recce101

Hi, Paulette, welcome! I'd say you've got a smart surgeon, not the kind who strides into the room and says "I got it all, you don't need chemo." With stage Ib it's pretty much of a tossup whether chemo will improve longevity, but if I'd been Ib rather than IIIb I'd still have opted to do it. Here are two references from 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: http://cancergrace.org/lung/2007/09/30/ ... -ib-nsclc/ Best wishes and Aloha, Ned

Hi, Katy, welcome to the group! Sounds like your husband's docs are on top of things, and I bet you'll find the brain radiation does the job on that lesion. Keep us posted and don't hesitate to ask any questions that come up. Aloha, Ned

Sandy, thanks so much for the update. I'm sure I speak for many others when I say we too are relieved that your mom is in the hospice program. Let us know how things are going, but mainly, enjoy your time together. Aloha, Ned

Hi, Sue, welcome to the LCSC! Lung cancer came as a shock to many of us, especially those who had never smoked and, to a lesser degree, those like myself who had quit 30 or 40 or more years before being diagnosed. With so much emphasis on the smoking connection these days, non- and never-smokers can be lulled into a false sense of security, and the symptoms are often so subtle that the cancer may be well advanced before we realize anything is wrong. You're responding very well to treatment, and it sounds as if the side effects have not been too debilitating. Have you had any particular difficulties other than the usual fatigue? Best wishes and Aloha, Ned

Bummers, Carol, especially on Mother's Day weekend! But since you've been clear for over 4 years, I would think the chances of it being a lung cancer met are rather small. I did a quick Google for "fecal occult blood test" and found quite a list of possibilities, most of which are not nearly as scary as cancer. My Aloha, Ned

Kristi: I haven't used it myself (haven't had radiation), but I've heard of a concoction known as "Magic Mouthwash" which a pharmacist can mix on a physician's order. Radiation oncologists would be familiar with it. A number here have used it, and I've even seen the ingredients listed, so someone knowledgeable may chime in. Also, a pharmacist might be able to suggest a non-prescription alternative. Ned

Hi, Nancy. You may not hear this from the oncologist, but I can tell you from personal experience that the answer is YES. Here's my eating story in a nutshell: During my 4 months on Taxol/Carboplatin/Avastin, the chemo did a real number on my digestive system from top to bottom. Taste became practically nonexistent (not BAD taste, just NO taste), the mouth and throat became irritated, and the only sensation from eating was the FEEL of the food going down. Anything with rough texture or defined edges (raw vegetables, bread crust, nuts, even some meats) was painful to swallow, and I existed mainly on Walmart's Ensure clone, Carnation Instant Breakfast powders mixed in milk, canned fruits, ice cream without chunks, milkshakes, and the like. Add to this the fact that my stomach wouldn't accept anywhere near the quantity that it previously did, so to maintain weight I needed to eat something like 5 small meals a day instead of 3 normal meals. Obviously a hassle for the family, so I maintained my own stash of tolerable snacks for that period. Next was 8 months on Avastin alone. My eating slowly improved, but I emphasise SLOWLY, since a primary effect of Avastin is to retard the formation of new tissue (that's how it works against the cancer), and that translates into slow healing of previous irritation. Next was 16 months on Tarceva alone. My healing returned to normal, and there was no longer any discomfort with swallowing, but heartburn increased significantly. I had to cut out foods that had never before caused a problem, such as tomatoes and anything with a tomato-based sauce (many of my favorites!). Although the foods with chunks and edges were no longer difficult to swallow, they DID frequently cause a problem when they hit the stomach, so small quantities chewed exceptionally well became the norm for those months. I also had some queasiness off and on with Tarceva, but never active nausea. Eventually Tarceva became ineffective for my cancer, so I was taken off of it in preparation for a third-line treatment. Less than a week after stopping Tarceva, my heartburn disappeared completely, and the quantity of food my stomach would accept returned to normal. Yes, I gained a few pounds too, but that's okay. I'm happy to say that the new chemo (Alimta) hasn't caused any eating problems so far, and neither has the Carboplatin which was added last week (again, so far). If your mother's reaction is similar to mine, I'm afraid she will continue to have some eating issues as long as she's on Tarceva (and to a lesser extent Avastin). I haven't had Zometa, so I can't comment on that. The best thing I can suggest is for her to keep meals small, supplement with between-meal snacks, eat slowly, chew well, and eliminate foods that don't agree. Don't pressure her to eat more or faster, and give her a hug from me. Aloha, Ned

Hi, welcome to the group! It sounds as if your dad had an exceptionally good response to the chemo. Do you know what specific chemo drug(s) he had, and do you know the cell type of the tumor found in his lung? Since you mentioned "stage 4" it's probably non-small cell lung cancer (NSCLC), and the main cell types there are adenocarcinoma (most common), squamous cell carcinoma (not quite as common), and large cell carcinoma (relatively rare). Tarceva is a "targeted therapy," a daily tablet taken at home, and it was initially approved by the FDA as a second line treatment for those who had "failed" a previous chemotherapy regimen. I think this may be the source of your confusion. That statement doesn't mean the patient was never responsive to the first chemo (you dad obviously was), but that he had become unresponsive to it, as indicated by the growth of the adrenal met, which had probably mutated and developed a resistance to the chemo. Since your dad was on a clinical trial, it's possible some extra testing was done on the tissue samples from his lung and adrenal gland, which may have indicated that one or both could be quite responsive to Tarceva. Do you recall mention of a test for an "EGFR mutation"? I'm already over my head here, so let me suggest that you post a question (including any additional information which you have available) to 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. Yesterday a couple of us recommended GRACE to another new member, and he already has an answer from Dr. West. Best wishes and Aloha, Ned

Hi, Pixie, welcome to LCSC! Tell us more about your type of lung cancer, the particular chemo agent(s) you're on, and how you're feeling. Any major problems with the side effects? As you browse through the forums here, be sure to read the profiles at the bottom of the various messages as well as the detailed posts in the My Story forum. Best wishes and Aloha, Ned

Hi, Lee, welcome to the group! I enthusiastically second Ellen's suggestion to visit cancergrace.org — it's an exceptionally valuable resource. From what I've read there, I believe that if a period of several years elapses from the time of a lobectomy to the appearance of a tumor in the other lung, the new tumor is far more likely to be a new cancer than a met from the previous cancer. I think the odds of one versus the other change at about the 2- or 3-year point, but whether a second lobectomy is advisable is a more complex question as you obviously know. Instead of a lobectomy, I wonder if the new tumor could be removed via wedge resection using a minimally-invasive VATS procedure? Best wishes and Aloha, Ned

Hey Fred, Kasey is our miracle too!! Ned

It's a beautiful day in Hawaii nei, and the worst seems to be over from my Carboplatin/Alimta treatment Tuesday. Fairly significant fatigue Thursday and Friday, but none of the other "features" (flashing lights, roaring hurricane, nausea, neuropathy, foot rash) that came with the Cisplatin experiment in early April. So far nothing has messed with my taste buds or stomach, and last night we enjoyed some spicy Korean food from one of our favorite take-out establishments. Today should be an easy one with a trip to the shopping center and not much else. Aloha, Ned

Ah, the Red Scare! On a happier note, my first daughter was born on Labor Day (the September one) in 1961, and May Day is Lei Day in Hawaii! Ned

Hi, and welcome to the group. You definitely came to the right place and you've received some great advice already. There seem to be some words missing from the diagnosis you gave in your message. It's probably either small cell lung cancer (SCLC) or non-small cell lung cancer (NSCLC), and it does make a difference in regard to the treatment. Also, someone mentioned "stage" or how advanced the cancer is — the small cell type is referred to as limited disease (LD) or extensive disease (ED), and the non-small cell type is given numbered stages I thru IV. Do you know where the cancer is located? In one lung only? Anywhere else? How is your husband feeling physically? If this was caught early, he may be a candidate for surgery, and that's a very good thing. In some cases, radiation may be given before or concurrently with chemo. And as others have said, chemo is not the terrible experience that it was 10 or 20 years ago. There are new chemo agents with relatively few side effects, and there are now very effective medications (intravenous and oral) which do a great job making some of the older chemo agents more tolerable. I've been on treatment continuously since October 2006 and there's never been a day when I've been so "out of it" that I couldn't function. It will take a few days for you and your husband to absorb what's being thrown at you all at once, but after you know exactly what you're dealing with and have a treatment plan in place, things will look much brighter for you. Read some of the stories we have in the profiles at the bottom of our messages and in the My Story forum. Best wishes and Aloha, Ned

Congratulations, Dana! Ned

Kasey wrote: As I read your profile, in early 2010 you'll be 5 consecutive years NED — how do you spell C...U............??!! Ned

Treatment went fine, with no problems to date. The infusion, including the premeds, Carboplatin, Alimta, and a brief flush was only 1 hour 40 minutes, far better than the 7 hours for Cisplatin/Alimta plus 3 hours more hydration the next day and then the next. And I don't have to go back tomorrow for a Neulasta shot! I'll be finishing my Decadron tablets tomorrow, then I imagine I'll have some fatigue starting Thursday, and I hope that will be about it. But still have to finish collating my printing job, so bye for now. Ned

Should be a nice day in Hawaii, though it's still too dark to see much. I'll be heading down the hill to my oncology clinic in 90 minutes for my first infusion with the Carbplatin/Alimta combination, both parts of which I've had in other regimens, so I'm not anticipating any problems. As of 2 days ago I finally seem to be over that yukky Cisplatin experience, so I'll be driving myself to the appointment. In the unlikely event that I have some sort of reaction, my wife can take a retired next-door neighbor with her to pick me up, and he can drive my car back home. Backup plans are a great mind reliever, and the fact that we have terrific neighbors on both sides is a real blessing. This afternoon I have a couple of priting jobs to finish up in the garage, so I'll check back in then! Aloha, Ned

In almost every case, it would be the most expensive one! Ned

Hi, Teri. Most of our mainland members have probably turned in for the night, and you may not hear from any of them until Monday morning. But it's still Sunday evening out here in the middle of the Pacific, so welcome to the group! Your love for your mom comes through loud and clear, and the fact that she's not up to much visiting right now is I'm sure very difficult for you. I hope the radiation will relieve some of her bone pain — it does take a while for it to be effective, but that may allow her to cut back on pain medications with their many side effects. Do you know the names of the chemo agents she has received, and whether her lung tumors have responded to treatment? If you read through the profiles at the bottom of our messages, and browse the posts in the My Story forum, you should find some reason for hope. We have a number of members who received a stage IV diagnosis several years ago and are currently doing quite well. There's plenty of variation from one patient to the next, even within the same tumor type and stage group, and your mom sounds like a tough lady. Best wishes and Aloha, Ned

Hi, Carrie, welcome to the group. Sounds as if your husband responded very well to treatment. What chemo drugs did he have? No one does, really. But the way I look at it, cancer provides a wake-up call that can positively affect how one handles the rest of his life, however long that may be. The same thing can hold true for the entire family. Give us some more details, and help us welcome the "newly diagnosed" who join our ranks every week. Best wishes and Aloha, Ned

2, then 3, then 2. When I get over the side effects from that one-time-good-deal Cisplatin fiasco, I might ask my family doc about a good nonsurgical BPH treatment! Ned

Hi, Donny, welcome to the group! I didn't have radiation since my cancer story began with a malignant pleural effusion, but I know that many, many people have experienced radiation pneumonitis. If you haven't already, 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. Best wishes and Aloha, Ned

Lynn, I'm convinced you're doing the right thing, and I believe the judge will see it your way too. And Denise, bless you for so openly sharing your experience and wisdom. Aloha, Ned

Thanks for the link. Did you notice that someone we know gives the first interview in this excellent New York Times series? Ned