recce101

Hi, Alyssa, welcome to the group. I agree with Christine that your mom (or you on her behalf) should get and keep copies of all her written reports — surgeries (if any), biopsies, scans, etc. And I definitely side with the approach of your cancer doctor (oncologist). Your mom may respond very well to chemo, and the picture may look a lot brighter in a few months. Once she begins treatment, the oncologist will be in charge of her care, and she may have little need to see the lung doctor (pulmonologist). My pulmonologist is a nice guy, but I've seen him only twice — back in 2006 when I was being diagnosed — while I've seen my oncologist or one of his associates every 3 or 4 weeks for the past 28 months. There appears to be a discrepancy in part of the information you received. The numbered stages (such as your mom's IIIb) are associated with non-small cell lung cancer (NSCLC), not small cell lung cancer (SCLC). It does make a difference in the treatment given. I started my cancer journey much like your mom, short of breath with a large collection of fluid between the lung and the chest wall (pleural effusion), and the same IIIb staging. If you're interested in the details, follow the link below. Best wishes and Aloha, Ned

Wishing you great results, Rob. Aloha, Ned

Hi, Rose, welcome to the group. How are you feeling, and what treatment are you on for the NSCLC? Best wishes and Aloha, Nede

Very nice! What program did you use to make the transitions? Ned

Kelley: In her response, Judy mentioned GRACE (Global Resource for Advancing Cancer Education — cancergrace.org), an exceptionally valuable resource where I spend as much time as here. GRACE covers only lung cancer at the present time, so I was not surprised that I couldn't find anything on extrapulmonary small cell there. But since, as you say, there is a lot of similarity between your uncle's condition and extensive disease small cell lung cancer (SCLC-ED), here is one article in Dr. West's "what I really do" series... http://cancergrace.org/lung/2008/09/05/wird-ed-sclc/ ...and there are a number of Q&A threads in the SCLC section of the GRACE Forums: http://cancergrace.org/forums/index.php?board=44.0 I'm sure Dr. West would do his best to answer your question even though his main areas of expertise are lung and prostate cancer, and if I see your question before he does I'll tell him by PM that Judy and I sent you. Aloha, Ned

Hi, Kelley, welcome to the group. I doubt if you'll find anyone here with much knowledge of extrapulmonary small cell carcinoma since it's a relatively rare condition and doesn't involve the lung (hence "extrapulmonary"). But I believe your main question has to do with emotional support for your uncle, and I'm sure there are members here who can help you with that. People who have been diagnosed with a life-threatening disease react in a wide variety of ways, and what helps one person may not help another. Some become visibly distraught, some accept it as one more challenge, some become angry and resolve to fight, some withdraw into themselves, etc., etc. With your uncle, I can only guess that he's open to you because you're reacting in a way that he sees as helpful, while others may dismiss his situation with "you'll be fine" or try to avoid the subject altogether. My best wishes and Aloha, Ned

It's cancergrace.ORG, not com, in case that's what you were trying. I was just on the site. Ned

Hi, Vitis, welcome to the group. We patients always want things to move faster, but in your case the doctors probably have a good reason for the delay. Here's my guess (but it's only a guess, since I'm just another patient like you): Since the lesion below your ear showed activity on the PET scan, they probably want a conclusive biopsy to confirm that it is not related to the adenocarcinoma in your lung. Uptake on a PET scan does not definitely indicate cancer — it could be inflammation or something else causing metabolic activity. If it turns out to be something like inflammation, they'll have greater confidence that your stage Ia diagnosis is correct and that removing the affected lobe of your right lung will give you a good shot at a cure (no evidence of disease for 5 consecutive years). May I suggest that you post this same question in the forums section of cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). The site has a wealth of information, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Hey — when I checked my preview I saw Judy had already suggested cancergrace.org. Well, it's a good suggestion! Best wishes and Aloha, Ned

It's good that the doctor won't give her a prognosis with a specific number, because nobody knows. The statistics figures you hear thrown around or even published are just historical averages/means for a very large number of patients with a similar diagnosis, and there's a great amount of variation from one side of that group to the other. We have members here who were given a prognosis of just a few months several years ago. Aloha, Ned

That's very typical, and in these cases, as you say, everything falls on you. At the same time, you'll frequently hear friends and neighbors say, "Oh, if I can do anything, just let me know," and it stops there. Some people will do thoughtful things on their own initiative, but not many. You might try this: Make a list of things that need to be done, but don't have to be done by you personally, and carry it with you. Then when someone makes what you think is a sincere offer to help, pull out that list and say, "You know, there is one thing..." Just a few of these will really lift your spirits. Do you know what specific type of lung cancer your mom has? My first line treatment also included Taxol, and I can attest that it's a challenging chemo. My peripheral neuropathy (numbness and tingling in feet and hands) resolved after a few months with the help of Neurontin. Look through some of the profiles in the lower part of the messages here, and also browse the My Story and LC Survivor forums. Ask any and all questions that come to mind, and someone here will be sure to have first-hand experience with the same issue. Best wishes and Aloha, Ned

We know exactly what you mean. Friends and family often just don't "get it" — and really, we can't always expect them to. Some of them probably have issues that you and I don't understand, because we haven't walked in their shoes, and neither have they walked in ours. Here you can celebrate, grieve, question, vent, even laugh, and you will never be hassled, patronized, or ignored. Then sooner than you think, you'll be able to offer support to an even newer member, and you'll both be strengthened as a result. I hope you all have a restful night. Ned

Hi, welcome to the group. Having mets to the brain sounds bad, but can often be treated quite effectively. Recovery from the WBR and tapering off from the steroids will take some time, but once that's done there's a good chance she won't have any further problems there. Aside from the neurological symptoms (headache, confusion), how is your mom feeling? If she's had a PET scan (or at least a bone scan) and there's no evidence of mets anywhere else, that's encouraging. Her lung tumor(s) may respond well to chemo, and you may be pleasantly surprised how well she tolerates it. Because of the "pre-meds" that are now routinely given before each chemo session, supplemented with take-home medications, nausea is not nearly as common as it once was. Chemo is no fun, and practically everyone experiences fatigue to some degree, but many people sail through those months without being seriously debilitated, bedbound, or unable to do productive things every day. Please don't get hung up over the curable/incurable issue. The word "cure" has a specific meaning in cancer: no evidence of disease for 5 consecutive years. While stages IV and IIIb are currently considered incurable, it's becoming possible to treat these conditions on a long-term basis, similar to other chronic conditions that many of us have. You can get some perspective from the profiles that appear at the bottom of most of our messages, as well as the posts in the My Story and LC Survivors forums. Best wishes and Aloha, Ned

That's my situation too with the radiologist's written reports. However, I've found that the imaging centers I use are very willing to burn a CD of that day's scan which I can take with me when I leave. The first time I asked for this, they also made CDs of the two preceding scans done at that center. When I get home, I can look at the new scan side-by-side with the images that had received previous written comment. At least that gives me something to do in the days before my onc appointment, and so far the only surprises have been in areas that hadn't been commented on before. Okay, color me weird. Ned

Carole, it was really a lift to read your post. As I've said before, you're amazing! I'd love to attend your inauguration open house, but it would have to be as a "virtual" visitor, and I'll bet that goes for lots of other members too. How about meeting on LCSC live chat at the appointed time? Maybe one of your techie friends can port your computer display to a big TV for the benefit of your non-virtual guests! Aloha, Ned

Sandy, if I didn't welcome you before, my apologies, and welcome! When you find out, let us know the specific type of lung cancer (if that's confirmed), whether or not it's spread outside of the chest, and what treatments are being suggested. Those details will ring lots of bells around here and get you some tailor-made information. Best wishes and Aloha to you all, Ned

And thank YOU, Jude, for the love and support you gave our dear friend Don during these difficult years. Much Aloha to you and your family. Ned

Happy Anniversary, Ellen — you're a winner! Aloha, Ned

Amanda, I know it was difficult for you to write this message, and I deeply appreciate your informing us so promptly. Your dad was one of the first people to welcome me into the group in September 2006, and he has been a pillar of strength and stability to so many of us here. His messages yield some hints about his philosophy of life, so yes, I'm pretty sure that was a smile you saw on his face. My fondest Aloha, Ned

I'm not as senior as some in this exemplary group, but I'm more senior than I ever thought I'd have a chance to be when I first joined! I'll drop by the pub as soon as I finish waking up — Aloha till then. Ned

Love it!! Ned

Maggie, here are some messages on another site regarding excessive mucous and some things that helped: http://www.cancercompass.com/message-bo ... 2735,0.htm We had one of those suction machines at home when my wife was end-of-life caregiver for her father about 12 years ago. He didn't have cancer, but did have a major problem with aspiration, resulting in pneumonia on a number of occasions. In his case, the machine was prescribed by his doctor and covered by Medicare. Ned

How did I miss this GREAT NEWS!!?? Happy New Year Aloha, Ned

Well, to be perfectly honest, I did quite a bit of editing in Windows Movie Maker to arrive at this little video. On about 2/3 of the "raw footage" she opted to lie down in the shade with the ball instead of bringing it to me. Ned

Maggie, one other thought concerning the anxiety. Is your BIL on supplemental oxygen now? Since he was on a ventilator in the hospital for a while, it seems likely that his lung function is compromised and he may feel short of breath even now. It's one thing to be short of breath when walking — you can always stop and rest for a while. But if you're short of breath in bed doing essentially nothing, that can be terrifying, as I'm sure you can imagine. Or if he is on oxygen currently, maybe the flow needs to be increased. Do you have a means of checking his oxygen saturation? (It's typically measured with a little gadget clipped to a finger.) Ned

Maggie, first let me say BLESS YOU for being such a wonderful sister and sister-in-law. I'm overwhelmed just reading your message. Has your BIL been off treatment for a while? Is there still any contact with the oncologist who has been treating him? Mucous is rather common, and the doctor should be able to prescribe or suggest something that will help. It's good that he's able to cough it up, but I can understand his fear of aspirating in his sleep. It might be helpful to keep the head of his bed somewhat elevated at all times. I'm sorry I can't help with the anxiety problem, but perhaps others can. Getting hospice involved will be a tremendous help, and I hope they can get started very soon. Aloha, Ned