recce101 Posted September 10, 2006 Share Posted September 10, 2006 Had an exploratory surgery 8/31 and got home 9/4 with NSCLC adenocarcinoma diagnosis, tentative Stage IIIB or IV. Will see oncologist on 9/12. Healing well, feeling much better than expected, wife and I are experienced in caregiving due to parents, we're both fine emotionally. Assembling questions for oncologist, suggestions welcome. I need exercise, but wife wants me to be very cautious, as expected. I've done an exercise routine every day for 50 years and the unused muscles are bothering me more than the incision. Any suggestions on how far I should go on the exercise? Stationary bike? Arm and leg exercises lying flat on back? Other? Thanks and Aloha! Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted September 10, 2006 Share Posted September 10, 2006 Ned,welcome to our support family.There are many knowing and caring people here that can help you along the way with this. In answer to the exercise question,I think you should take it fairly easy after surgery.I have always noticed the body sort of lets you know how much you should do.I usually do that much and then kick it up a notch or two.As much activity as possible is good as long as you don't overdo. Quote Link to comment Share on other sites More sharing options...
Kasey Posted September 10, 2006 Share Posted September 10, 2006 Let me welcome you here, Ned. I'm real sorry to hear your dx, BUT many here are doing GREAT ~ YEARS after such a dx, so be heartened. As for exercise, my WONDERFUL doc told me to exercise and do what I can...........when I can't...................STOP. I believe it too. So do what you can and when your body tells you it's ennough, LISTEN. Keep us updated as you travel along this bumpy journey! Kasey Quote Link to comment Share on other sites More sharing options...
joanie55 Posted September 10, 2006 Share Posted September 10, 2006 I just want to welcome you and wish you well. You sound like you have a great attitude and that will surely help you through this. Also being in such good physical shape should also help. Can't really help with the exercise question, but I'm sure others will. Joan Quote Link to comment Share on other sites More sharing options...
Ry Posted September 10, 2006 Share Posted September 10, 2006 Welcome, I am glad you found our site. When you get your treatment plan on Tues let us know what it is. We have many stage IV survivors here doing very well. As far as exercise, I would try walking first (good for the heart and lungs) and go from there--but add that to your list of questions for the doctor. I think regular walking has helped my husband and others do well. Rochelle Quote Link to comment Share on other sites More sharing options...
Maryanne Posted September 10, 2006 Share Posted September 10, 2006 Hi Ned, I just want to welcome you here. You seem to have a postive attitude and are ready to fight. That is half the battle there. With all your physical exercise and being in good shape, that is a plus and should help you with this battle. I cannot answer your question about exercising but what Frank and RY said makes sense to me. I know you will get more responses to your question. Why don't you just ask your Oncologist. We are always here for any concerns you may have. This is a wonderful support sight and I am so sorry you had to find us. So many have walked in your shoes and even though they are stage IV they are doing just fine. LC is not a death sentence, there are so many different kinds of treatments now of days. By the way NED means so much here. People here love NED. In medical terms when a person goes for there CT scans after treatments, if it comes back NED that is time for celebration. NED stands for No Evidence of Disease. So Welcome Ned, and know that one day you will see you name on your results and we will celebrate with you! By the way, you dog is beautiful. I love were you live, Iam kinda jealous about that. Let us know what the doctor tells you. Maryanne Quote Link to comment Share on other sites More sharing options...
recce101 Posted September 10, 2006 Author Share Posted September 10, 2006 Thanks for all the fast responses. It's not yet daylight here in Hawaii but I think I'll get dressed before anybody else wakes up and walk around the cul-de-sac. This website is much, much faster than the CSN, which has good content but is sluggish. Bandwidth, I guess. Appreciate the suggestions on questions for the oncologist, still looking for more. Quote Link to comment Share on other sites More sharing options...
recce101 Posted September 10, 2006 Author Share Posted September 10, 2006 [Maryanne] Hi Ned,By the way NED means so much here. People here love NED. In medical terms when a person goes for there CT scans after treatments, if it comes back NED that is time for celebration. NED stands for No Evidence of Disease. Yes, this NED thing sort of threw me off until I found an abbreviation list somewhere. Mine is short for the last name, unpronounceable by many not familiar with Czech names. I won't change my nickname, you won't change your abbreviation, so we'll take it as a good sign and try to merge the two. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted September 10, 2006 Share Posted September 10, 2006 Hello Ned and welcome! I see you have gotten some very good information already here. I cannot really add to that but will give you a suggestion that you might hear a few times. Get a notebook to keep track of those questions you are assembling as well as to have a record of tests, results, notes from your appts etc. Keeping them in an organizer makes it easier to have things in one place for future use. Please keep us informed of your progress and let us know how else we can help you along the way. All the best to you, Chris Quote Link to comment Share on other sites More sharing options...
recce101 Posted September 10, 2006 Author Share Posted September 10, 2006 Well, I didn't make it out of the house before the wife woke up. She insisted on going with me, which is okay, because she needs the exercise. She leashed up our precious golden retriever, so the 3 of us had a delightful pre-dawn walk around our neighborhood. Now I'm looking for upper body exercise. I have a 15-lb weight bar I've been using for years. Maybe I'll lift it a few times and see how it feels. Incision is doing great, and overall I feel much better after quitting the oxycodone. Standard Ibuprofen doseage does the trick just fine. Quote Link to comment Share on other sites More sharing options...
marym Posted September 10, 2006 Share Posted September 10, 2006 Hi Ned, I'm sorry you had need of the site - but welcome. My onc suggested that I do whatever feels comfortable for me - as far as exercising. Unfortunately, I am less into physical activity, so I seem to keep being taken to less. Good luck. Mary Quote Link to comment Share on other sites More sharing options...
Don M Posted September 10, 2006 Share Posted September 10, 2006 Hi Ned and welcome. You seem to have a great attitude which is very important in coping with lc. I think walking is the best exercise. Don M Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 10, 2006 Share Posted September 10, 2006 Just found your post and saw your gorgeous golden in the picture. I was going to say that a good exercise would be to go with the golden for a nice walk but I see as I read further that you have done that. The day I came home from my thorocotomy, and removal of my right upper lobe we took my Collie- Mitch- (that we had at that time) for a walk and believe me that was about all I could handle. Glad you found us. Keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
Raindog Posted September 10, 2006 Share Posted September 10, 2006 Hi Ned, and welcome, I love your attitude, it's very inspiring and it will serve you well through your fight! Sounds to me like you know your own boundries and what your body is capable of in terms of exersice. Walking and some light upper body work seems like a good call. My very best to you and your family, -Rod Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 10, 2006 Share Posted September 10, 2006 Welcome, Ned. Looks to me like you have things well in hand so far. Don Quote Link to comment Share on other sites More sharing options...
ma's kid Posted September 10, 2006 Share Posted September 10, 2006 Welcome to the family, Ned! Sorry you need to be here but really glad you found us..lots of info and support here to help you along this journey. Please keep us posted and agree *walking* is the best exercise. It gets everything moving! We're here if ya need us Love, Libby Quote Link to comment Share on other sites More sharing options...
chloesmom Posted September 11, 2006 Share Posted September 11, 2006 Hi Ned, I had a visit from a physical therapist on my second day in the hospital post-surgery. We went for a walk in the hallway, and she said that I should get up and walk as often as possible. I did, and I think it accellerated my discharge from the hospital. My first big walk once home was the day after coming home (the trip home did me in for that day), and it was a walk around the perimeter of my back yard, me clutching the phone in case I got into trouble and needed to call my husband. Since then, I've been told every time I visit my surgeon to keep up the exercise and do as much as I possibly can to keep that lung function going. I've followed his advice and feel really great right now. I would probably take it easy if I were you until you visit your surgeon for your two week follow-up, or your oncologist, whichever comes first. Good luck to you. Cindy Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted September 13, 2006 Share Posted September 13, 2006 NED!!! We love Uncle NED!! Welcome! Quote Link to comment Share on other sites More sharing options...
recce101 Posted September 14, 2006 Author Share Posted September 14, 2006 Had a very good meeting with the medical oncologist on Tuesday, Sep. 12. Highly recommended by friends and several medical professionals. He reinforced our positive outlook, and there was no discussion of "how long with/without treatment" or "what are my chances," but an open conversation about what treatment is best for me at this time. Will have a consultation with a radiation oncologist and a nurse who specializes in chemo side effects, also get a port installed, while waiting for the thorocotomy incision to heal a while longer. Then about the end of September, start chemo using carboplatin and taxol initially, probably adding avastin for the second cycle. I'll make future postings in the NSCLC section... Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted September 14, 2006 Share Posted September 14, 2006 Ned, Sounds like things are progressing well for you and your treatment plan! Hoping it will not be long before you are posting to say you are Ned with NED! Chris Quote Link to comment Share on other sites More sharing options...
RandyW Posted September 14, 2006 Share Posted September 14, 2006 Ned, is your Oncologist Dr Peter Ennever? That was Debs Oncologist and He discusssed things same way as yours. Never a "How Long", But "This is the Plan" I thought that was the greatest thing. Congrats on the plan of attack. Oh the Room where they keep the port a cath stuff might remind you of a Bait Shop with all the hooks and stuff on the walls if it was like ours. Good Luck and sending prayers. Quote Link to comment Share on other sites More sharing options...
recce101 Posted September 14, 2006 Author Share Posted September 14, 2006 Randy - I sent you a PM. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted September 14, 2006 Share Posted September 14, 2006 Welcome, Ned. Any questions or concerns we are here to try to help. Cindi o'h Quote Link to comment Share on other sites More sharing options...
ma's kid Posted September 14, 2006 Share Posted September 14, 2006 Happy to hear that your mtg with the onc went well and it sounds like there is a plan in place! Please keep us posted on how you are doing. By the way, if I didn't tell you before...the dog in your avatar is gorgeous. Libby Quote Link to comment Share on other sites More sharing options...
ernrol Posted September 16, 2006 Share Posted September 16, 2006 Ned, This looks like a great web site, but I really do not know what I am doing. Maybe you could clue me in. Ernie Quote Link to comment Share on other sites More sharing options...
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