Tuberculosis back docs initially suspected. But since this ain't an option, I decided to feel lucky it's 2021. We're not at the cure yet. But long-term survival is a realistic outcome. I'm discovering amazing support networks like this forum. Even if I can't control the outcome, I will make damn sure I that show up in my best physical and mental state. Obviously there are lows. I randomly cracked up in tears whilst playing with my kids on the playground today (wrong thoughts at the wrong moment... god bless my Covid-masks I could hide behind...). I feel guilt towards my wife: the extra weight she has to pull, the dreams she won't be able to pursue whilst we take up this fight. Struggle with the sudden loss of control over my life. Struggle how to communicate about it - privately, as well as a in business context. Stories of fellow patients & survivors slowly help me put things into perspective. And give me confidence that there is a life after the diagnosis. Which is why I'm looking forward to join & make my own contribution as I engage on this journey...
    1 point
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