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  2. Thanks BridgetO. I will just take the time I need and hopefully will start to feel better soon. I now know that it is a slow process!
  3. Today
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  5. Michele


    I can't sleep ; its 1:am and I should be sleeping! Its almost like I'm afraid to fall asleep I feel like I'm waiting for something bad to happen. He looks pale when he sleeps freiks me out!! The feeling is awful watching your loved one deteriate in front of your eyes! I look away and I forget until reality sets in .well that's all I'll try to sleep now have a busy day today.
  6. Hi my husband immunatherapy stopped working so they put him on chemo pill everyday .he had 3 cycles and then it wiped him out with dangerously low white count; phemonia and septis. He was in hospital for 10 days now home with home care which they really suggested hospice or Pallative care. They shocked me with 1 month 3 months if he is lucky 6 months. I'm officially a caregiver now and its not for sissy's. I'm so tired even though I sleep when he does which is a lot. I'm so scared if he doesn't go back on chemo his small cell will take over but chemo will destroy him too. His 2 and half years of being a warrior is not working anymore. Thanks for listening
  7. Hi Cari and welcome. You've had some great advice and info from others here, so I don't have much to add, since I haven't experienced the kind of chemo your dad will be having. I have had chemo for a prior non-lung cancer, cisplatin along with radiation, and then carboplatin and taxoterre. Be sure your dad knows that any fever during chemo should be treated as an emergency. Many chemo drugs cause depletion of neutrophils, a kind of white blood cell that fights off infection. If neutrophils get too low, the body can get overwhelmed with infection in a matter of hours. I had this twice during my chemo-- once my neutrophils were zero. A late night call to the doc about fever sent me to the ER where after tests, I was put on antibiotics and recovered with no ill effects. After subsequent infusions I had injections of neupogen, a drug that helps to prevent this neutrophil crash. Best wishes to your father and to you- support by family is really important. Bridget O
  8. Hi BarbLu and welcome. My situation was similar to yours. My lung cancer (adenocarcinoma 1a) was also found by accident in a routine scan to watch for metastases from a prior cancer. I had a lower right lobectomy by VATS 3 yeas ago. It takes a while to recover- a functioning part of your body has been removed. Be patient with yourself ! Ignore those silly people who think they know how your recovery should be! If pain is restricting your activities or concerning you a lot, you could talk to your doc about it. There are different sources of pain- some people have ongoing pain for a while around their incisions and there may be some remedy for that. Some on these forums use Salonpas pain patches, I think. I haven't had ongoing pain- but as I said, we're all different. I have developed a mild chronic bronchitis and my breathing sounds funny at times, at least to me. So this is my new normal, i think. Hang in there, relax, be kind to yourself. Bridget O
  9. Hi KFrank and welcome. I'm sorry to hear about your diagnosis, but glad you found us. I don't have any experience with Tagrisso or Tarceva, but I know there are members on this forum who have, and I hope they'll respond with their experience. You might post something with a title like " Tagrisso experience, anyone?". Scan time is really stressful for most of us. It's possible, in fact common, for someone (me for example) to be pretty calm and matter of fact and hopeful most of the time and then get blitzed with anxiety when it's time for a scan, and even more anxious and pessimistic while waiting for results. I know that my saying this won't make you any less worried, but at least you'll know that you're not alone. I've had three different primary cancers over the last 11 years, so I've had a lot of scans. I have found that for me it is a little easier now than it used to be. At least I can tell myself that this is "just" scanxiety, that I've been through it before and I'm still alive. I suggest you ask your doctor your "what if" questions. It's perfectly normal to expect to get that kind of information from him/her. Hang in there! Bridget O
  10. I love good news! I completely agrree with Lou's suggestion about a wedge pillow. It made my recovery at home much more comfortable. The chest tube is generally uncomfortable. I was released the day after my VATS lobectomy with a chest tube in place (with an attached one way valve and a bag) because of an ongoing air leak. The tube was in for 10 days and I felt MUCH better once it came out. Best wishes to your husband for a speedy recovery.
  11. Cari, Some lung cancers have mutations or biomarkers such as EGFR, KRAS, and others. You can read about them here: types of lung cancer. Your dad's doctor should have requested a detailed analysis of the cancer to see if any of the markers are present. Treatment options vary based on markers. Not everyone has a mutation or a marker, though. I have just plain adenocarcinoma; nothing fancy here.
  12. Cari, I suggest you check out chemocare.com. It is a site run, in part, by The Cleveland Clinic. It has great information on the chemo drugs - what to expect, how to deal with side effects. We all tolerate chemo differently so keep that in mind.
  13. Susan, Sorry if I duplicated your posts. I wasn’t sure where to reply and what “quote” means on here. He will be starting 4 cycles of Navelbine & Cisplatin combination in November after he has fully recovered from his lobectomy. I’m curious to find out more about this “biomarker” thing. What is it and does it determine something? Thanks Cari
  14. Louise, Thank you so much for you kindness and advice. Cari
  15. Hi Janice, I’m new to the forum and just saw your post. I am about 7 weeks post op. I had a very small nodule in my left lung, had 3/4 of my lobe removed. All lymph nodes that were removed were clean. No further treatment is needed. It was non small cell stage 1a adenocarcinoma and thank God the prognosis looks good. It sounds like you found your nodule early and you should be ok! I’m slowly recovering and getting better each day! Please remain positive! By the way, never smoked!
  16. Curt, thanks very much for responding because I really needed to hear from someone that went through this. Since I look the same, some people can’t believe that I still have pain and am not fully recovered. I almost feel embarrassed or weird based on these reactions. I want to be 100% better but I’m still not there and I was getting concerned that it’s taking a longer time than I expected. It’s good to hear from others that it can take several months. Glad I found this forum! 😀
  17. I was diagnosed with stage four NSCLC EFGR mutation exon 19, in April. There is a large tumor in my upper left lung and cancer cells were in the lining of my pleural sac. I was completely shocked to be told I had lung cancer at 49 years old. I have a wonderful treatment team, I had one round of chemo with keytruda, they chryo froze the cancer cells attached to the plural lining and put in a drain (which stayed in for 3 months), but when the genomic testing came back with the mutation they started me on Tagrisso. The Tagrisso shrunk my tumor in half within the first 2 months, but it also was found to inflame my liver. Unfortunately I had to stop taking Tagrisso, went on steroids to reduce my liver enzyme levels and now I am taking Tarceva. I am so worried that the Tarceva is going to effect my liver the way Tagrisso did. I get rescanned next week and have found myself so stressed out over what will be found, I can barely function. My question is, what if this treatment doesn’t work, or if I can’t take it because it attacks my liver, what next? Any advice on how to manage the stress of this diagnosis and what other treatments people have found is welcome!
  18. Hi @BarbLu. I had a full upper right lobe lobectomy on February 28. Much the same as you. Found by accident. Stage 1A. No follow up treatment after surgery. It took me about three months to get back to full lung function. I still have some numbness and some discomfort around the incision area. It does get better. If you aren’t using it do the spirometer often, walk and exercise as much as possible. You will improve.
  19. Yesterday
  20. Hi BarbLu, Welcome. Happy to hear they caught it so early! I also am a never smoker and surprise! turned out anyone with lungs is at risk for lung cancer (who knew, right? I didn't). Although I stopped taking any pain killer 3 week post surgery (they removed my entire right lung) cuz I'm stubborn as a bull and a little (a lot) nuts 😜, everyone's body recovers differently, so, I'd say be patient and kind to yourself as you recuperate from the surgery. Before you know it, you'll get there! Let us know if any questions... lots of folks here with years of experiences... MB
  21. Roseann / Kleo, My Med Onc had said they same thing early in my treatments, that he believed that going on steroids (or at least the higher doses of it) cancelled out the benefits of Durvalumab as well as several of the other PD1/PDL1 Checkpoint Inhibitors. Don't know if its true or not but it looks like it may well be. He had told me that if my side effects got to the point where the steroids had to be prescribed that he would suspend or likely completely stop my Durvalumab treatments permanently. Also having to wait for my Stage 3A NSCLC to progress or MET elsewhere before having the biomarker testing prescribed is questionable in my mind as well. I expect that the insurance companies play no small part in some of all this. All I know was that after almost 1 year on Durvalumab only to find out that I was EML4-ALK+ and PD-L1 Negative and that Durvalumab had already been determined to be questionable for PD-L1 Negative patients and actually ineffective for ALK+ cancers, was a waste of time and money. Now I've had a recurrence and MET to another Lymph Node. (On the bright side I did get to meet some nice people here in the Durva Club and in the LUNGevity Forums in general). I guess I will be joining a very select ALK+ Club as well now. My ONC said today that after 19 years as an Oncologist, that I am his very first actual ALK+ patient. Although he and his CNP supplied me with a lot of information, thank God that there is a ton of information out there on this and a very informative "private" ALKpositive Facebook group that I've also joined. I'm starting my Alectinib meds for my EML4 ALK+ Targeted Therapy this evening. Just waiting to see if I grow hair everywhere, develop fangs and claws and then start howling at the moon after taking my first few doses. 😮 Maybe I won't need a Halloween costume for Trick or Treat this year! 😀 Best to all. -Ron
  22. Good Wednesday to all, Uneventful #20 put behind me yesterday. Lab results remain within normal parameters. Persistent side effects: Itchies-no better, no worse, just there...alleviated with Rx 2.5% Hydrocortisone cream or OTC Allergy pill. Headaches-Comes and goes, usually tension/stress related to my tightened traps/sternal neck muscles. Having the Infusion port placed on my left subclavian really messes with my neck muscles. If my hand held Homedics Massager doesn't relieve my tightened neck muscles then Tylenol or Motrin does the trick. Generalized Aches and Pains Specific to my thoracic area-I have continued to experience rib area pain as well as back area pain to radiation site. Seems to me, this is one of those "It is what it is" after having our bodies assaulted with chemo and radiation. This pain is annoying but doesn't affect my attending to my daily needs. If persistent, Tylenol or Motrin works. Fatigue-This one is a doozy. Slays me everyday but I got to admit, keeping a physical exercise regime does seem to keep the fatigue manageable and allows me to attend to my daily responsibilities. Such a conundrum......”I'm exhausted, let me go exercise”. WHAT!?!?! So I continue to bike for an hour everyday to keep me motivated, to keep me physical, to make me feel like I'm really and truly participating in my care.....(gotta do the self talk because most of the time I just ain't feeling the love to get out there in the elements and ride) Weight Gain- Haven't gained a pound for a month but I did increase my exercise, and I did cut down on my intake. But the fact still remains that I put on 25lbs since January. Loose Ends- Ron-Thank you so much for your informative updates. Hip, hip hooray for moving forward with Alectinib.....I wish you nothing but continued programmed cell death.....go get'em tiger👍 Just a little FYI if helpful for the many comments on muscle aches and pains. My husband is your typical athlete gone old but somebody forgot to tell him.....so muscular, joint and nerve pain is a way of life since he insists on being "too" active. For me, these listed remedies have been beneficial to my aches and pains too. Here's a couple that works well for us. By prescription only VOLTAREN or DICLOFENAC SODIUM. Non steroidal anti inflammatory. A topical gel that may help with your osteoarthritic joint pain, musculoskeletal pain as well as strains and sprains. Does come in transdermal patches too. CAPSAICIN (Chili Peppers) cream or patches OTC. Blocks pain messages to nerves. Useful for headaches, inflammation and nerve irritation. LIDOCAINE 4% Patches OTC or Rx for stronger dosing-Numbing agent for joint or muscle pain. CANNABIS CBD and THC Balm-We we’re gifted with a jar of the real deal. I tried it on my back muscles where I can feel the tightness and nerve irritation...my back felt better but nothing more significant than any of the aforementioned treatments. Thank you all, Blessings and Gratitude for our sharing and caring DFK
  23. Your too funny lol! Your posts always bring a smile to my face. I'm sorry you can no longer practice medicine, you were on to something there, didn't your doctor realize that lol! Have a peaceful evening 😃 Roseann
  24. Hi BarbLu, Welcome to the group! So happy to hear your tumor was found early. Recovery takes time, but you will get there. Everyone is very helpful so if you have any questions ask away!
  25. Kleo


    Kate, Sounds like this doc is gonna be more on top of it! Hopefully, he'll help find a better treatment plan for you. I quit the Durva too...bad side effects for me- metasticized- and also no PDL1. Those little nodules show up a lot I think. I had one show up during my Durva...even glowed some on the PET...like a 3 or 4 I think. They (Pulp-Fictioned me) biopsied it...and it was just inflammation. Keep us updated! ☺️
  26. Hi I’m a newbie. In July a very small tumor was found in my lung (found by accident) since I had no symptoms. I’m actually a 21 year Lymphoma patient and have a routine CT scan to make sure everything was ok. Well thank God I had the scan because they found lung cancer, stage 1a adenocarcinoma. By the way, never smoked a cigarette in my life! Anyway after doing the needle biopsy, I had 3/4 of my left lobe removed on August 29. They also removed about 5 lymph nodes, which were thankfully all clean! My prognosis is good, no further treatment needed, only CT scans every 6 months. It’s been about 7 weeks since surgery and I still am not back to myself! I still have some chest pain and do get a little winded. I feel like I should be all better by now, but the recuperation is taking longer than I anticipated. I guess I need to be patient!
  27. Hi Cari - So glad you found us. There is so much information on this site and so many wonderful, helpful people. We also have a lot of long term survivors so keep this in mind: there is hope. Now, this is what I tell the newbies: forget the statistics - they are b.s. There are so many factors that the statistics don't include - your dad's overall health, newer treatments, people who dropped out of treatment, etc. Do you know what your dad's next steps will be? Chemo, radiation, or a combo? I was diagnosed with stage 4 adenocarcinoma in 2016 and have had two recurrences. I've been through chemo (twice), radiation, and SBRT. I'm still standing, albeit with a chip on my shoulder about cancer. 😁 Please ask us anything. We've all walked in your dad's steps or in yours. We're here to help.
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