recce101

That's a good one! But I won't use it on my wife, not on Father's Day... Ned

Wow, that's terrific! Please tell us more of your story. When you say working "in" the gulf, do you mean out on a platform somewhere? Welcome and Aloha, Ned

Linda, your question to Dr. West DID post on cancergrace.org. The site has been having some problems with messages APPEARING to hang and not go through when you click Post, though they actually did. If you get "Waiting for cancergrace.org..." for a long time in the status bar and the cursor hourglass keeps going, back out of the site and then re-enter, and see if the message actually posted. In practically every case you'll find that it did. See this: http://cancergrace.org/forums/index.php?topic=324.0 Dr. West was active on the site earlier today, so maybe he'll answer today. Aloha, Ned

Congratulations, Cathy! Aloha, Ned

Hi, Mary Jo: There's another thread on Alimta side effects that's still active here... http://lungevity.org/l_community/viewto ... highlight= though it's recently morphed into a discussion of ports and PICC lines. Several members are currently having some problems with Alimta, and you might have something to offer one another. Alimta is "supposed" to be more easily tolerated than, for example, Taxol and Taxotere, but that doesn't seem to be true for many people. If you haven't already, please 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. Aloha, Ned

Right, Carole, the cornea is at the very front of the eye, separate from the lens, which is a bit further in. Different part numbers, so to speak. The lens is the thing that gets cloudy with garden variety cataract. I've had cataract surgery on both eyes to replace the cloudy lenses with implants, and that restored my vision to a youthful 20/20! The entire process was very impressive, and the corneas are still intact. Based on recent studies, I believe the maximum donor age is being increased from 65 to 75, so by the time I meet the "other requirement" my donation should be acceptable -- that is, unless I live too long. I'm registered with the Hawaii Lions Eye Bank, and I've been a member of the Wahiawa Lions Club (in Central Oahu) for 23 years. Aloha, Lion Ned

That's great news, Bruce! Aloha, Ned

Marianne, that's absolutely terrific! But I understand your concerns, as we all have them, and we deal with them in various ways. Here's my outlook: As long as we're in this life, we will always have problems to face and uncertainties to consider. That's a given. But we all have moments throughout our lives when the weight of the world is lifted from our shoulders, at least for a while. Remember back in your childhood when you came home with a good report card and the next day started summer vacation? Or when one of your kids had been sick and then one day you saw that old sparkle again? A good scan calls for the same type of celebration. Sure, something may come up in a few months or years, but for the time being, it's clear sailing, so enjoy! Aloha, Ned

Thanks, Carole, that's something for me to check on. I've had "organ donor" imprinted on my drivers license for many years, and hadn't considered the impact of my recent cancer and chemo. I "assume" somebody would check my medical history before transplanting part of me into someone else, but I probably should verify that. Aloha, Ned

Happy you now have a reasonable date for the biopsy, Kelly. Aloha, Ned

Sounds all too familiar, cp. Welcome to the group! When the remaining tests are complete, let us know what treatment is planned. Best wishes and Aloha, Ned

With this sort of thing, overreacting is much better than underreacting! I second what Rochelle said -- tell your doc's receptionist that you're coughing up blood and get that appointment moved up. Then push for a CT scan. Actually, the persistent cough and shortness of breath are more concerning to me than coughing up a small amount of blood a few times as you described (I've never coughed up blood -- it was the coughing/wheezing and shortness of breath which led to my diagnosis). BUT, the receptionist would probably respond better to "coughing up blood," if you see what I mean. Best wishes and Aloha, Ned

Now that I've read my last message in the clear light of day, I see it needs some tweaking so it doesn't appear that I have a general bias against PET scans, which I don't. I've had two of them, both justified as being necessary to make treatment decisions, though the first didn't occur until I'd finished a full year of first-line treatment. Linda and Sandra explained the justification for their PET scans. One possibility I hadn't considered before is that your surgeon feels he needs a PET scan before doing the mediastinoscopy and/or bronchoscopy, perhaps to ensure he gets samples from the areas of greatest "uptake." My surgeon never expressed a need for PET data before doing my exploratory surgery, but now I'm starting to wonder if having that information would have enabled him to go immediately to the most active spots instead of wasting more than an hour on two sets of inconclusive samples via scope and then needing to move to a full thoracotomy. Would have saved money in the long run, though it wasn't coming out of my pocket (my pain was elsewhere). I've never read or heard anything that brought me to this line of reasoning, and I may be way off base, but there it is. I guess a question for the surgeon would be something like, "Do you need to see PET scan data before doing the mediastinoscopy and/or bronchoscopy?" If the answer is "yes," then the remaining issue is the timing. Your GP should be willing and able to bird-dog this for you. Aloha, Ned

I had a very raspy, and sometimes weak, voice after I'd been on Taxol/Carbo/Avastin for a while, and that continued for a few months into my Avastin only treatment (I think the Avastin just delayed the healing, but the Taxol/Carbo was the cause). In my case there was nothing pressing on the vocal cords or other noise-making apparatus -- it was more like general irritation of the throat, esophagus, etc. that also affected by eating. Voice is back to normal now. Aloha, Ned

That's great, Kristi. As Carole said, it's at least a start. To expand on what Katie and others have said, I'll repeat a suggestion I've seen in similar topic threads. Make a list of the various tasks that are weighing you down now, things that don't necessarily have to be done by you, but things that you'll have to do along with everything else if nobody else does them. Housecleaning, which seems to be in the process of being resolved, would be one of them. Others could be going to the store for groceries, picking up prescriptions, getting a small appliance fixed, bringing dinner, any number of things which are not such a big deal by themselves but can be that last straw to someone overwhelmed. Then when someone, family or otherwise, says the routine "let me know whenever I can do something to help," you're ready to say, "oh, yes, there is something..." Never let an offer of help go unaccepted! Of course, you may find that some offers are not genuine, but it's just as well you know that now as later... Aloha, Ned

Kelly, here's something else to throw into the mix (recent cancergrace.org discussions bring out some of these points, and I had a rather similar conversation in late 2006 with my own oncologist). Let's create three scenarios: Scenario A. The surgeon's initial impression was correct, you do have locally advanced cancer, and the cell type has been determined by a procedure such as mediastinoscopy and/or bronchoscopy. Because of the location and extent of the malignancy, surgery is not recommended. In that case, what would be the next logical step? Probably chemo. Scenario B. You get a PET scan sometime this month, and it indicates no suspicious areas outside of the chest. You then get the mediastinoscopy and/or bronchoscopy, it confirms a particular type of lung cancer, and surgery is not recommended. What would be the next step here? Probably chemo. Scenario C. You get a PET scan sometime this month, and it DOES show a suspicious area, perhaps in a bone or the liver or some other common site for lung cancer mets (realize that things other than cancer can cause a PET scan to light up). You then get the mediastinoscopy and/or bronchoscopy, and it confirms a particular type of lung cancer. What would be the next step in this case? Probably chemo. You can see where I'm heading with this. Although a PET scan will show metabolic activity which can't be seen on a CT scan, and is a valuable tool, it's not diagnostic in and of itself -- you still need that tissue sample to determine cell type and the proper treatment. So the question comes down to this: in any of these scenarios, or any others that can be imagined, will the information from a PET scan have any bearing on the initial treatment you are given? If "yes," I stand ready to be educated. If "no," and getting the PET scan is what's pushing the mediastinoscopy/bronchoscopy so far into the future, then why do it now? I realize I'm way over my pay grade here, but that's happened before, and I think these are questions that you should pursue. Hope you got a good night's rest. Aloha, Ned

Kelly: I most definitely agree with Linda on this one. August is too long to wait for the biopsy and, if cancer is confirmed, for treatment to begin. If the surgeon is correct and you do have locally advanced cancer, that would probably be stage 3, and you wouldn't want it to cross the line and become metastatic if at all possible. Please do post a question at cancergrace.org. In addition to Dr. West, who is in Seattle, there's a Vancouver oncologist/lung cancer specialist (Dr. Janessa Laskin) who is active on the GRACE faculty and frequently answers questions online. She would be in a good position to comment on the sequence of events as presently scheduled. Aloha, Ned

I'm sending you a PM with my email address. If you'll send me the photo attached to an email, I'll resize it as an avatar photo and send it back for you to insert. Ned

Hi, welcome to the LCSC, the best group anybody ever joined that nobody ever wanted to join in the first place. You'll have a hectic few weeks just ahead, but when you find out what you're dealing with and get a treatment plan in place, things will settle down. Most likely you won't need to "request" a specialist, as this will happen naturally as events unfold. Your biopsy will probably be handled by a pulmonologist (lung specialist) or thoracic (chest) surgeon, depending on its location. If cancer is confirmed, you'll be referred to an oncologist. The PET scan will determine if any other suspicious areas exist, and at some point you may get a brain scan (usually an MRI). What symptoms/problems led to your getting the CT scan? A 9 millimeter nodule is quite small, so hopefully whatever it is was caught early. Mine was almost 4 centimeters (40 millimeters) at diagnosis, accompanied by a large pleural effusion (fluid in the pleural space between the lung and the chest wall) and shortness of breath, but I'm still here and doing well after 20 months. You should be getting plenty more responses from other members, some of whom may have beat me to the "Submit" button. Best wishes and Aloha, Ned

Renate, please don't take that as the absolute truth. Doctors, even the best of them, simply don't know for sure, and some may give you the most pessimistic outlook so people don't get their hopes up too high and then blame the doctor if little improvement is seen. I'm 72, and my nerve endings DID repair themselves, though it took several months for the tingling to disappear completely. My feet are still a little numb (I can't tell if I have socks on unless I look), but they've been like that for years and not the result of chemo. I think there's a chance you WILL see improvement in the coming months, first in the random stabbing pain that causes loss of leg muscle control, then later in the general tingling and numbness -- but only IF you don't have any more Taxol. Excuse me for being so blunt here, but I'm surprised your oncologist had you continue on Taxol when you were already experiencing neuropathy as early as the first cycle. Aloha, Ned

Mary, I think someone mentioned this before, but it's worth repeating. If your husband is having trouble with Ensure, try Carnation Instant Breakfast. There are a number of flavors available (including a variety pack which I preferred). Consists of packets of powder which are stirred into a beverage of your choice -- whole milk, 2% milk, soy milk, even milkshakes. Really quite delicious, and many people prefer it to Ensure. Did your husband have the sore mouth immediately upon starting recovery from surgery? I had a rather sore throat for about 10 days, and the surgeon said it was caused by the tube in my throat while I was under anesthesia. Maybe his gums got irritated, perhaps by his biting down (unconsciously, of course) on the tube. Just a thought. Aloha, Ned

Cathy: I took some screen shots of what you should be seeing, so compare with what you ARE seeing and maybe we can figure out the problem (unless it's something to do with your account, then KatieB might be able to help as Randy said). When you first log in you'll see the list of all the forums, like this partial view: Scroll down, put your cursor on Ask the Experts (the cursor will turn into a pointing hand where I have the black arrow): Click, and you'll see this: Note that this forum is LOCKED, meaning you can't ask any questions here. If you like, you can read some previous posts, especially the live chat logs with Dr. West. But for questions, go to cancergrace.org, register (most of us have the same unsernames there as here), and ask your questions in the Forums section. Now go back to the LCSC forum index and scroll down to Technical Support / How To Use This Forum: Click on that, and it will take you here: To ask a question, click on New Topic and proceed from there, or to read posts in existing topics, scroll down and click on a topic: That will take you here. You can scroll down to read all the posts, then if you like, click the Post Reply button and add your own comments. Also, note that clicking on one of the category headings like Lung Cancer Q & A, Discussion Forums, etc., does nothing but collapse the display of all the categories except the one that you've clicked on (merely a space-saving technique). Perhaps that was part of your confusion. Best wishes and Aloha, Ned

It's reassuring to know that some of our tax dollars have been well spent! Aloha, Ned

Any forum would be the right forum. It's a marvelous story. Ned

Tracy, your headline made my morning!! Aloha, Ned