recce101

Yep, cancer sure puts things into perspective, doesn't it? I can't answer for Bud, but I can for myself, and it would be: Because it's really neat to never wake up with a morning headache any more, unlike the previous 50 years when I woke up with one at least 2 or 3 days every week — and that included the year or so when I had quit drinking coffee and had just one with-caffeine diet Pepsi every afternoon. The winter of 2008-09 I switched to no-caffeine soda attempting to reduce the acid reflux problem I was having while on Tarceva, and bingo, the morning headaches stopped immediately. I was amazed, since it's hard to correlate those facts with typical caffeine withdrawal, so figure it might have been some hypersensitivity to caffeine which manifested itself in that way. Anyway, it's been well over 1-1/2 years since I've had one of those headaches or actually any kind of bothersome headache, so if they start again I'll know something else might be going on, and I think you know what I mean without my having to say it... Ned

Thanks, Christine, that's a very good program. We did have a discussion about it shortly after the program first aired. Aloha, Ned

Double dittos on the water. It also helps with constipation! Ned

I have those too! Sometimes once a month, sometimes every few days, sometimes not for several months. It's like somebody put a dab of black grease in one eye which blocks the vision of the lower half of that eye, but the edge is jagged, like it was cut by pinking shears, and not exactly horizontal but from upper left to lower right. The first time it happened, which was several years before I got cancer, I actually went to a mirror thinking something had gotten into the eye. The blockage slowly moves down in the field of vision and disappears within a few minutes. Several times I've mentioned it to my ophthalmologist (did I spell that right?), who I see every 4 months as a follow-up for glaucoma (which I've had for 35 years, thankfully with no vision loss). With his sophisticated equipment he doesn't see any problems which could be causing it, and chalks it up to optical migraine. As I learned a while back, migraine can cause all sorts of weird stuff and doesn't necessarily involve a headache. Ned

I had low white and red blood counts on Alimta + Carbo but never down to the "should definitely have a transfusion" point (HGB stayed above 8.0). Was offered a transfusion, but didn't take it, instead eliminated the Carbo portion. That helped a little, but the HGB didn't really come back until I finished Alimta and started a relatively low dose of Navelbine. Now my HGB is about 12.5, and I can really tell a difference. I also had the impression (including from others who've had one) that a transfusion would make an immediate difference. Guess it's an individual thing, like lots of stuff. Hope you're feeling stronger soon! Ned

Great photos! So this was a ride, not a race? I imagine the latter could get interesting in a hurry! Ned

One other thing. I just read the response by ts, and want you to know that I agree with everything she said. I think the main difference in our posts is one of focus and emphasis. Some good reading material: http://cancergrace.org/lung/2010/04/05/ ... ng-cancer/ http://cancergrace.org/lung/2010/04/16/ ... ced-nsclc/ http://cancergrace.org/lung/2010/08/22/ ... iii-nsclc/ Ned

If you mean the end of September, that does seem like a long time. If you haven't been to cancergrace.org yet, what you might do is gather up as much detail as you can (specific subtype of NSCLC, scan results, results of any molecular testing for EGFR mutation, recommendations of the local oncologist, how your dad is feeling right now, etc.) and post it for the GRACE docs to review. Of course they can't give actual medical advice to someone who's not their patient, but they can tell you whether the recommended treatment seems appropriate for your dad's situation and what other treatments might be considered. Unless there's some controversy over staging or whether surgery is an option (it's usually not with IIIb), there are a limited number of FDA-approved, evidence-based first-line treatments for NSCLC IIIb, and the difference between them has more to do with side effect profiles and individual oncologist preferences than with any measurable difference in outcomes. Later, when and if second-line or third-line treatments are being considered or the possibility of a clinical trial arises, there's more room for differing approaches and a second opinion might be useful then if it's not feasible to get one now. I'm not saying a second opinion should not be pursued now, only that the possible benefit (assuming your dad's case is a fairly straightforward IIIb) needs to be weighed against the resulting delay in starting treatment. If it wouldn't delay the start of treatment more than a couple or so weeks, then getting a second opinion now might be useful and provide some peace of mind. On your other question, whether treatment could be started locally and tweaked later based on the input of a lung cancer specialist, that's a good question for your local oncologist when you see him this week. You could also get his take on how long treatment might be safely delayed while getting other consultations. Most oncologists worth their salt encourage second opinions, but if he expresses concern about the resulting delay in treatment, I would consider that carefully. Hope to see you at GRACE! Aloha, Ned

Hi, Kristin, welcome to the group! What led to your dad's diagnosis, and how is he feeling? I started this cancer trip in August 2006, and actually I'm in better condition now than at any time in the past 4 years. You can read more than you ever wanted to know about my history by following the link in the signature area at the bottom of the message. You also might be interested in a rather unusual (I dreamed it up myself) graphical summary of my cancer experience — rotate the graph 90 degrees clockwise and zoom up to 100 percent: http://wvpress.com/grace/bvsev.pdf Since you're actively looking for info, may I suggest that you 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

My ringing in the ear(s), aka tinnitus, was brought on by Meniere's Disease, which started about 1995, over 10 years before I got cancer. Meniere's causes severe damage to the hearing and balance functions of the affected side, in my case the left side. Fortunately, the right side is still okay, and my brain has learned to disregard the faulty balance signals and rely on those from the good side, so I no longer have any serious balance issues or the spinning vertigo/nausea attacks which came on without warning at some very inconvenient times in the early years. But I'm essentially deaf on the left side, and the tinnitus is apparently generated by some part of the brain in response to the lack of valid sound signals from that side. It's known that the ringing does not necessarily come from the ear itself, although it sounds like it does, because it continues to exist and can get worse even if the auditory nerve is completely severed. When this first started, the tinnitus bothered me a lot, because I considered it a barometer as to the effectiveness or ineffectiveness of the varous drugs I was being given in an attempt to stop the damage (sometimes similar balance and hearing symptoms can be caused by a treatable condition like an inner ear virus or infection). But once I accepted the fact that my condition was incurable and that the hearing on the left side was truly gone, I relaxed psychologically and the tinnitus stopped bothering me. Today, the first time I noticed it was when I read this thread! But it's there 24/7, and is the pulsing type, so I can "hear every heartbeat," as it were. My pulse right now is about 105, and I get that number by comparing the pulse with my memories of a military marching band, which plays at a standard 120 beats per minute. Some people do find that a white noise device helps them sleep, but I've never been motivated to try one. More than you ever wanted to know, right? Ned

Angela, there are also many podcasts and articles on the GRACE website: http://cancergrace.org Aloha, Ned

Hi, Steff. Taxol+Carboplatin+Avastin is where I started, 4 years ago. Actually I'm feeling better than at any time since diagnosis, and the 4th line treatment I'm on now has been quite gentle for me. Check the link below if you want to know more. Aloha, Ned

I've been following your posts at GRACE. Congratulations to Teacher Wife on her "anniversary" — and I'll be looking for a similar announcement this time next year! Don't worry, this annual event will not crowd out any of your other yearly celebrations, just make them more meaningful. Best wishes and Aloha, Ned

Gee, I hesitate to post this after reading those lousy day reports, but I will anyway hoping some of this will rub off... Just got back from my 17th Navelbine infusion, with scan report in hand. A bit more tumor shrinkage in the right lung, left lung stable, abdomen and pelvic area still "unremarkable." Adding to that the fact that Navelbine has turned out to be more tolerable than any treatment I've had to date, I figure I'll be driving a while longer and can feel justified in going out shopping for some new wheels! Ned

Libby, I initially found it by entering "discovery cme" in a Google window. Maybe the same will work for you. Ned

If you've visited cancergrace.org recently, you've probably seen reference to the Discovery Channel CME program on NSCLC featuring Dr. West and two other lung cancer specialists. It aired for the first time this morning, and it's already available online at: http://discoveryhealthcme.discovery.com ... ogram.html or http://link.brightcove.com/services/pla ... 1390685001 Excellent program! Ned

Hi, welcome to the group! I just finished watching a Discovery Channel presentation on NSCLC featuring three lung cancer experts, one of which is Dr. West, who we mention often here. He's a Seattle oncologist and head of GRACE (Global Resource for Advancing Cancer Education — cancergrace.org). The program is also available online, and here are a couple of links: http://discoveryhealthcme.discovery.com ... ogram.html http://link.brightcove.com/services/pla ... 1390685001 Best wishes and Aloha, Ned

Becky said: What a great analogy! I'll have to tell my wife that one — she's very active in a local caregivers support group (but not because of me, yet...). Kim, about the surgery details and wondering about the ribs: I believe you said you have health care power of attorney or whatever the term is in your area, so you should be able to get a copy of the surgeon's post-surgery report, which will have all the details. Some of the terminology will be incomprehensible, but what was done about the ribs should be apparent. I've also been following your thread at GRACE. Best wishes and Aloha, Ned

Hi, KW Judy! Glad your Miralax routine is working for you — that's a major accomplishment, as you've been having trouble finding a balance for a good while. But since your nausea/gas/headache problems started before cancer ever came into the picture, then the return of those problems probably doesn't have any connection with cancer, except that the stress of long-term chemo may allow issues which have been lying just under the surface for a while to break through into the open. That happened to me with my longtime skin problems. For me, the main side effect of Alimta was random swelling here and there, right leg then left leg then cheeks (the ones on my face!) then left arm and back and forth. I was sent for ultrasound on three occasions looking for blood clots (negative) and for an echocardiogram looking for heart insufficiency (negative), and this persisted for the entire year I was on Alimta. Now that I'm off Alimta there's no more swelling except for what was already there before I got cancer. During my later months on Alimta I did start to get a slightly nauseated or out-of-sorts feeling 2 or 3 days after each infusion, but a Compazine tablet was always able to fix that within a half hour. About the headaches, how's your caffeine intake? I'm pretty sure I've told this story before, but bottom line, when I cut out caffeine completely (even switching to no-caffeine Pepsi for my daily soda) to reduce heartburn problems, the frequent morning headaches which have been part of my life forever suddenly went away. That was a total surprise, but a very welcome one. Aloha, Ned

Comparing today's scan with the one in May, I really don't see any appreciable differences. If anything, I could talk myself into thinking some of the nodules are slightly smaller or less distinct than before, and I didn't notice anything that looked worse, but then I was only looking at the lungs and don't have a clue about the adrenals, liver, etc. So I'll wait for the report next Tuesday before making any car decisions! Ned

Wow, everybody is so poetic and philosophical today! First on my agenda is another CT scan (last one was in May). I should have some idea what's going on when I get home and look at the CD, and that should help me make one personal decision: Does it look like I'll be driving long enough to justify shopping for a car to replace my 95 Subaru which after 15 reliable years has gone belly up? Lani is starting to get rather protective of her 2009 Hyundai... Ned

Great photos, Eric! Ned

Judy, with all the doctor visits you've had on this problem I have to assume that your potassium levels were checked (and are continuing to be monitored), but you should make sure. The banana suggestion is fine, but for some people that's not nearly enough. Although my diuretic is a potassium-sparing one, I still have to take 20 MEQ of a potassium supplement every day, and I eat my banana too. My family physician and my oncologist's nurse practitioner both push this rather hard, and it's kept the cramps away (except for a few times when I was on Tarceva, which has been discussed here before). I also agree with the acupuncture suggestion. Here in Hawaii, with its large Oriental population, it's common to have an acupuncturist sharing an office with other more "traditional" Western medicine specialists — maybe not so much in Michigan. I haven't used their services myself, but we have family friends who are acupuncturists, and they are very serious medical professionals. Michigan should have some too. http://michiganacupuncture.org/ http://acupuncture-treatment-specialist ... n-0-MI.htm http://acupuncturists.healthprofs.com/c ... rists.html Good luck, Judy! Ned

Hi, Mary. Here's something I wrote a few years ago about my exploratory surgery, including some things you can do now to make your recovery easier: http://onctalk.com/bbPress/topic.php?id=460&replies=3 Best wishes and Aloha, Ned

Yeah, it's a rash like no other. After my 3-day break the rashy part of the rash stayed rather mild, but the sore/splitting fingertips soon started and lasted 4 months. For someone who hasn't had that, it's hard to imagine how much it limits what you can do. Sounds like ts had everything at once. Hopefully, at least in total, things will be better now. Ned