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  1. Really great!!! He was prescribed 10 mg of prednisone 3x a day and oxygen at level 3. He is on 10 mg once a day now. Also, ( this is the best part for him and us) he goes out everyday and works around in the yard for a little while...something he adores doing!!!! His hair is coming back in really fast and with the prednisone he has gained about 5 pounds...he lost about 20. We are all so thankful. He has a follow up appointment with radiation next week and then in September with his chemo oncologist and pulmonologist. Thank you for asking!!!!
    2 points
  2. SherryZ

    So much so fast...

    On July 17th I went to see my PCP thinking I had pneumonia. Today I'm sitting here with a diagnosis of limited SCLC, although my oncologist hasn't received the results of the brain MRI yet. Since learning that I have SCLC on July 24th, I've had a CT, bronchoscopy/biopsy, PET scan, radiation oncology consult, a chemo/radiation plan made and an Xcela port placed for chemo. I haven't gone one day without a test or consult since the middle of July. On Tuesday I go for a test for the accuracy of the radiation markings, then am scheduled to start radiation and chemo on Wednesday. I had the brain MRI today, which is the first diagnostic test that didn't seem to happen over night. Now I have three days of nothing but thinking and time for everything to sink in. My husband, kids and I have planned a "go bald" picnic this Sunday. I'm going to lose my hair anyway, so I might as well do it on my terms, right? My youngest (who's 25) is going bald with me. My husband probably will do the same. And then we're sending my hair to a children's charity since I haven't had it cut in over 13 years. What a way to finally have that done. After that, who knows what will happen. I feel like I was given the best bad news when I was told I have limited SC. Now I feel like I'm waiting for the rug to be pulled from underneath me as I wait for the results of the MRI. I have my small moments of breaking down, but I mostly feel emotionally numb at this point. I'm just now beginning to understand all this information that's been tossed in my lap. I'm scared I won't have time to understand the rest.
    1 point
  3. LexieCat

    So much so fast...

    Does that mean you have to tip?
    1 point
  4. Michele

    So much so fast...

    Hi Sherry Z: my husband has limited stage also. Going threw chemo we found the most important thing is drink lots and lots of water .it is very easy to get dehydrated. Also get magnesium vitamins . eat well even if your not hungry.rest when u are tired. Good luck on your journey and keep us posted. Michele
    1 point
  5. LaurenH

    Learning to accept

    Whether you walk/run across the finish line, it still counts! Good luck with your training! Keep us posted! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
    1 point
  6. Daughter, I would say the objective of second-line treatment is to achieve a reduction or elimination of tumor or tumors. You are correct, there will likely be an in-process scan about midway through and then decisions on continuing or changing therapy. Your dad will need his family to close ranks around him. Lung cancer treatment is not easy, especially the daily treatment like your dad will endure. My view, past relationships are immaterial. I would not have made it through my treatment without my wife and daughter. Their contribution was immeasurable. I am quite sure your dad will appreciate your engagement. By all means, pick our brains. Stay the course. Tom
    1 point
  7. Pegi

    Small cell

    Michele, Today was rough. They did find a fissure and with chemo it will take a LONG time to heal. I finally got him home and settled in for the night hopefully. Right now he needs sleep and rest. They gave him enough meds to choke a horse. i HAVE A LOT OF READING TO DO TOMORROW! Well the settled in did not work, He is back down in his chair and in pain. Will keep you posted. Peg
    1 point
  8. Daughter, I am so very sorry to hear of your dad's recurrence. That is what it is called when cancer returns -- a recurrence. And unfortunately, recurrence with lung cancer is common. I have non small cell squamous cell lung cancer and experienced four recurrences after treatment that showed me to exhibit no evidence of disease or NED. Because lung cancer and in fact all cancer for that matter recurs so frequently, the treatment community has moved away from the word cure. Remission is still used but the definition has narrowed to cancer that stops growing either as a result of treatment or not. Here is a good summary of lung cancer that will acquaint you with basic terms. What is the recurrence timeframe? Mine were 6 to 8 months after last treatment. It is not unusual that the duration is shorter or longer. Everyone's cancer is somewhat different. How effective will his second line treatment be? The Lord only knows. Cancer is a disease of one's genes. Everyone's genetic structure is different thus on reason for the variability in treatment outcomes. But, chemotherapy kept me alive for 2 years till a new treatment emerged from research to cause me to achieve NED. In fact, I've lived nearly 14 years after diagnosis and many in fact on this site are long term survivors of lung cancer. Those with small cell lung cancer are following emerging research in targeted therapy and immunotherapy. These new methods are promising advances for small cell treatment. Read about these here at the Clinical Research Study down arrow. You may point your dad to this site as a place where he can understand and ask questions about his treatment and interact with survivors. Questions? This would be the place for those. Stay the course. Tom
    1 point
  9. Michele

    Small cell

    Peg a big hugs and prayers for you and Lee! Today.hopefully there will be no more pain after this surgery.I was able to imagine his face with no pain after reading your note and it was beautiful! Let me know how he is later OK?! Doctors hmmm u know they never even called or returned calls on his results. I went myself to pick up his results on MRI .and what I could read he is clean!!! Monday was pets scan and I hope they call on that.yes have Lee write a note that he said not to call family.that's what my husband did.; then they can't give u a harder time blame game. Well Peg its 2 minutes to 8 am prayers your way oxox. Michele
    1 point
  10. Bee, Welcome here. I am one of the several with a military background. Bronchiectasis is nasty. It is normally associated with cystic fibrosis and or an autoimmune disease. I know because I spent about a month in an Army hospital as a young officer with symptoms. In my case, it turned out to be a nasty virus but obviously yours is different. While I understand your situation, I can't understand how the armed service could retain you on active duty. While you report your superb fitness state, loss of portion of a lung normally results in medical retirement because you've become "non-deployable". Are you being processed for military medical retirement? Military medicine is outstanding in battlefield trauma (as one may suspect) but mediocre at almost everything else. And, I understand how your hands are tied. I suspect you'll have a medical retirement board proceeding and will receive both a military retirement and veterans disability retirement along with life-long VA medical care. I live near Dallas and find the VA hospital here provides excellent care. The only problem with VA medicine is the bureaucratic shuffle getting into the system. You'll be in the system from the start. In my active duty time, we did a 5 mile run on MWF and 10 miles on Tuesday and Thursday and that routine may be too much for your condition. I'm not a physician so don't take my suggestion as medical advice. If it were me, knowing the symptoms of bronchiectasis (I do) and the irritation that excessive physical fitness activities can cause the lungs (I do), I'd be very careful with your fitness routine. Keeping fit is fine; training for half marathons is likely not. So I'd focus on fitness activities that do not overly stress lung function like weight lifting and static strength exercise. Stay the course. Tom
    1 point
  11. Welcome BeeLouise, I'm sorry to hear about your struggles. It can be tough to find a new "normal" after having a portion of your lung removed and dealing with a chronic condition. I am a caregiver for my mom, who is currently fighting a recurrence of Non-Small Cell Lung Cancer (NSCLC). She had her upper right lobe removed during her first bout with lung cancer and although she sounds the complete opposite of you physically and age-wise, maybe her experience can give you some insight. First and foremost, my mom is not the ideal picture of good health, she is 63, obese and has multiple health issues, including COPD which affects her breathing. My mom was a bit different in that she felt that she could breathe better after her surgery - the lobe they removed was filled with emphysema. But her O2 levels regularly drop as she is walking and she has been on oxygen on and off for a few years. She has oxygen piped into her CPAP at night as well. A couple of thoughts come into my mind in thinking about your exhaustion. 1) Your body is probably still getting over major surgery, especially since it sounds like you didn't have the best aftercare from the hospital. 2) While running, your oxygen levels may drop enough to tire your body out (my mom gets really tired when your oxygen levels dip or if she doesn't have oxygen in her CPAP at night). 3) Have you had a sleep study? I don't know if sleep apnea is more likely after a lung lobe removal (my mom had it before surgery), but it may be something to look into - it could also be a reason for your exhaustion. Do me a favor, give yourself (and your body) a break! Although you are young and sound quite healthy, your body still has to adjust to a huge change in smaller lung capacity and having a chronic condition. Your new "normal" may be doing other types of exercise besides running. I don't really have much for cardio suggestions - when my mom feels well enough to go, she does a pulmonary rehab exercise class at our local hospital (treadmill, elliptical, etc) and water aerobics and water walking. She looks for low impact exercise because she had rheumatoid arthritis. There are several folks on here that have a military background and can likely understand exactly what your are dealing with. I am glad you found these forums. I have been involved for a few months and it has really helped me cope in trying to find a new "normal" with my mom and dealing with her battle. I wish you the best.
    1 point
  12. Agreed--closer to 25 minutes. Always glad to contribute to research, though....
    1 point
  13. I did the survey. It took me 25 minutes, not 10. I don't think I''m slow! It seems like a worthwhile thing to do in any event.
    1 point
  14. LexieCat

    What's next?? Pls help

    Hospice doesn't mean you can't continue to care for her. I have a good friend who's a hospice nurse, and she makes regular visits to her patients in their home, managing medications etc. I'd suggest giving one or two places a call and find out about what they can provide that will help you both and keep your mom comfortable.
    1 point
  15. LexieCat

    What's next?? Pls help

    Another voice for hospice here. It's always sad to lose a parent, but to the extent we can spare them suffering, we will be honoring and caring for them. Hugs and support to you and your mom, Teri
    1 point
  16. Jeffrey N

    Brand New

    Tom she should contact her congressman ( mine was Billarackus ) and I had 100% in 30 days. I did post to her question, ask anything and I will answer how I did as I remember.
    1 point
  17. Tom Galli

    Brand New

    Jeffrey, Good to learn you are home and close to family. Could you please help another veteran on this forum with a lung cancer disability issue? Michele is the caregiver of her husband who is being treated by the VA for lung cancer in Florida. Last evening, she posted this question. As I understand it, you when through a disability adjustment when your were diagnosed with lung cancer. Might you engage with Michele and give her the benefit of your experience. You can use the private message function of the site to give her the benefit of your experience if you prefer. Thanks and.... Stay the course. Tom
    1 point
  18. Isunique

    Learning to accept

    Lauren My 5k is in Livonia Michigan. This is such a great event for all cancer patients, caregivers and survivors. I just started back adding some running in today. I should be ready for the run in September. It might be more walking, but I'll take it any day.
    1 point
  19. Lexie, Good news! No chemo - better news!!! Bridget, Absolutely agree medicine is both an art and science. While First and Second Line treatment may be cookbook (National Standard of Care), Third Line and beyond is dependent on the intuition of the oncologist. So sensing the artistic qualities of an oncologist may be an important thing to do. How it is done is beyond me. I was just lucky to have a medical artist as my oncologist. Ladies - stay the course. Tom
    1 point
  20. Tom Galli

    Trouble Logging In

    Vivian, Have you installed the LUNGevity Lung Cancer Navigator app available on Apples App store? When I accessed the site through the Safari browser on the phone, I had many log in problems. Now with the app, I have none. Hope this helps. Stay the course. Tom
    1 point
  21. BridgetO

    Introducing Myself

    Hi Nan and welcome, Everybody who replied said all the things I would have said==sleeping elevated, the pool, etc. I also had 1A adenocarcinoma. I was lucky to be able to have VATS for my lobectomy. My surgery was last November and I'm doing well. I wish all the best for you and your husband. You'll find hope and help on this forum, I think. Bridget
    1 point
  22. Steff

    Introducing Myself

    Nan, My mom, who is obese with controlled diabetes, had her upper, right lobe removed over 1 year ago. She had a large incision and still feels pain from it and pain under her shoulder blade. After about a month of recovery, my mom started to breathe better. She had to have fluid removed from her lungs a few times and still has fluid around her lung over 1 year later - her doctors say that's normal and the fluid continues to decrease. Both of these issues affected her breathing to begin with. She didn't breathe well before the surgery but breathes much better now, but she had to work up to it. Once she was done with her cancer treatment after surgery, she attended a pulmonary exercise class at our local hospital. She has attended regularly for many years as she needs it and it does wonders - they monitor your oxygen level and heart rate. As others said, she also does water walking a few times a week. Although she doesn't lose weight, she keeps her muscles in shape and gets her breathing up. She also swears by her CPAP (as others have said, if he hasn't had a sleep study, he should). Although she was on oxygen after surgery, she is no longer on oxygen full time. She does have oxygen piped into her CPAP while she sleeps and it helps with her O2 levels throughout the day. Finally, (as others have said), my mom also swears by her adjustable bed so she can sleep in an elevated position when needed. She used a wedge pillow for many years and when my parents needed a new bed, they just decided to get an adjustable one. I hope some of this info helps or provides some hope. Your husband's breathing will likely get better. Might he need to be on oxygen full time? - maybe. but if my mom was able to get off of oxygen full time thru exercise, there's a chance your husband can too.
    1 point
  23. Tom Galli

    Introducing Myself

    Nan, Welcome here. Teri's stated good points. In addition, I add having him sleep in an elevated position using triangle pillows available at mattress supply stores. This helps transfer the body weight from the back to the hips and eases incision pain. Do you have access to a pool? After his stitches (staples) are removed, it the surgical area is still painful, he might sit submerged up to his shoulders to relieve the gravitational pressure in his incisions. I, unfortunately, had a lung removed and they needed to return two times to deal with complications. I use the pool every day and it is welcomed relief for my chronic incision pain. Has he been tested for sleep apnea? If he does and he does not use a CPAP, his breathing will be complicated by the surgery. The oxygen will help but body weight and sleep apnea are companion problems. His is an early find and you should look forward to a resolved cancer but reduced lung capacity and weight will be a problem. So work on the weight reduction and enjoy quality of life without cancer. Stay the course. Tom
    1 point
  24. LexieCat

    Introducing Myself

    Hi, nan, I just had similar surgery--fortunately, I was able to get the VATS. I'm sure that larger incision of his has to be painful. I'm almost completely recovered nearly three weeks after my surgery. You might want to try to encourage him to work with a nutritionist to try to get his weight down. I had been working on weight loss when I was diagnosed but had lost about 42 pounds (on purpose) before that happened--I have no doubt losing the weight helped speed my recovery. If he can drop some weight and get a bit more active that would probably do wonders for his overall health, including the diabetes. Stage 1a is good news, as these things go--but the other health problems from the weight can be as lethal as cancer. Glad you're here--there are some very kind and knowledgeable people here! Teri
    1 point
  25. vinnpal

    Hi I'm new to this site

    Hi Lexie.....thanks and your right, this is really a great site, not only are the people so caring and informative, but the more I keep reading the posts I keep finding little tips and info to ask in my next appoint... its also a feel good place when talking to people who are going thru the same fears and anxieties that I am....so glad were all here....vinnie
    1 point
  26. Wow, that is quick. my prayers to you, and all here. Doing very well on quitting. Started Chantix immediately and have cut down significantly, about a third from normal. In fact, have plans on putting them down for good later today. It's been much easier than I expected, and my husband is quitting with me so that helps. Thank you for the positive. It seems like Tues and Weds are so far away, though. I'm trying not to think about it. Just keeping myself busy at home. I can't say thank you enough to you and everyone. So happy I found this site so soon.
    1 point
  27. Hi Katherine. I am so sorry to hear of your mothers diagnosis. My mother was diagnosed last October with stage 3a lung cancer. She received induction chemo which made surgery possible for her. The tumor was too large to remove at first. Chemo can reduce tumors and make surgery possible. She had a left lower lobectomy and then radiation after. She is currently NED, albeit it hasn't been a year, but me and my family are very grateful she is with us and currently in remission. Like tom and others have said, you are not alone and talking about the situation with your mom can be therapeutic. I would suggest, if it has not been done already, to have your moms tumor tested for mutations. My mom is EGFR positive, which I understand to mean there is a precision medecine available to attack her cancer should a recurrence occur. Feel free to message me anytime with any questions. God bless
    1 point
  28. LexieCat

    Hi I'm new to this site

    Hi, Vinn, You made it! Just wanted to welcome you. So far I've not had to go the chemo route, so I'm afraid I'm no help at all there, but the other folks here are very generous in sharing their knowledge. Glad you're here with us.
    1 point
  29. vinnpal

    Hi I'm new to this site

    Thanks Tom, I love reading your posts and all the info you share....you are truly a role model and can easily lift ones spirit and hope....
    1 point
  30. Vinnpal, Welcome here. I'm a lung cancer survivor with 18 total taxol and carboplatin infusions and after each one, my red and white blood counts bottomed out. I received injections of Procrit and Neulasta about 3 days after each infusion to boost counts. That worked. My appetite also hit bottom. Everything tasted horrible. One day, my wife made chocolate mint ice cream with crushed Oreo cookies. I don't normally like mint but the chemo must have altered my taste buds enough to love it. I devoured chocolate mint ice cream every chance I could and didn't loose much weight. So grab a bunch of Ben and Jerry odd-ball flavored ice cream pints and see if you like one. That will fattens you up; even try mint! I've also missed both radiation and chemo sessions due to illness and low counts. These were rescheduled but a 2 week delay shouldn't effect your treatment. Doctors safe-side the treatment frequency to account for treatment delays. Moreover, I was told that chemotherapy agents remained in my body for a month or more after my last infusion. I'd worry more about your diet than the 2 week delay. Stay the course. Tom
    1 point
  31. Just click here: http://forums.lungevity.org/index.php?/forum/3-introduce-yourself/ Then click the link on the right (it's orange on my browser) that says "start new topic"--that should do it! Teri
    1 point
  32. Vinnpal, You are in now. Welcome. Peg
    1 point
  33. Mally

    Mom diagnosed last week

    It was the best thing i did to join this group of positive and supportive people and it helped me so much and i have had surgery and chemo and scans showed no sign of cancer so i feel very lucky and positive .. Sent from my SM-N920I using Tapatalk
    1 point
  34. Maliko, Well, these are some reasons I believe ecigarettes are dangerous to a lung cancer patient -- here and here. The research on possible harm of ecigarettes is admittedly incomplete but as a lung cancer survivor, I'd be reluctant to introduce any potential irritant into my lung during and after treatment. I fought hard to achieve my NED (no evidence of disease) and go to great lengths to avoid all irritants to stay that way. Stay the course. Tom
    1 point
  35. Marian

    Stress Reduction

    Just picked up the recent issue of TIME on Mindfulness. Awhile back I watched a 60 minutes segment on it and thought it was a bit whacky. As I have a tendency to expect the worst and can go to some very dark places, I bought a copy hoping it would help me find ways to stay out of those dark places. I have been struggling with handling the stress of my recent diagnosis, Stage 1A and the fact that lung cancer has changed my life forever. I really liked what I have read so far. I would highly recommend this magazine to anyone struggling with stress overload. I found the ideas simple and practical. By the way, as new member, I so very much appreciate each of you and your willingness to share. It has helped me tremendously. Thank you.
    1 point
  36. LexieCat

    Wrote Some Letters

    You can DO this. You're still dealing with the shock of a recent diagnosis. As things become clearer (and apparently with this stuff it never becomes TOTALLY clear), you will adapt to a "new normal." I was the support person/caregiver to partners with liver disease and with testicular cancer. I did a lot of research and reading so I knew what would help them and what questions to ask the doctors. I also connected with communities like this one to talk with other people dealing with the same stuff. All of that made me feel like I had a modicum of control--not over the disease, but over what I WAS able to control. In talking with other caregivers and survivors I learned what is and isn't helpful (both for you and for the person you're caring for), remembering that everyone is also a little bit different in what they need/want. Some of my own tips, based on my own experience: Get organized--make up file folders (physical, and/or on your computer) to hold copies of lab/test results, reports, etc. Take good notes at meetings with doctors, and if you can't remember something, call back. Make sure your wife has the appropriate consents and advance directives on file (you can find something for your state online), to ensure you have access to all her medical info and to ensure the doctors are free to talk with you. You might also want to have her execute a Power of Attorney that would allow you to manage any of her affairs if she is unable to keep up with it for a while. (I'm a lawyer, myself, and there are forms online, but hiring a lawyer is the best way to make sure everything is done right). Keep a current list of contact info for all medical professionals helping your wife, a list of all prescribed medications, and a running narrative of what happens at each appointment or test. You'd be surprised how handy it can come in to have that info available at all times. I keep my folders with all my important medical info in a DropBox folder--that way I can access it from my phone if I don't have my physical folder with me. Read up on treatment protocols, options, considerations that may be applicable to her diagnosis. You can help plan/prepare good, nutritious meals that will promote her health and overall well-being. You can find out what side effects her treatment might have and prepare to help minimize some of it or make her more comfortable. I know what you mean about its feeling surreal that the rest of the world goes on. Actually, though, that's how it should be. The world doesn't stop for us and our problems or our grief. Be patient with yourself, and as much as you can try to be patient with others (my own patience has been stretched a bit thin the last few days). All of this will help you be the most effective caregiver/advocate that you can to help Dawn during her fight. And yes to what Tom said--you can lead the cavalry!
    1 point
  37. Tom Galli

    Stage 4 adenocarcinoma

    Welcome Renee. So, I am of that certain age where one of my favorite songs is "Walk Away Renee." It is one of those haunting melodies of my youth released in the summer of 1966 and blaring from every Ocean City, New Jersey arcade juke box on the boardwalk. Despite the popularity of the song, I've met few Renees' in my my life. I rather our meeting not be caused by your stage IV adenocarcinoma diagnosis but suggest that we've met at the right time and the right place. Look around, read profiles of our members and staff, and read through the NSCLC group on the forum. You'll note many of us are long time survivors. There is nothing good about a lung cancer diagnosis but your type -- adenocarcinoma -- happens to respond very remarkably with new forms of targeted therapy. Here is some information on targeted therapy. Your key take away from reading our profiles is if we can live, so can you. Let us know more about your diagnosis and tell us, in particular, if your tumor biopsy has been tested for biomarkers. Informing us about your treatment plan will allow members who have similar plans to wade in and tell you what to expect during treatment. Stay the course. Tom
    1 point
  38. Mitch, I don't want to gang up on you but I'm a long tenured lung cancer survivor who has been bombarded by miracle cures and cancer avoidance methods for 13 years. I am very skeptical as a result. Here and here are summaries of my opinion on the matter for your consideration. Stay the course. Tom
    1 point
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