recce101

Hi, Missy, it's great to have you back! I certainly remember some of those conversations from the "early days" and wish you well as you continue to heal. Much Aloha, Ned

Gosh, Judy, I wish I could find something magic to say that would help you turn off that worry switch. It would be nice if the next scan could be moved up, but 9 weeks/2 months is probably about the minimum for being able to detect any changes, and as I read your post it was already moved up from the original 3 months. The only thing I might suggest is having another radiologist look at your most recent scan. Some of these guys go overboard with the CYA, as we've discussed before. In the meantime, try to concentrate on the positive trend your last few scans have shown and try to release all this other stuff. Not easy, but if you can do it, it will do you a world of good. Aloha, Ned

Accent? What accent? Oh, yeah, that one. But to others in Scotland you probably don't have an accent. I wonder how you'd think we sound, and would you be able to detect the difference between Texans, New Yorkers, etc.... Ned

Have y'all seen Eric's video? Not the one with the ladies — maybe that's coming next. So check out Eric's up-close-and-personal account of his lung cancer experience: http://livinghealthy.anniesland.ac.uk/?page_id=427 Ned

Sounds like quite a day, Eric. When do we see some photos??? Ned

That's very good news indeed! Aloha, Ned

Good show! I also answered your similar post on GRACE. Aloha, Ned

Beautiful letter, Candy. It's great hearing from you. Much Aloha, Ned

Good show on the scan, Eric! And yes, Dec. 7 is Pearl Harbor Day, which still gets a lot of attention in Hawaii. During last year's event some of the Navy survivors of the attack returned from the U.S. mainland and hosted a visit from a Japanese pilot who had participated in the raid. It's funny how these things happen. Very often, military people carry less resentment than other citizens, because they've been exposed to the horrors of war and know that decent young people can be caught up in these events through no fault of their own. Even today, some of my contemporaries, the ones who were unfortunate enough to be shot down and spend time as a POW in North Vietnam, visit Hanoi without any particular feeling of anger — though they'd probably love to get their hands on one or two individuals and still have no use for people like Jane Fonda. Ned

I think that's it. There may be something about the words "lung cancer" that your husband has trouble handling, and it's probably not necessary to force the issue. He knows he's sick, and if "non-hodgkins lymphoma" sounds a bit less threatening, so be it. The main thing is that you're on top of the situation and he's getting the proper treatment. Aloha, Ned

The termite tent is on our house, so here we are headed to our pet-friendly hotel in Waikiki. Killing time here at Kaka'ako Waterfront Park since it's too early to check into our room. At Ft. DeRussy Armed Forces Recreation Center in Waikiki, with our hotel in the background. The DoubleTree Alana Waikiki. Haven't been down to the beach yet. Maybe in the morning. Aloha, Ned

We're getting the house ready for termite tenting, so I'll be out of touch for a day or two. We should have Internet at our pet-friendly Waikiki hotel, but don't know how much time I'll have for posting. Probably not much. At my appointment yesterday, my onc (and the radiolist's report) confirmed that my nodules have shrunk 10-20 percent on fourth-line Navelbine, as I thought they had from looking at the images last week. This far along in the game, I'm pretty happy about that! Aloha, Ned

Hi, Ronnie, welcome to LCSC. Is your wife's "primary" cancer lung cancer, which has spread (metastasized) to the spine and adrenal gland? From your writeup, I'm assuming that's the case. The site of the primary cancer (where it started) determines the appropriate treatment, as the distant tumors retain the characteristics of the primary tumor and are generally responsive to the same drugs. What chemo drugs is she on? Those of us who have used the same ones may be able to help with side effects. Best wishes and Aloha, Ned

Hi, Barb, welcome to LCSC! Stage 3b/4 NSCLC (adenocarcinoma) was my diagnosis too, and that was in 2006. You can follow the link in the signature/profile area below to get an idea of what my journey has been like. Actually, I'm doing far better than I ever dreamed possible back then. You just never know. How is your dad feeling? If he's strong enough to tolerate the chemo treatments without a lot of interruptions for complications, he might do very well. Best wishes and Aloha, Ned

Hi, lbx, it's good to see you here at LCSC. This forum and the excellent medical info at GRACE pretty much cover all of our support needs. Your situation sounds something like what we went through with my dad back in the mid-90s. He and my mom were living in Texas, she passed away in 1995, and we convinced him to move to Hawaii to live near us. We leased him an apartment in a senior complex at couple of miles from our place. He was 84 at the time, and in good health except for early prostate cancer which was being handled in a "watch and wait" manner. He had some wonderful neighbors at the senior complex, went golfing a couple times a week, could still drive, etc. It was terrific to see him out and about and having fun after taking care of my mom for so long. He had two great years, then the prostate cancer started to progress, and in spite of treatment he went downhill rather fast. There was a period of a few weeks between the time he was still able to function independently and the time he was hospitalized when I found it necessary to spend nights at the apartment with him (our spare bedroom was occupied by my wife's mother). It was sad to see him steadily losing the independence he had treasured, though I'm sure deep down he realized it was necessary. If your dad responds well to treatment and doesn't have frequent complications arise, he can probably continue to live by himself for some time. I found Alimta to be quite tolerable after I got the constipation under control (daily use of stool softener and senna tablets). There was some fatigue for a few days after each treatment, but thankfully no nausea or adverse effects on taste or appetite. You would need to check on him daily, and it would be good if you could set up a routine where he stays at your place at times and, if space permits at his apartment, someone "camps out" there on occasion. Then when the time comes that he needs more help, staying at your place more often or even continuously won't seem to him like quite so big a step. I'm not saying it's going to be easy, and I think sooner or later your husband's view will be one that you share as well. Stay alert and don't depend on your dad to tell you when the time for more help has arrived. Most people find it difficult to make that determination for themselves. Blessings and Aloha, Ned

Judy in MI, your bird story is amazing, especially since the larger bird was a different species. We have a lot of bird activity in our back yard. My wife spreads birdseed every day and watches them along with our golden retriever, who just watches too and rarely bothers them. She (the wife, I mean) can identify the chirps by species, which is probably not that hard, but also has a feel for what they're trying to communicate to each other. The other day we were in the living room, she heard chirping, said "that's a danger call," and ran outside to see a cat on the wall (which the dog dutifully chased away). Much too frequently, baby birds who can't yet fly fall out of the nest, and she usually knows that from the chirps between baby and parents even before seeing it on the ground. On occasion she's been able to help get the baby back into the nest, but often the episode ends sadly. Sometimes the young bird is able to fly horizontally for a short distance but doesn't have the strength to fly back up into the tree, and we've seen cases where a parent is able to nudge the youngster up a slope to the wall, then along the wall to a low branch, then from one branch to another back to the nest. There's a lot of drama in that yard, and it was a revelation to me that all the chirping was not necessarily sounds of joyous springtime, but communication to accomplish tasks necessary to survival. Also, the parenting skills of some species are much better than those of others, and sometimes the coordination and sharing of duties between the male and female parents is quite remarkable. And Eric, hope you get that China trip! Ned

Best of luck to you (and your doc) in the study, Keli! Aloha, Ned

Hi, Robert, welcome to the group. Where do you stand (e.g., what's your status) on the molecular testing needed for the Pfizer trial? Do you already know that you have the ALK rearrangement, or is that testing something you're trying to get done? Best wishes and Aloha, Ned

Hi, Debbie, welcome to the group. You might be interested in reading this, where I tried to answer the same question for myself back in 2006: viewtopic.php?p=258836#p258836 We have many members who have had a lung removed and done very well. And as you're probably aware, the left lung is the smaller of the two (2 lobes instead of 3 to make room for the heart), so removing it would eliminate less than half of your current breathing capacity. It's definitely in your favor that your current condition ("performance status") is excellent. May I suggest that you also visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, 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, welcome to the group. Yes, we definitely understand. We have an amazing group here, a mixture of patients and family members and others affected by lung cancer in some way. It sounds as if your dad has done well with the treatments, but maybe the brain mets have returned. Is he on any treatment currently, and do you know the specific type of lung cancer? Your feelings are very normal, and I don't know that there's much you can do about it right now except take one day at a time. I hope some others who have been in your same exact situation can help more. Best wishes and Aloha, Ned

To paraphrase an old saying from the 60s, if it sounds good, do it! Judy, we haven't had the tenting getaway yet — that will be the 27th, and icing on the cake! Ned

Hi, everybody. Had a CT scan this morning. As some of you know, I always ask for a CD so I can look at the images when I get home and compare them to earlier scans, though I won't get the written report until I see my oncologist a few days later. For the most part I'm not too sure what I'm looking at, but if a particular image was mentioned in a previous written report, it's fairly simple to set up a side-by-side comparison of that image and the current equivalent. Today, for the first time since 2007, every nodule that was evident in the previous scan looks a little bit smaller! Of course there's always the chance that something has shown up somewhere else, and I probably wouldn't hear about that until next week, but having the existing nodules in both lungs shrink even a little is encouraging, considering that Navelbine is my fourth line therapy. That's especially welcome since I'm on a reduced dosage as well as a reduced schedule (2-weeks-on and 1-week-off vs. the original 3-weeks-on and 1-week-off), and I'm tolerating that regimen well, with the main side effect being low blood counts. So our family is taking this opportunity to celebrate, and even if I hear something less positive next week, at least we'll have had a few upbeat days! Ned

Hi, Chris, welcome to the group. Yes, SCLC can be a bear to treat, particularly if it has spread outside the chest, but that doesn't mean it's hopeless. Look around the membership here — there are a good number of SCLC survivor stories, so don't count yourself out yet. And next time you see that oncologist, just tell him that he's not going to get out of this world alive, either! Aloha, Ned

But what if they want to go the opposite direction — they have to walk backwards? Ned

I believe the costs of a Phase II study would be borne by its sponsor, and you or your insurance would be responsible only for any tests/procedures you would need whether you're in the study or not. I haven't participated in a cancer clinical trial, so others who have, please jump in to verify or correct what I've said... All of the treatment options you listed have been proven effective for adenocarcinoma. From my experience, I would say that Alimta (pemetrexed) has far fewer side effects than Taxol. It wasn't available to me when I started treatment in 2006, though I did receive it later. It caused some fatigue and a moderate amount of swelling here and there, but no adverse effects on my taste or appetite — a real blessing compared to Taxol. Ned