recce101

Gracie, I received a diagnosis much like your sister's over 18 months ago and I'm in better condition now than I was back then. Don't let the "inoperable" part cause you a lot of distress, or even "incurable" if that word is ever used. Being told that something is incurable doesn't make it so. In cancer, it's considered proper to use the word "cured" when someone has been cancer-free (no evidence of disease, the "other NED" I'm hoping to meet some day) for 5 consecutive years. We have a number of members who were declared incurable at one time who today meet that standard, and even if they don't choose to describe themselves as cured for one reason or another, they essentially are. Regardless of whether a person ever qualifies for the "cured" label, we're getting to the point where lung cancer can often be managed as a chronic disease on a long-term basis or even indefinitely. Aloha, Ned

That rings some more bells! Though my taste buds have mostly recovered from the ravages of last year's taxol/carboplatin, and the Tarceva rash-like feeling in my mouth has almost disappeared, for the first time in at least 20 years I find myself reaching for the salt shaker! The whole family looks at me sort of funny, as we all long ago became acclimated to much less salt in our cooking, but I counter that I will not be deterred as long as I have the best blood pressure readings in the household. Also, the heartburn/acid reflux that started last year became worse on Tarceva, and in searching for things to eliminate I decided coffee was a good target, since from a previous effort I was already down to just one cup a day (in the morning) and I wasn't really enjoying it much anymore. I expected bad withdrawal headaches like I had during the previous attempt to completely eliminate caffeine, but I substituted water or juice and was surprised that I had no ill effects from cutting out that last cup of coffee. In fact, and this was a REAL surprise, since doing that (2 or 3 months ago) I have had ZERO headaches -- and for the previous 50-plus years I'd awakened with at least a mild headache a couple of days a week. The bad news is, quitting coffee didn't completely eliminate the heartburn, and I had to cut out tomatoes too. Aloha, Ned

Even if you get luckier still, I hope you'll stick around. We need as much good news as we can get! And I agree with you on Dr. West. What a guy! Aloha, Ned

About the "paper cuts" -- I've only had them on the fingertips, and that was bad enough, combined with very sore inflammation in all the skin folds around the nails. The single most effective thing has been flurandrenolide tape (brand name Cordran Tape), which does a very nice job removing the soreness and irritation. The only problem is, the medicated tape also makes the skin rather thin, fragile, and susceptible to further damage when the tape is off. My dermatologist recommended an OTC shielding lotion called Gloves In A Bottle for use when the tape is not applied -- this binds with the upper layer of skin and prevents the lower layers from drying out, gradually making the skin more resistant to damage. It's a real battle, but as of this week (I've been on Tarceva for over 6 months) my fingers are ALMOST okay. I'm keeping my toes (in fact, everything) well lubricated with Cetaphil lotion, which helps quite a bit. The general rash is no longer much of a problem. About the mouth problems, there was a period about a month into my Tarceva experience when I felt the rash was not only on my skin, but also on the roof of the mouth and tongue. It wasn't quite the same as the irritated mouth and GI tract caused by the taxol/carbo, it was more of a reaction to certain substances rather than texture. That's steadily improved, and now I can eat things that are mildly spicy. There are still some toothpastes that I can't handle and occasionally a sausage that doesn't bother anyone else goes into my napkin very fast. Back in my taxol days I drank 3 cans of 350-calorie Ensure to keep up my weight, also lots of ice cream and milkshakes. For the rash, look at this program which was mentioned on OncTalk. The tape was recommended by the dermatologist on the panel: http://www.cmediscovery.com/EGFR/index.html Best wishes to your sister with my Aloha, Ned

Hey, Ernie, looks like great fun -- and no evidence of a ground loop! I've never flown a tail-dragger, and always wondered if directional control on landing and taxiing was as critical as I'd heard. Guess it depends on the crosswind component and how ham-footed one happens to be. Aloha, Ned

Very well said, Carole! Aloha, Ned

Barb, it's not always easy to tell which island is which from ground level, but I had a couple of clues. First, the trees were shaped and leaning from years of exposure to the prevailing northeast tradewinds (from over your right shoulder in this case), and the only place on Maui where you can be facing the ocean and have the tradewinds coming from that direction is somewhere on the west end. So the most likely choice was Molokai, though if you'd turned some to the left you could be looking at Lanai. But the clincher was the little satellite island (more like a big rock) just to the right of the island in question (look straight above the first zero in your date stamp). Molokai has one of those, Lanai doesn't. But I have an unfair advantage. I flew for a commuter airline for several years after "graduating" from the Air Force and have passed those landmarks thousands of times: http://lchelp.org/l_community/viewtopic ... 902#333902 Aloha, Ned

I developed considerable SOB during my 5th and 6th taxol/carbo/avastin cycles. Since the scans were improving, the pleural effusion was reducing, the blood counts and blood pressure readings were good, and the lung sounds were getting better, my onc concluded that it very possibly was from the cumulative effect of chemo. Hank's emphysema may complicate the picture. Aloha, Ned

Nice photo! Looks as if the tradewinds were doing their thing that day. Is that the east end of Molokai in the distance? Aloha, Ned

Hi, Deb, thanks for the update. Sounds like your husband's chemo experience has been pretty much "textbook" so far. The drowsiness throughout the infusion was due to the Benadryl premed. During my first infusion, as the chemo nurse was hanging the first IV bags, she said, "Okay, Ned, this one is Benadryl. You'll feel sleepy and slur your words." I sort of shrugged it off, then in a few minutes she asked me a question from across the room which required an audible answer, and everyone got a nice chuckle. After I finished the 6 taxol/carboplatin cycles and started receiving only Avastin, I requested (and the onc agreed) to stop giving the Benadryl, so my Avastin sessions over the next 8 months were quite speedy without any drowsies or other effects, and I usually forgot I'd had a treatment until I saw the band-aid over my port when I started my shower that evening. I agree with Patti that the injection he's receiving today is probably Neulasta, to prevent the white blood cell count from getting too low. Some docs don't give it unless the count has already become low, but my onc (and apparently your husband's) gave it automatically the day after chemo, and all my blood counts stayed in the normal range throughout my treatment. The first couple of times I had noticeable bone aches from the injection, but very little effect in cycles 3 thru 6. The steroid premed from the previous day is wearing off about the time the Neulasta is given, so that adds to the fatigue you'll probably see tonight. I also agree -- forcefully agree! -- with Patti's advice on constipation. Prevent it from even starting if you can, which in my humble-but-been-there opinion means overcompensating if that's what it takes. Better a little loose than all plugged up. Stool softener at night and prunes in the morning did the trick for me for the most part, with milk of magnesia needed only a couple of times. It's time to head down the hill for my monthly port flush. Aloha, Ned

Bronchioloalveolar carcinoma (now you know why it's called BAC!). It's a fairly uncommon form of NSCLC, sometimes considered a relative of adenocarcinoma (the most common subtype of NSCLC), and sometimes very slow growing. More info: http://onctalk.com/category/lung-cancer ... inoma-bac/ Here's a good OncTalk article on that: http://onctalk.com/2007/03/20/tumor-gra ... -in-nsclc/ Can you tell that I think OncTalk is a great resource? Aloha, Ned

Yes and yes! When I'm getting prepped for a CT scan I tell the technician I'd like a CD, and it's given to me a few minutes after the scan is done. On my last visit they also made me a CD of a scan I had there several months earlier. For PET scans, I tell the receptionist -- those are at a different facility which has a slightly different setup. Then when I see the oncologist a few days later to discuss the scans, I ask him for a copy of the radiologist's report. There's never been any hesitation, charge, or special authorization required for any of these. Aloha, Ned

And thank YOU for BEING here -- love your attitude. Best wishes and Aloha from another IIIb, Ned

Hi, Deb, welcome to the group. That's the same chemo regimen I started with in October 2006. Some call it the "gold standard" first-line treatment for lung cancer. I had 6 cycles of that combo with good results over the next 4 months, then continued on Avastin alone for another 8 months. By the end of that period the cancer had started to grow again, but it was still smaller than it had been 12 months earlier, and I switched to Tarceva (the pill) in October 2007. Still on Tarceva, still stable. Let us know how it goes with the infusion and then the side effects which will start after a couple of days. There are so many of us here who have had those same drugs that we can give you a good idea whether something is typical (and what to do about it) or unusual (and therefore calling the onc is advised). Post every day or two if you can, and let's get your husband off to a good start. Aloha, Ned

Thanks for posting the article, Barbara. Good palliative care not only increases a person's quality of life, it also enables one to direct more positive energy toward building up the body's own natural defense against threats such as cancer. It's encouraging to see the semantics police riding to the rescue! Aloha, Ned

Hi, Jackie, welcome! Here's a link to the topic thread SandraL started on IIIa and IIIb members: http://lchelp.org/l_community/viewtopic ... highlight= Give us some more details about your condition, treatments, etc., preferably in a profile at the bottom of your messages -- saves a LOT of typing in the future! Aloha, Ned

But when do we see a picture of Denise? Aloha, Ned

A similar question came up in the OncTalk forums last year. This was my input (with some edits to make it clear this happened over a year ago): My eyesight remains essentially the same as before chemo. Here's the entire OncTalk thread: http://onctalk.com/bbPress/topic.php?id=344&replies=15# Aloha, Ned

That's great news, Dave -- CONGRATULATIONS!! Aloha, Ned

ICE CREAM?? Did somebody say ICE CREAM?? Aloha, Ned

Gail, you'll probably get used to it before he does. The reason? You see him many more times a day than he sees himself, which is just when he happens to look in a mirror. Long after others in the family had stopped commenting (about 2 days) I would walk into the bathroom and think "Whoah -- who is this guy?!" Aloha, Ned

What a great bit of news to read first thing on a Saturday morning -- so happy for you!! Aloha, Ned

No danger of that around here, Wendy, just a big welcome to the LCSC! I agree, your mom is one tough cookie, and you don't sound especially flimsy yourself. We could use more proactive advocates like you. Best wishes and Aloha, Ned

Hi, Chris, welcome to the best place on the net for lung cancer support. When you get a chance, you might give us some more details on your husband, such as any symptoms that led up to his seeking medical evaluation. To avoid the need for a lot of repetitive typing in the future, it's best to put that sort of chronological info in a profile like you see at the bottom of our messages. Here's how: Click on My Profile above, scroll down to the Signature block, enter/update your information, scroll down further, ensure Always attach my signature is marked Yes, and click Submit at the very bottom. From now on, your profile will attach to every message you send. Best wishes and Aloha, Ned

Congratulations to you both! Aloha, Ned