recce101

Hi, Ellen, welcome to the group...but don't get me started on statistics! They're just historical averages (actually medians) of a large number of patients with a similar diagnosis, and have no direct relevance to you, or me, or any individual. I have adenocarcinoma stage IIIB, which supposedly has a survival outlook rather close to stage IV, it's now been 18 months since my diagnosis (that's when the clock begins), and I'm feeling better than I have in almost 2 years. Back in late summer 2006 my pulmonologist and thoracic surgeon both used identical words -- "it doesn't look very good" (they must teach that line in medical school) -- though to their credit they didn't offer me any prognosis statistics and I didn't ask for any. My oncologist was wonderful -- he let me take the lead in our first meeting, I told him I wanted the best available treatment for my condition, but that at my age I valued quality of life over longevity. He put his hands on my shoulders and looked me straight in the eye and said "Ned, quality of life, that's our goal." Now back to your situation. I would wager that IF, in July 2007, the ER crew had sent you for a chest CT scan, much of what showed up this winter would have showed up then. If that's the case, there's a good possibility you would have been designated stage IV at that time, somebody would have looked in his median survival tables and said "adenocarcinoma stage IV, 8 months" and you would have made a mental note "expiration date March 2008." Remember, the countdown for this stupid exercise starts at diagnosis, whenever that occurs. So please forget this 8 months stuff. Thanks, I needed that. The only other point I would make is to echo what Don said, that you shouldn't assume chemo will wipe you out. Your oncology team might choose to radiate your mets at the same time you're getting systemic chemo, and yes you'll have some fatigue, but possibly not much else. I've been on some form of chemo or targeted therapy continuously since October 2006, I've never been nauseous, I've had no days laid up in bed (an occasional afternoon nap doesn't count), and I've always been able to function though with a few limitations from time to time. Read through some of our profiles and don't count yourself out just yet. In a worst case scenario, if you do have poor tolerence to chemo and/or radiation and your quality of life begins to really suffer, you can always stop then. My advice? Go for it! Aloha, Ned

Great news, Heather -- that deserves a celebration!! Aloha, Ned

With much admiration and Aloha, Ned

Hi, Lori, welcome to the group. Every few months we have a flurry of messages on this very subject, including what do you say to people... We've had some rather creative suggestions. Click Search at the top, type "stigma" in the first search box, change Display results as to "Posts," change Return first to "All available," and hit Search. Best wishes and Aloha, Ned

Renate: Be sure your onc knows about the numbness, tingling, and stabbing in the feet and legs. Apparently he does, since you mention taking Neurontin. Peripheral neuropathy, probably from the Taxol, does tend to get worse with each treatment and can become disabling (even permanently disabling) if it progresses too far. Mine didn't start until the 6th -- and last planned -- Taxol/Carbo cycle, so no treatment decisions had to be made, and the Neurontin completely resolved it eventually (see my profile). Your onc should be able to switch you to another chemo that's less likely to cause neuropathy. Aloha, Ned

Hi, Karen, welcome to the group. When you know what chemo(s) your husband will be taking, please post an update so we can give you more specific help. Best wishes and Aloha, Ned

Hi, Patti, thanks for the update! Are you using any mind-body techniques such as meditation or visualization to complement the special diet? I believe that can be useful in conjunction with just about any approach, including standard chemo like I'm on, but especially with someone who has limited options. Wishing you the best, with lots of Aloha, Ned

Ha - we don't have to do that here! We just have to (actually we don't really have to if we really don't want to) remember that it's an hour later on the mainland. Aloha, Ned

There's a great little freeware program called CrapCleaner (now usually referred to as CCleaner) which does this for Windows computers. We should work up a version for cancer patients and their supporters/caregivers: www.ccleaner.com Aloha, Ned

Typically by doing a CT scan after several weeks of treatment and comparing that scan with one that was taken before treatment started. Blood tests will reveal how well your red and white blood counts and other numbers are holding up to the chemo, and while some oncologists do order tests for certain tumor "markers" in the blood, there's no general agreement on their usefulness. See this article by Dr. West at onctalk.com: http://onctalk.com/?p=577 Aloha, Ned

Hi, Colleen: I'm sure the information is available, and it's just a matter of accessing and interpreting it. But it's probably good that these types of impressions are walled off from our day-to-day thought processes -- otherwise we'd drive ourselves crazy trying to figure out all this stuff and never be able to survive, let alone prosper, in the "real world." I personally am sort of numb and you have to hit me over the head to get my attention. My wife is very intuitive, and sometimes what she feels is disconcertingly on target, but other times the source for her random impressions is never found. Three weeks ago she mentioned to me a couple of times in the same morning feeling "a blanket of cold fear" almost overwhelming her, while things seemed perfectly normal with everyone at our house. Around noon a fire department emergency team followed by an ambulance came rolling into our cul-de-sac -- a neighbor's mother had suffered a stroke, which developed into a series of strokes, and she is now in the hospital's long-term care facility. While your feelings the summer of 2006 may well have been related to the cancer that was growing inside you, similar feelings in the future may be something else entirely. I think the best most of us can do is use them as a "heads up" to be alert for something unusual that may be happening or about to happen. Aloha, Ned

Hi, Amie. I've heard others say radiation helped ease their pain fairly quickly. Hoping the Thursday and Friday treatments give your dad a somewhat better weekend and that he really turns the corner next week. Aloha, Ned

Hi, Jussi, it's good hearing from you. We'd all love to have every one of our anomalies shrink to zero, but "stable" is not too shabby either. Best wishes on your continued success! Aloha, Ned

You have every reason to be proud of your husband. Regardless of the factors which led to the longtime estrangement from from his brother, Dave took Marty's illness as a means to bring the family together. If you've been lurking here for a few months, you've seen several cases where the opposite has been true -- where illness tore families apart and brought out the worst in some individuals. Thanks for reminding us that there's a lot of good in the world. Aloha, Ned

Isn't she beautiful? Not speaking of the human -- that's my daughter visiting from Florida, not bad looking herself -- but our 2-year old golden retriever Rosie, who we got just today. What a stroke of luck that was! One of her sisters lives three houses up the cul-de-sac and another sister lives two blocks down the street. Aloha from Ned, the Happy Camper.

Hi again, Greeneyes, thanks for the nice thoughts. Though Ned is not NED yet (still some tumor activity in the right lung), I do hope to get there, and as we all say, stable is good too! Your profile looks fine. Since my rather lengthy profile appears above, I'm unchecking the "Attach..." box in this response to save space. Aloha, Ned

Hi, Greeneyes, welcome to the group! Congratulations on your activism, and for being proactive in your, and your husband's, medical care. Yours is the kind of story that all of our new members need to hear. If you convert your detailed and very readable history into a diagnosis/treatment/status profile like you see at the bottom of our messages, you could write just a brief welcome to new members and your valuable medical info would automatically attach. Here's how: Click on My Profile above, scroll down to the Signature block, enter/update your information (you can copy-paste from your message the first time), 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 to you and your husband, Ned

That's very good news! Will be looking for your next update. Best wishes and Aloha, Ned

Amie, all I can say is what I would do, and that would be to get his pain under control as the top priority. If the reason the radiology doc (radiation oncologist?) wants to start treatments ASAP is to help relieve the pain, which I would guess is the case, then I would push for that to happen. The medical oncologist you're seeing Wednesday is concerned with treating the overall cancer, probably with chemo as the main tool, and while that's important, in my opinion it's not as immediately, urgently critical as getting a handle on the pain. If an MRI is truly essential at this point and his current medications are not enough to keep him lying quietly, perhaps a pain specialist or anesthesiologist can assist with the MRI. I don't know if that's possible, but I would certainly ask. Please understand that I have no solid medical basis for suggesting any of this, but when I had a somewhat similar situation (not cancer) with my dad, all I could think of was getting him comfortable, and my reactions came from emotion and desperation, much as now. My Aloha, Ned

Hi, Cristy, welcome to the group! I think you and your boyfriend have a great chance of meeting your goal, and then some. I'm on the other side of the fence, NON-small cell lung cancer (NSCLC), but we have plenty of folks here with SCLC who are doing very well. You should hear from some of them shortly, but in the meantime you might want to read some of their "profiles." Here's what I suggest: Click on the "Search" link up in the purple banner, type "SCLC" in the top search box, near the bottom of the screen change "Display results as" to "Posts," change "Return first" to "All available," and hit the "Search" button. You'll get a huge number of posts (the most recent ones at the top) which mention SCLC in the body of the message. To view a member's diagnosis/treatment/status profile, you'll need to click the "Subject" link at the top of that member's message. If you do that with the RIGHT mouse button and select "Open in new window" (or "Open in new tab" for Firefox), when you're through reading the profile you can close the new window and be back at your list without losing your place. Best wishes and Aloha, Ned

Guess I'm older than the oldest hill -- I do remember them all, as I said in the other post (in political season, ya gotta be consistent). But I don't think I ever knew what lumbago meant. Is it a vegetable, a color, or a disease? Aloha, Ned

Hey, there's some good ones there, and I remember them all. Some I still use. You should write for Andy Rooney! Aloha, Ned

Hi, Bob, welcome to the group! My first chemo session was also on a Tuesday, 10/3/06. I was maybe a little apprehensive, and while I was reading email before leaving for the clinic our 35-year-old son came in and gave me the biggest hug. That was very uncharacteristic of him and quite a shock, and later that afternoon he was happy to hear that I'd breezed through the session with no problems. My biggest complaint was that my chemo combination required me to stay hooked up for more than 6 hours, and I didn't have much to do except roll my unwieldy IV stand down the hall to the restroom, which at my age I had to do somethng like 5 times. So 3 weeks later, just after I got hooked up to the IV, he popped into the clinic and presented me with a brand new portable DVD player complete with discs of a favorite TV series. So good things can happen on chemo day! Sure, you'll have some side effects starting a day or so after the session, but most clinics go to great lengths to make the infusions a pleasant experience. Let us know how it goes. Aloha, Ned

I agree with your husband about not wanting to hear prognosis figures, though it may be for a different reason than mine. I don't want to hear them because they have no direct relevance to me as an individual -- they're based on historical averages (or medians) of a large number of people with a similar diagnosis, and I've probably outlived those numbers already, whatever they are. I do like to know the tumor details and see my scans, as that helps me apply "mental strength" as you put it, but his technique of emphasizing only the positive is perfectly valid too and I applaud him for that. For your part, if you can mainly keep up with the names of the drugs and other treatments along the way, we can help you understand the side effects that he may be having. You're a great advocate and partner. Best wishes and Aloha to you both! Ned

Hi, Mary: I'm happy to see your husband is continuing with the weekly chemo sessions, this time substituting Taxotere for Taxol. He should find the infusion much easier on his body. Previously I had written, "He should find that easier to tolerate," which erroneously implied that the general side effects are less, which is not what I meant. What IS less is the chance of an allergic reaction during the infusion, because Taxotere does not require use of the harsh solvent cremophor, which is about the only thing that will dissolve Taxol for IV use. About what to expect, of course everyone is different, but here are some "common" side effects: 1. Fatigue from the combination chemo and radiation. It may stay at about the same level, or it might increase some through the remainder of the treatment. 2. Feeling cold is reported by many people on chemo (even in Hawaii ). Hawaii's wintertime days are hardly ever below 60-65F, but I wear a jacket more often than before, and I use more covers at night than anyone else in the family. It's not a big deal. 3. The chemo and radiation will cause changes in the taste of all foods, and the texture of some foods may cause them to be irritating or even painful when swallowing. Also, the stomach may not be able to handle as much food at one meal as before. If your husband is eating less, those could be the reasons instead of stubbornness or a lack of will power. Let him eat the foods that he enjoys (this list may change from time to time), let him snack between mealtimes, don't pressure him to eat things he's having trouble tolerating (for me that included meats, breads, and raw vegetables with hard edges), and supplement his nutrition with Ensure (or its Wal-Mart clone) and Carnation Instant Breakfast mixed in milk (dairy or soy). 4. Encourage him to drink lots of water. This will help flush the toxins out of his system, and it will help prevent the constipation which frequently results from chemo and especially from pain medications. Sounds to me like things are about as expected right now -- I should add that I'm not as tough as Connie B Let us know how tomorrow's chemo session goes. Aloha, Ned