recce101

I've heard of cases where people getting and responding well to Tarceva had basically no rash, so it's not a litmus test, just a common tendency. But I guess you could look at it this way -- if you're doing well now, and several months down the road start to progress, and find out at that time you were NOT on real Tarceva, then you have another sharp arrow in your quiver ready to use! Aloha, Ned

Welcome, Susan -- I love those Tarceva success stories!! Aloha, Ned

I think it would be fairly easy to make an informed guess. I got no skin effects at all from Avastin, just slow healing of previous abrasions. Tarceva is infamous for its rash, which is probably unlike any rash you're ever had. When will you get the official word? Aloha, Ned

Amie, I know it's discouraging that your dad is not getting as much relief from the pain as you had all hoped. You mentioned a subliminal message/relaxation DVD, which prompts me to ask -- does the center or hospital have an integrated medicine or complementary and alternative medicine section? What works for one person may not work for another and vice versa. What I'm wondering is whether acupuncture or some other Eastern medicine technique could be helpful for his sort of pain. I have no idea, but I don't see what harm could come from trying if the service is available. Though I've never used acupuncture, it's a rather common treatment in Hawaii and some other places, and I'd certainly be open to it for myself in a similar situation. I believe fear of the unknown is the worst kind of fear, because the absence of factual data combined with an unfettered imagination can drain even the strongest person. Whatever is going to show up during the Saturday MRI is in your dad's body right now -- it will be revealed by the MRI, not created by it, and the sooner you (i.e., you and your family and the medical team and probably your dad too) know more precisely what you're dealing with, the sooner you can all do what's needed for his well-being. If he has spinal mets, and to me as a layman that sounds likely from what you say, you need to know as much as you can as soon as you can. Knowledge is strength. My Aloha to all, Ned

Hi, Anne, welcome to the group! Are you still on the Avastin every 3 weeks (along with the mystery pill)? After finishing my Taxol/Carbo/Avastin treatments I was on Avastin alone for 8 more months, and have been on Tarceva since October. And remember, stable is good! Aloha, Ned

Hi, Susan, welcome to the LCSC! I'm not quite as much of a carbon copy as Patti B, but there are some similarities. I stuck with Taxol for all 6 cycles of the triple-threat cocktail, then was on Avastin alone for another 8 months, now on Tarceva since October 2007. I'm actually in better condition than before my diagnosis, so no complaints there. I see heartburn is giving you a major problem. Did it just start when you began the chemo? There's probably no question that the chemo (probably the Taxol/Taxotere part) is contributing to that, but there may be other triggers you've had all along that just didn't manifest until the chemo pushed everything over the line. My heartburn started gradually, not suddenly as I gather yours did, and increased steadily until I simply had to do something about it. Some time back I had already reduced my caffeine intake to one cup of coffee in the morning, and since caffeine is a known heartburn trigger I hoped going all the way to zero would do the trick. Unfortunately it didn't, but it did have the unexpected benefit of ending the mild but annoying headaches I've had one or two days a week for at least 50 years. So I asked our family physician for his thoughts, and he said that among his patients the two main heartburn triggers are chocolate and tomatoes. I'm not much of a chocolate eater, but I do love tomatoes (cooked and uncooked), so eliminating them from my diet was asking a lot. But I did it, and bingo, no heartburn. I just finished my McDonald's caesar chicken salad, and it's painful to have to leave those four beautiful cherry tomatoes on the bottom of the dish, but not as painful as the alternative! Good luck with finding and eliminating some of your non-chemo triggers. Aloha, Ned

Hi, Gail, glad to hear it's so far so good. Except for Avastin, which I didn't see you mention, I had the same treatment program as Hank is starting, including the Neulasta injection the day after the chemo. I always felt fine after the infusion, hungry as a horse, and a good part of the next day. Then as the Neulasta was taking effect, the previous day's steroid premed was wearing off, and it was definitely lights out early that second evening. A couple more days of moderate fatigue (an afternoon nap was a must), and the energy gradually increased for the rest of the 3-week cycle. Never any nausea, but some other side effects as listed in my profile. It wasn't the most fun period of my life, but not as bad as I had expected. Aloha, Ned

Good deal, Joe! I think yours is the first case I've heard of where the Tarceva dose was reduced because of fatigue (seems it's usually the rash). Anyway, glad you're back up to 150 and those guys are cavitating again! Aloha, Ned

I appreciate your thoughts, which I haven't seen put quite that way before. When I first joined the LCSC in September 2006, I was amazed at the speed and quantity of responses to my very first post and the warm feelings they conveyed. I thought these must be some of the finest, most understanding, most selfless people on the planet! Of course I was right, but there's more to the story. As I read posts from other new members, though I was still a cancer novice myself, I occasionally found something to contribute other than my standard "welcome to the group" -- and the response I sometimes received in turn gave me an incredibly good feeling, actually made my day. The more I did that, the more I moved beyond my own problems to connect with a group that has something very powerful in common. You can't get much more "real deal" than lung cancer. So it's not a drain -- quite the contrary. In a sense, reaching out to others is as helpful to the "reacher" as it is to the "reachee." You might find that true for yourself, sooner than you would ever expect. Aloha, Ned

I used to think that, Shelley, but no longer. Even without cancer, if we wait until all uncertainty is removed from our lives before celebrating, we'll never celebrate. Thanks for posting! Aloha, Ned

Hi, Lisa, welcome! As you read through the posts here you might get the impression that most of us have advanced medical degrees or were born with silver stethoscopes around our little necks! Not so -- we were as overwhelmed as you at the beginning, but everyone in our position (that includes you now) learns the concepts and jargon faster than ever thought possible. Please be sure that whoever (preferably you) goes to the appointment with your mom is prepared to take notes. Even then, it's easy to miss something since the terminology will be unfamiliar, so it's a great idea to take a small tape or digital recorder with you. I've never heard of a doctor objecting, and it will give you something to review later when things start to make a little more sense. Let us know how it goes, and we'll try to help with perspective on some of the information you may be given. Best wishes and Aloha to you and your mom, Ned

Dear Teri: As I may have told you before, I rarely read posts in the Grieving forum, but I make it a point to never miss one of yours. While poignant, they are always beautifully constructed and full of uplifting thoughts that speak even to those of us who are not currently in a grieving process. To put it another way, I love the way your mind works. Aloha, Ned

Hi, welcome to the group! Don't be too concerned about whether you're posting in the right forum. I think most of us who are inclined to write a lot of responses tend to use the "View posts since last visit" feature and will see them regardless of what forum they're in. If something is obviously misplaced (like a good news item in the Grieving forum), then a moderator will simply move it without making an issue of it. We try to be supportive, informative, and nonjudgmental -- and we definitely don't "sweat the small stuff." Best wishes and Aloha to you and your mom, Ned

But if Keri's grandmother heard it, I bet it made her day! Aloha, Ned

Hi, Bette, welcome to the group! I'm originally from Texas (small town of West, 15 miles north of Waco on Interstate 35), but have lived in Hawaii since 1972. You're the kind of success story our new (and often terrified) new members need to hear from. Please post often! Aloha, Ned

That's great, Ken!! Aloha, Ned

A wonderful update, Jen! Thanks and Aloha, Ned

Hi, welcome to the group! You've found the right place, no question about it. As others have suggested, please spend some time creating a profile on behalf of your "significant other" -- that will save you much repetitive typing in the future, as there will be no need to give background every time you post a question or comment. Many of us will have very specific information and recommendations depending on age, tumor subtype, other medical problems, etc. etc. Also keep in mind that with recent advances we're beginning to think of lung cancer as a treatable chronic condition rather than an automatic death sentence. Personally, I expect to die WITH cancer and not FROM it. Much Aloha, Ned

Hi, Barbara, welcome (back) to the group! I agree that this site is superior to the other support groups I've visited. It has a comfortable feeling, informal yet intense, folksy yet leading edge, without all those annoying popups suddenly obliterating what I was trying to read. I'll be interested in reading your husband's history, especially the various treatments he's been on. In his fourth year of treatment, he's now on the same combination that was my first line treatment in 2006 -- Taxol/Carbo/Avastin. Though Avastin probably wasn't available for him in 2004, I believe Taxol and Carbo were in common use for lung cancer. Whatever he got seems to have worked well, because you guys (both of you!) are an inspiring success story. Aloha, Ned

Sandra, with news like that, I would certainly expect anyone to "go on." Congratulations and Aloha, Ned

Amie, I'm really sorry your dad is not getting quick relief from the radiation. Maybe it will start to help soon. Edema is sort of an odd thing -- I have it occasionally, and I've never been able to figure out why. They always tell me to keep my legs elevated, but that's hard to do if I'm feeling good and want to be active. But if your dad is doing a lot of sitting, having his feet on a footstool might help. Of course you're probably doing that already... Aloha, Ned

Allie, I just wanted to say that any prognosis figures they may give you are averages (medians) for a very large number of people who got a similar diagnosis at some time in the past, and there's a great variance from one person to another. Many doctors are very hesitant to give this "information" because it is not directly relevant for any one individual. There are always some on the winning side of even the worst statistics. Best wishes and Aloha, Ned

Judy: I went to the clinic for my monthly port flush today and asked the head chemo nurse to check my chart for that info. Each drug uses a different method of computing the dose, which depends on variables such as body weight (for Avastin), body surface area (for Taxol), and a complex formula called "area under the curve" or AUC (for Carboplatin). Here are the formulas and the dosage for me in milligrams (height 5'9", weight 175): Taxol: 200 mg per square meter of body surface area -- 380 mg. Carboplatin: AUC 6 -- 720 mg. Avastin: 15 mg per kg of body weight - 1190 mg. If you need to actually understand how and why these formulas are used, maybe we can get cat127 to give us a hand. Aloha, Ned

Hi, Ernie, looking forward to a good scan report and getting those side effects under control. Aloha, Ned

When I had my siege of neuropathy, it came on in the sequence of first numbness, second tingling, and third the random stabs or shocks throughout the legs that caused sudden weakness and a tendency to fall. When things started improving, that went away first, then the tingling, finally (and this took a while) the numbness. Everything I've heard and read tells me that neuropathy tends to get worse with each additional infusion of the drug that caused it (probably Taxol in your case) because the toxic effects gradually build up in the system. Since Taxol is such an effective drug, and since it's been in use for years and most oncs are very familiar with its characteristics, it is still widely used (and not nearly as expensive as some of the new drugs). A lot of people, probably most, never get neuropathy from Taxol, and if I'd stopped after 5 cycles I would have been one of those and you would never have heard from me on this issue. Of my other side effects (see profile), some were less pronounced as I went through the 4-month Taxol/Carbo/Avastin program, some got a little worse each time, and some had no particular pattern. But when the neuropathy hit during my 6th cycle, I knew it was something different, especially when I had to ask my wife to pull her deceased father's walker out of the closet so I could get around. And although the tingling-stabbing resolved soon after starting the Neurontin while the fatigue, drainage, digestive, and other problems went on and off for months, the neuropathy still stands out as the most disabling and potentially serious complication I faced. It's not something to be taken lightly. Some have mentioned Neulasta, and yes, the bone-aching drop-dead flu-like fatigue from that first injection was a real wipeout -- but it was less troublesome each time and I hardly noticed it during my 5th and 6th cycles. Time to head down the hill for my monthly port flush. Aloha, Ned