recce101

This probably calls for a new subgroup -- The Degenerative Spine and Joint Changes Club, or The Degenerates for short. But seriously, I think one reason we're having so much trouble sorting out the met vs. non-met symptoms is that most of us -- at least those anywhere near my age plus those younger who have a previous injury -- have some spine and joint issues going on independent of any cancer in those areas. Perhaps a met, especially in the beginning, doesn't cause any identifiable symptoms of its own, but just adds to what's already there. If undiscovered and untreated, the met may eventually result in symptoms which DO have identifiable characteristics. There I go, overanalyzing again. Aloha, Ned

I can't really say why I got on this subject today. I never have any back or hip pain when seated or lying down, just when standing or walking for more than a few minutes, and even that is probably less than most people here who have never said a word about their own lower back problems. I can recall times many years ago when I got an achy lower back after standing or working for long periods without the opportunity to sit down, and this may be just the same thing magnified by age. The bone scan I got in September 2006, during my diagnostic workup before starting chemo, said "Degenerative changes are seen in the spine especially in the lower lumbar region. Mild benign joint disease is noted." And there's no reason to expect it would have gotten any better on its own! But I did discover something interesting last month when the wife and I started taking longer walks with Rosie just after dinner. The first couple of evenings I started getting a good bit of lower lumbar discomfort within the first half-block, so I would walk with my hands behind my back massaging that area, and being tired near the end of the day, I also had a tendency to hunch or lean forward while walking. We were discussing what to do about this rather pathetic sight, and I remembered a time in the early 1960s when I hauled a heavy backpack through the Nevada hills for several days at an Air Force survival school. I hadn't worn a backpack to any extent before that school, and I was surprised how good it made my back feel. So our son donated his oldest backpack, which I loaded with some exercise barbells and adjusted so the heaviest part of the pack touched just above my back pockets, and off we went the next evening. What a difference! My shoulders felt great the entire time, and there was never a hint of discomfort from the lumbar area. Our walks are getting longer, and Rosie loves them so much that we even go in the rain, carrying a big beach umbrella for cover. I guess I won't worry, at least for now. Thanks and Aloha, Ned

I've got a question for anyone and everyone dealing with lung cancer who (a) has developed bone mets, especially in the lower back, pelvis, or hips, OR ( has had symptoms causing worry about bone mets which after investigation turned out NOT to be mets: Have you come up with any clues or symptom characteristics that might help to distinguish one from the other? The actual sensation itself? Whether or not it goes away after you've been active for a while in the morning? Whether or not it seems related to your sleeping position or any particular activities you did the previous day? Whether it gets worse day by day or just comes and goes over weeks and months? Anything else? Of course none of this is 100 percent and I remember a case or two where lower back pain was checked out, said not to be a met, attributed instead to a previous injury, then later turned out to actually be a met. But maybe there are some clues that are reliable most of the time...? Aloha, Ned

Hi, Gloria. I answered in some detail in another thread, but I just thought of something else. The Taxol/Carboplatin/Avastin infusion sessions are quite long, several hours, especially the first one or two. My son surprised me by showing up at the clinic with a brand new portable DVD player and a couple of entertaining movies. I appreciated that more than anything I've received in years, and by now I have a pretty good collection of DVDs. Aloha, Ned

Hi, Gloria, welcome to the group. I saw your post at cancergrace.org and have been watching for Dr. West's reply -- he will probably make some comments today. A few months ago someone asked him about the cooling technique during infusions, and as I recall they weren't using it at his clinic at the time, but he thought the approach had merit and he was looking into it. Most oncologists discourage the use of special diets during chemo. While there may be evidence that certain diets may have anti-cancer properties when used alone, sometimes they can work at cross-purposes with the chemo drugs that are being received. A relatively normal, healthy diet is generally recommended. Sometimes that has to be modified because of eating difficulties during chemo treatment, and many of us had to rely in part on liquid nourishment such as Ensure, Boost, or Carnation Instant Breakfast powders mixed in milk. During my Taxol/Carboplatin/Avastin treatment I had a lot of problems with my feet -- peeling, blistering, burning rash which limited my walking, and during my 6th cycle a potentially serious onset of peripheral neuropathy. Maybe keeping my feet cool during infusions would have helped, but I hadn't heard about the technique at that time. I did soak my feet in ice water at home, and that helped some. I think you're very wise to pursue the cooling products. Your father at 73 will be getting the same chemo regimen that I had at 71. Aside from the foot problems mentioned above, my side effects were quite tolerable and I had good results from it. Following the link below will give you a lot more info on my experience with the treatment. Best wishes to you both and Aloha, Ned

That's great to hear, Amber. Now let's get that truck fixed! Aloha, Ned

So happy to hear that -- and keep those reports coming! I think many of us could tell stories about our first visit to the site, about the speed and quantity and helpfulness of the responses to our very first post. LCSC was near the top of the list when I decided to Google "lung cancer support" one predawn morning -- and I never needed to go to page 2. Much Aloha, Ned

Ashaki, no need to apologize, that's what we're here for. And your use of the word "release" is very appropriate -- that's exactly what you're doing, releasing those negative thoughts that will hurt YOU more than anyone else if you keep them bottled up inside. A number of our caregiver members have been through very similar experiences, so keep venting, and they'll help you through yours. Aloha, Ned

Lili, that sounds much like what happened to me. In retrospect, and judging from the mess my right chest was in when the surgeon looked inside, the fluid had probably been collecting for months. Since I was in pretty good shape otherwise, the weakness and shortness of breath didn't become apparent until the fluid had collapsed about 2/3 of the right lung. To clarify, the fluid is not IN the lung, but in the "pleural space" between the outside of the lung and the chest wall. A couple of excellent references on pleural effusions: http://onctalk.com/2007/03/17/intro-to- ... effusions/ http://onctalk.com/2007/03/18/mpe-managment-options/ Contrary to what I was told to expect, my pleural effusion DID clear almost entirely with chemo, and I now have practically full use of that lung again. I'm sorry it's been so hard for you to get information. Do you think your dad would authorize you to speak with his doctors? You're not only his daughter, but also a business partner. Even if you don't have all of the details, knowing at least the cell type (and subtype if it's NSCLC), if and where it's spread outside of the lung, and what sort of chemo and/or radiation is planned will allow us to give you a lot of first-hand help. Best wishes and Aloha, Ned

Hi, Sharon, welcome to the LCSC! May I also suggest you visit cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here. Best wishes and Aloha, Ned

Amber, consider it a real blessing that she has opened up the channels of communication as she has. So many people don't for one reason or another, and things that need to be said don't get said. What a joy to talk about the old days -- the high points that are still so vivid, the disappointments that have mostly faded, the fun times, even some of those embarrassing moments. Whether she's with you two months or much longer, you'll always treasure this special time. Your Nanny must be a wonderful person, and I applaud her for donating her body to science. My mother did the same, and she wanted her ashes to be interred in the memorial garden of the medical school which received her body. Much Aloha, Ned

Carole, I haven't read the studies, so I guess it's another one of those semantics things. What they're calling QOL sounds to me more like performance status, maybe with some other stuff thrown in. I think I'm resisting someone else telling me what my quality of life is. It seems that all three of us are on the same page here. Aloha, Ned

That makes sense, but I wonder if we're reading too much into it? Maybe when we start making treatment decisions based on that premise, we're taking things a bit too far. It might be more accurate to say "someone who feels really good is likely to live longer than someone who feels really junk" -- a pretty safe general statement. Personally, I'd much rather feel good for a short time than junk for a long time. At this point, longevity is not that important to me. Aloha, Ned

Amber, don't beat yourself up for not being at the hospital. There's nothing you could have done, and your being there might have caused the others to worry twice as much. Take care of your own health -- easier said than done, but you'll be helping the family, not just yourself. Peace and Aloha, Ned

Once again, Carole cut to the very center of the issue -- Connie, too. But David, this relationship has survived 4 1/2 years, and you can't argue with success. I think all the positives you listed outweigh this one negative, which, for all I know, could be spurring you both on and contributing to that success! Aloha, Ned

Hi, Amber. I'm several time zones removed and just now read your posts. You've received some excellent advice, and the only thing I would add is that your Nanny seems to be getting very appropriate medical treatment. The main concern right now should be her comfort and trying to shrink the tumors (with radiation) so they don't interfere with vital blood vessels, nerves, and airways. Chemo would probably do more harm than good until she's stronger. Please let us know what the doctors say tonight. Best wishes and Aloha, Ned

Judy, don't feel like the Long Ranger, 'cause I don't know either! I asked my onc about it a couple of appointments ago, and he said he doesn't use them for treatment decisions and doesn't order them routinely. He and Dr. West seem to be in sync on this as well as when PET scans are and aren't helpful. Ned

Sandra, I hope you've gotten some answers by now, since I don't think I have any to offer. I haven't had any deep pain in the legs, just very touchy and painful skin from a flare-up of pre-existing stasis dermatitis when I was on the Taxol/Carbo about 18 months ago. The skin pain was relieved by a potent steroid cream prescribed by my dermatologist, and while I still have the condition in mild form it hasn't been very bothersome since I finished the harsh chemo cycles. I'm still on a diuretic for that and other reasons, and I've found the best thing for relieving the tight-skin feeling around the ankles and calves is plain old pure petroleum jelly (Vaseline). I apply a thin film of that every night after my shower, but use a lotion like Cetaphil everywhere else to reduce the Tarceva dry skin effect. Please let us know how you're doing. Hope you can enjoy that brief vacation! Aloha, Ned

Hi, Haley, welcome to the group! Sorry I missed chat -- it comes a bit early in the day for me, and I've made only a few sessions. We have a number of members who were diagnosed stage IV years ago and are still doing well, and you'll probably be hearing from some of them soon. We don't put a lot of stock in statistics, as you may have discovered already. I believe he probably said (or meant to say) "cure" instead of the second "treat," and that is generally considered correct for stage IV (and IIIb, my stage). The word "cure" has a specific meaning in cancer: 5 consecutive years with no evidence of disease (NED). But even if we can't reasonably expect to cure these cancers, it's becoming possible to manage many of them as a chronic condition long-term or even indefinitely. It sounds as if your mom is receiving aggressive treatment, and that's possible because of her overall good health. Let us know what chemo drugs are planned and those of us who have had the same ones can give you some tips on side effects. Your mom is very fortunate to have you as her helper and advocate. Best wishes and Aloha to you both, Ned

Probably Taxol and Carboplatin for the chemo, and possibly Neulasta for the WBC. Many of us have had the same regimen. Let us know how the side effects are going -- maybe we can come up with some tips. Aloha, Ned

Hi, Ashaki, welcome to the group! I know you feel the weight of the world on your shoulders right now, but please know that there are some terrific people here who have been in much your same position and are ready to help you all the way. What treatment is planned for your mom? Aloha to you and your family, Ned

NED means "no evidence of disease." When I first joined the site in September 2006 people answered back and said "we love NED here." Then I found out they weren't talking about me personally, though I am quite lovable! Welcome to the group. We all understand your shock. Any questions at all, just ask. Aloha, Ned

Let's look on the bright side for a while. In spite of our various personal tragedies and physical ailments, there are certain to be some very common mishaps and problems that we've somehow managed to avoid up to this point in life. These are things that happen to just about everybody, but they've never happened to us, perhaps due to luck more than anything else. We may have never mentioned it to others, thinking we'd get funny looks, so now is the time! Here's mine: I've gotten through life so far without ever breaking a bone! Aloha, Ned

Hi, Barbara, a big welcome to the LCSC! You've joined a remarkable group, one that will become part of your extended family to a degree you never imagined. Please take some time filling in the details of your cancer story up to this point -- that will trigger more and very specific responses from people whose situation and cancer history are much like your own. Aloha, Ned

"Statistics" is a hot-button topic around here. Let me just refer you to something I wrote to a new member a few days ago. Sounds like you're quite healthy, so chances are you'd be out on the good end of any survival curve: http://lungevity.org/l_community/viewto ... 507#365507 Aloha, Ned