recce101

Sandra, another thought. If my theory holds, then as long as you stay in the northern hemisphere for your vacation (or whatever it is that you're traveling for), the relatively short days may minimize the effects of increased sun exposure. The shorter days are due to the sun being lower in the sky from our viewpoint, and the sun's rays are filtered through more miles of atmosphere, and that reduces their effect too. But if you're going to Australia for your sun, buy extra blocker — they make some good ones down there. Aloha, Ned

That's very close to what I felt that day in the hospital, and what I still feel. For me, it doesn't involve religion or faith, but I can fully appreciate that someone else could have the same thing happen and consider it a religious experience. At cancergrace.org (Dr. West's site) we had a fascinating discussion which starts here... http://cancergrace.org/forums/index.php ... 36#msg4036 ...and my contribution is here: http://cancergrace.org/forums/index.php ... 22#msg4122 You'll see some familiar names in the thread! Aloha, Ned

Some of this may be an overactive imagination combined with my tendency to overanalyze stuff, and I've been on Tarceva only 13 months with just one rotation through the seasons, but... Simply the length of the day (sunrise to sunset), even without much direct sun exposure, seems to influence the intensity of my side effects — rash and diarrhea in particular. After I got over the initial few months and had my countermeasures all in place, I had a few months of negligible problems. Then as summer approached and the days became longer, the side effects began to increase. Now, with shorter days, things are back in good control. It I'm able to stay on Tarceva several more months, it will be interesting to see if this pattern repeats. If I know I'm going to be in the sun for more than a few minutes, I use a sunblocker with zinc oxide. Otherwise I'll get a prickly sensation, sort of like getting in the sun with an existing sunburn. My photosensitivity is probably increased by the doxycycline. Aloha, Ned

That's great, Colleen — congratulations! Aloha, Ned

Hi, Reed, welcome to the group. It's hard to be positive when a loved one is slipping away, but the fact that your mom is in no pain is a blessing. Is she receiving hospice support? If you haven't discussed hospice options with her doctor, this would be a good time to ask. For someone being cared for at home, the visits by experienced hospice nurses can be exceedingly helpful to the family as well as to the patient. I second Katie's suggestion to visit cancergrace.org and ask Dr. West your questions on the nausea issue and anything else of concern. Though he can't give specific medical advice to a person who is not his patient, he has a knack for laying out all of the considerations in a clear and objective yet compassionate way. Not only is he an internationally recognized expert on lung cancer, he is committed to answering individual questions online within 24 hours, even on holidays and weekends. With Aloha, Ned

Hi, Karen: I absolutely agree with the others about not asking for prognosis statistics. It's not because you want to hide from the truth, but because any number that might be quoted is simply an average/mean for a very large group of people with a similar diagnosis in the past, and that number is essentially meaningless for any individual patient. One question you can ask is what subtype of NSCLC your mom has. The most common form of NSCLC is adenocarcinoma, next is squamous cell carcinoma, and least common is large cell carcinoma. The subtype has some bearing on the specific chemo drugs to be used, and that will help us answer any questions you may have about the treatment plan. Most imaging centers will provide the patient a CD of the day's exam upon request, and I recommend you take advantage of the offer. It takes only a few minutes, and these CDs will come in handy in the event of a second opinion sometime in the future. Likewise, you should ask the onc for copies of any written reports (scans, pathology, etc.) in your mom's file. Best wishes and Aloha, Ned

That's sounding good, Teri. Very happy for you. Aloha, Ned

Hi, Jackie, welcome. You don't ever need to apologize for a long, detailed post. It gives everyone more information to work with, which should get you better answers. You've got a lot on your plate, that's for sure. And while it's easier said than done, you need to keep reminding yourself that you simply must take care of your own health — for your mom, for yourself, and for the new life you're carrying. I agree with the others that nausea from chemo is not nearly the problem it used to be. They give "pre-meds" before each chemo treatment, either by IV or orally, which are very helpful, and your mom may also get a prescription to take at home. She should take this medication on schedule and not wait to see if nausea is going to occur. If it's possible to move up the visit with the radiation oncologist, that would probably be a good idea, for peace of mind if nothing else. The medical (chemo) oncologist should be able to help with that or with reassuring you that late November is soon enough. Although the tumor looked larger on the PET scan, PET images are not as clear as CT images, and it may not be possible to accurately compare dimensions. Best wishes and Aloha, Ned

Also, the specific chemo drugs to be used would be determined by the specific type of lung cancer that was found. Ned

Hi, Carl, welcome to the group. I think it was wise of you to ask this question, though I imagine you may not have expected the answers to be so one-sided. Here are a few comments from a 73-year-old: Yes, they got all of the visible cancer out, and the tissue around the edges tested free of cancer, but there is always the possibility that a few cancer cells had already entered the bloodstream as others have said. The purpose of chemo is to zap those cells, though there is not a 100% guarantee that they will all be eliminated. The idea that some cancer cells may have already entered the bloodstream is supported by this: If cancer was found in two widely separated areas, one needs to ask how it got from one place to the other. Did they both develop independently (possible but not likely), or did one start first then spread through the bloodstream to the other lobe? This tells me that having chemo would give you the best chance of avoiding or delaying recurrence, though, as we know, there are no guarantees. But (this is important too and maybe the overriding factor) — how good is your general health, and do you have any specific "must do" plans for the next year or so? Beyond that, do you place more importance on quality of life or on longevity? If you're feeling pretty good and have no other major health issues, there's a good chance you would tolerate chemo well with just temporary side effects that should be mostly resolved after a few months. On the other hand, if you also have COPD or heart issues or diabetes or some other significant medical problem, chemo might decrease your quality of life to an unacceptable degree. The bottom line is, there is no right answer for this, and regardless of what you decide, you should not later second-guess your decision or allow someone to tell you that you were wrong. If it's still a tossup for you, consider starting chemo to see how it goes, knowing you can always stop if the side effects become too unpleasant. Best of luck with whatever you decide, and Aloha, Ned

Hi, Kikie: Yours does sound like a very unusual case. If you haven't already, may I suggest that 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 are "dual citizens" and have the same usernames there as here. Dr. West has probably encountered other situations similar to yours, and while he can't give medical advice tailored specifically to you, he has a knack for laying out all the considerations in a balanced and helpful manner. Best wishes and Aloha, Ned

Diane: I got some relief from the tingling/numbness within a day after starting Neurontin (that's a faster than normal response according to my onc), but it took a couple of months for the tingling to disappear completely and even longer for the numbness. The only leg pains I attribute to neuropathy were shooting pains in the lower legs (calves, mainly) which felt like electric shocks. On occasion I've had cramps in the thighs, but they don't feel anything like that, and I figure they're from a different cause. If your dad's leg pains feel more like cramps than electric shocks, you might try Googling "leg cramps" or "muscle cramps" and see if any of the listed causes ring a bell. Insufficient potassium is one possibility. Ned

Diane: I had the dry eye effect while on Taxol/Carboplatin, as well as what could be called "dry nose" — constant watering/dripping but without adequate lubricant content, so the nostrils felt dry and fragile. I used lubricating eye drops for the eyes and Vaseline for the nostrils, which provided partial relief. With Tarceva I still need Vaseline for the nostrils, but the eyes have been okay, EXCEPT... Some people on Tarceva develop long, curly eyelashes, out of control to the point where they can curl back in and touch the eyeball. This gives the constant feeling of something in the eye, though nothing can be found. And with the eyes watering so much, it's difficult for the person with the problem to get a good view even with a magnifying mirror. So take a look at his eyes and see if that might be causing or contributing to the irritation. Some people on Tarceva need to trim their eyelashes regularly. Aloha, Ned

Diane: I almost missed your question since it was in a thread I had already responded to. Neurontin (gabapentin) was helpful for my neuropathy. I think Lyrica is "supposed" to be better — I'm pretty sure it's more expensive — but the two are probably different enough to make it worthwhile trying Neurontin. Aloha, Ned

Absolutely! We spent part of the evening at the house of a friend who was being reelected to the Hawaii state House of Representatives. After we got home and everyone else was asleep I watched CNN and MSNBC until after midnight (5 AM on the East Coast). As I told one of our members in a PM, I'm just incredibly grateful that I lived to see this day. And that's from someone who has on occasion (though not recently) voted Republican. Aloha, Ned

So glad Barack was able to spend time with her a few days ago — the doctors said she might not last till the election. She was quite a lady. Ned

Ah, the memories! Grits are not common in Hawaii — they use taste-free rice instead. Maybe I'll try to find some and surprise the family with a special breakfast one of these days. Grits with plenty of butter, along with eggs over-easy to mix with 'em. That was the subliminal message of the movie "True Grit." Ned

Yes, I voted last Wednesday after my onc appointment and port flush. Early voting was set up in a shopping center not far from the clinic, and there was just a short line. The rest of the family is voting Tuesday at our regular polling location, an elementary school within walking distance of our house. Then it's party time — I think! Ned

Priceless! Thanks, Judy. Ned

Yes, we certainly do. Welcome to the best place on the web for lung cancer support and first-hand coping tips. The LCSC has over 5500 registered members, and as a group we've truly seen it all. For more technical medical questions, I recommend 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 are "dual citizens" and have the same usernames there as here. By now, with the help of Sandra's link and other research, you've probably learned the answers to your initial questions on staging. The I thru !V staging system is used for most, but not all, types of cancer. In lung cancer, it applies to the subtypes within the non-small cell (NSCLC) category, the largest group. The other category, small cell lung cancer (SCLC), uses the terms "limited disease" (LD) and "extensive disease" (ED) instead of stages I thru IV. As you may have noticed, lung cancer stage III is further divided into IIIa and IIIb, and there are various combinations of factors which put a patient in one or the other. The assigned stage has no relationship to how "sick" a person seems to be upon diagnosis — someone can be feeling really lousy and be designated stage I or II, while another person might be feeling pretty good with no lung symptoms at all yet receive a lung cancer stage III or IV diagnosis as a consequence of being checked for a seemingly unrelated problem. Basically, the stage indicates how likely it is that cancer cells have escaped from the site where they initially grew (the primary tumor), entered the bloodstream, and traveled elsewhere in the body where they might in the future, if they haven't already, become established. Knowing this will help determine the most effective type of treatment (chemo and/or radiation) and whether or not surgery is appropriate. I was diagnosed with adenocarcinoma (a form of NSCLC) stage IIIb exactly 26 months ago today, and you can read my story using the link at the bottom. While there are some clouds on the horizon that may require me to change treatment in a couple or so months, I'm doing much better than I had reason to expect in the summer of 2006. Best wishes and Aloha, Ned

THEM — released in 1954, about common ants which mutated into giant man-eating monsters after the New Mexico atomic tests. It probably wouldn't be so scary now, but I was younger then and also wearing 3D glasses! Ned

Perhaps the PCP could call the onc, or at least write a note for you to take, explaining the measures he's started to get the BP under control. Ned

A great article — it hit all the points we're continually discussing. Thanks! Ned

Teri: When I read this, I got a small piece of the shock that I know has overwhelmed you. The idea of amputating a leg at first seemed abhorrent — we so want something in our lives that is still "whole." But after reading the other responses and thinking about the range of outcomes the vet mentioned, I believe that's the approach I would take. Mrs. Dickens is young enough to recover quickly, her lovable silliness will be intact, and she will probably adjust to her "new normal" with a speed we humans can only envy. Much Aloha, Ned

Ned and Rosie