recce101

Hi, BGK, thanks for the additional information. I won't try to kid you — stage IV lung cancer is not a good thing to have, and the statistics are not very encouraging. BUT...you and your mom should keep in mind that any survival numbers you may hear are simply averages/means for a very large group of patients who received a similar diagnosis in the past, and there is a great deal of variation from one side of that group to the other. Any such numbers have little relevance for any individual patient. To bear that out, if you browse through the My Story or LC Survivors forums or read the profiles at the bottom of the messages in any of the forums, you'll find a good number of members who are still doing pretty well years after receiving their own stage IV diagnosis. A couple of random points: Although the squamous form of NSCLC is the one most associated with smoking, you don't absolutely know that smoking is what caused your mom's cancer. It could have been radon, genetic factors, various other pollutants, or causes that haven't yet been discovered. It's wise and good that you're not "harping" on the smoking angle, but she may be providing her own guilt trip and unnecessarily adding more stress to the situation. Of course it's best if she can stop, since smoking is believed to reduce the effectiveness of some chemos, but some people simply can't, not because they're weak, but because it can be incredibly addictive. I guess I'm one of the lucky ones, since I was able to quit smoking in my late 20s without too much difficulty — but maybe I wasn't so lucky after all, since I got stage IIIb adenocarcinoma 43 years after I quit! To complete the picture, I should say that two members of my immediate family smoke, but they know the facts, they do it in the far corner of the back yard, and I don't hassle them. Well-meaning friends and relatives will give you all sorts of "information" like this, including the idea that sugar should be avoided, or that various supplements will prevent or cure cancer. There's some authoritative discussion on these issues at cancergrace.org (GRACE, Global Resource for Advancing Cancer Education), a marvelous resource headed by a medical oncologist and lung cancer expert in Seattle. Here is one quote from Dr. West: In addition, you should check with your mom's oncologist before adding any type of supplement to her diet. Some supplements may actually interfere with certain chemo treatments. Best wishes and Aloha, Ned

Hi, Tova, it's good to hear from you and see those beautiful faces once again. I'm probably one of those you remember from when you were actively posting, and I had the Taxol/Carbo/Avastin regimen as my first line. I still have lots of detail about side effects in the link below. My side effects were probably about average overall, though they were weighted more towards skin problems and less toward the systemic blood count problems that some people have. I did have the Neulasta injection (to boost white blood cell counts) automatically the day after each of the 6 Taxol/Carbo infusions. Fatigue was the most predictable side effect, but it just meant more naps, and there was never a day that I was so wiped out that I couldn't do something productive. Best wishes and Aloha, Ned

Hi, and welcome. Can you describe in a bit more detail the pain you're feeling? Does it hurt when you take a deep breath, or when you move your body (twisting or bending), or when you touch certain areas, or something else? My surgery was not as extensive as yours (no lobe removed), although it did involve a 7-inch thoracotomy incision on the right side and a pleurodesis. I was able to breathe without discomfort within a few days after leaving the hospital, and by then the only pain med I needed most days was regular ibuprofen. For several months it was a challenge getting out of bed (I found it easier to sleep in a recliner) or getting up from the floor after doing exercises — anything involving a twisting motion. After about a year there was no more pain while twisting/bending, though I had to work through some stiffness, and the only pain was an occasional twinge from the incision at random times. Now, after 28 months, the only area of discomfort is a touchy/numb/weird-feeling area in the front under the right breast, which I'm told is probably referred pain from the nerves cut on that side. But I don't know how much of this is relevant to you since I didn't have a lot of cutting done on the inside, and from what I've read my recovery was fairly rapid compared to some. You should get some better answers soon. Aloha, Ned

I agree, it sounds like she may be especially sensitive to one or more of the medications. If you care to list them, someone may have a personal story to relate. And I also agree that a pharmacist would be the "go to" person to check for potential drug interactions. But glad the pleurodesis went well! Ned

Some people (myself included) find that ibuprofen is quite helpful for this type of pain, while Tylenol seems to do nothing, as you say. Are you able to take that? I've also seen reports, backed up by a radiation oncologist, that ibuprofen can be helpful for bone mets, even more so than some of the supposedly more powerful narcotic medications. Let's hope the next Neulasta shot will be easier to tolerate. I had 6 of them (3 weeks apart) during my Taxol/Carbo treatment a while back, and each one became a little easier, unlike some of the chemo side effects which got somewhat worse each time. Aloha, Ned

Hi, Jennifer, welcome. Many of us here know what you mean about the shock of your life, and IIIb seems to be a rather common initial diagnosis (that was mine too). Stage IIIb doesn't really say anything about how sick a person is or how large and well developed the tumor is, but whether the location of the tumor and any affected lymph nodes makes it likely that cancer cells have escaped into the bloodstream. If they have, then surgery cannot effect a cure and systemic chemo is needed. During my surgery it became obvious that was the case, so they cleaned things up as best they could and didn't proceed with a lobectomy (but it still took 4 hours). We have some members with stage IIIb who, after chemo, reached and have maintained the treasured NED (no evidence of disease) status. You'll probably be hearing from at least one of them soon. Best wishes and Aloha, The not-NED Ned

Hi, Diane. I was going to suggest that you visit cancergrace.org and perhaps post a question for Dr. West, but I see you've already been to the site. I didn't see your username there, so I'm guessing that you either registered with a different username or you haven't registered to ask a question yet. He's definitely the best source on BAC and a terrific guy. Best wishes and Aloha, Ned

Welcome to the group. It's encouraging that your dad's tumors seem to be shrinking. The radiation should help with the pain, though that usually takes a while, and in the interim he will be probably be rather dependent on pain medications. Let us know if you have any specific questions, and you're sure to find members here who have faced almost exactly the same situations. Best wishes and Aloha, Ned

I see it now — guess I was looking for a new thread. Here's the link: http://lungevity.org/l_community/viewto ... 957#380957 Wow! Left lung surgery in 1999, then right lung surgery in 2004, with chemo both times. The decision to have that second chemo I think was smart, although it gave you a rough time. But look at you now — amazing! If you create a profile to appear under all of your messages, you can include a link to your story there like I and others have done. Aloha, Ned

Hi, and welcome. I was going to put a link to your story here for everyone's benefit, but couldn't find it in either LC SURVIVORS or MY STORY. Maybe there was a techincal glitch and you'll need to re-submit. Looking forward to learning more about your journey. Aloha, Ned

Hi. I didn't see your question until today, so in case you haven't received a response yet, I'll make a stab at it. Yes, first line, second line, etc. refer to the first treatment regimen, second, etc. that a particular patient is given. Two different patients may have two different drug combinations given as first line for the same diagnosis. Some treatments do have specific FDA approval for use as first line or second line, but this does not prevent an oncologist from using an approved drug in a different manner — so-called "off label" use as described here: http://en.wikipedia.org/wiki/Off-label_use Since you've been reading on the GRACE site, you've probably seen Dr. West's comparisons of various treatment combinations, many of which have been shown to provide essentially identical results. In some cases, about the only difference is the type and perhaps severity of side effects. Oncologists tend to use the drugs with which they have the most experience unless there is something else that has been proven to be more effective. Definitely not a stupid question. Aloha, Ned

I know from reading here and in other forums that many patients have that problem coming off steroids. The typical solution is to increase the dose, then taper off more slowly. Some find they need to continue on a low dose indefinitely. Yes, call the doctor. Ned

That's a reasonable question, one that's been asked for as long as we've had jet engines. The answer usually given is that modern engines are designed to withstand the ingestion of most birds, and the presence of a screen or guard would probably increase the number of engine failures: 1. At a minimum, the screen would disrupt airflow to the engine, reducing thrust and efficiency. 2. Birds, trash, ice, etc. accumulating on the screen could further disrupt or even block airflow to the engine. 3. The screen itself could fail and be sucked into the engine. In my 30 years of flying (about 13,000 hours) I had only a couple of bird strikes that caused any damage (dents in the leading edge of the wing). I did hear about one fatality in a two-seat jet trainer — a large bird came through the windscreen and killed one of the pilots. Was I ever apprehensive? As a pilot, no, except when I was being shot at. As a passenger, usually, though I tried to not let it show. It's a good thing I live in a place where I like to be! Ned

Hi, Joanne. We love success stories around here — please keep reading and posting. Best wishes and Aloha, Ned

Hi, Stephanie, welcome to the group. Your terrific attitude will serve you well. If you haven't already, may I suggest you visit cancergrace.org — GRACE, Global Resource for Advancing Cancer Education. A lot of us are "dual citizens" and have the same usernames there as here. Aloha, Ned

I took gabapentin, the generic of Neurontin, for numbness and tingling (peripheral neuropathy) in the feet which was probably caused by Taxol. My onc insisted that I start with a very low dose (just one 100mg capsule per day), then when I had no apparent side effects (dizziness and drowsiness seem to be the most common) he had me increase to two capsules per day. Even that is less than the standard dosage, but it resolved my tingling within a few days. It took several months for the numbness to disappear. Ned

ELLEN !

Go get 'em, Becky! Ned

Hi again, Candy. You're a quick study, and you'll be a great advocate for your dad. LCSC excels at answering questions from the perspective of a patient or someone caring for or otherwise supporting a patient, but for more detailed medical questions (like why not surgery before chemo/radiation, or why a particular chemo combination), may I suggest that you visit 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. Aloha, Ned

Hi, Candy. There's a Glossary which contains a lot of acronyms in addition to other glossary-type information — see the link in the left column. And like Randy said, any that you don't find you can post here and someone will answer. Aloha from "the other" Ned.

I don't know that it's a blessing one way or the other. Most 11-year-olds are probably mature enough to deal with a grandparent's end-of-life in a positive way. If he's not going to be traveling to visit his granddad, you could provide enough details on the phone for your son to get the picture, and I believe he'd appreciate that, if not now, then later in his life. I think about my own grandparents a lot more today than I did as a kid — I guess I have more in common with them now. Even if your dad is getting beyond the point of talking much or responding in an obvious way, very likely he's still well aware of what's being done and said around him. If I'm fortunate enough to have my family nearby when I reach that stage, whether it's for cancer or something else, I'd love to hear them reminiscing about our lives together, the good times, the rough times, the funny events, even the embarrassing moments. What a joy that would be! Aloha, Ned

Congratulations and welcome! Please stick around and help us give some perspective to the others who join every week, many of whom are numb with shock as you can well understand. Aloha, Ned

That's great, Colleen — let's keep those good scans a-comin! Aloha, Ned

Okay, Alyssa, I'm starting to feel a lot better about this now. You too, huh? Ned

Thanks for the info. I've used Windows Movie Maker for videos, but not for still photos. It's a good program, and you can't beat the price! Ned