recce101

It seems that some people on chemo have a tendency to get dehydrated even if they drink what they think is a huge quantity of water. So it's not uncommon for these folks to need a trip or two to the ER or their oncology clinic to get rehydrated by IV. I don't seem to have that tendency, so I can't give you any first-hand "how it feels" tips. Maybe others can, or maybe it's very unpredictable. Glad you're on to something, but it might not be as simple as just drinking more water. Aloha, Ned

Good deal, Denise. You guys are one tough bunch! Aloha, Ned

Thanks, David. I'm happy to say that my symptoms don't match your description, at least not yet. Hinj, that's exactily what I'm feeling, including the grocery cart thing and the tendency to lean forward when walking. I'll Google those medical terms and get more info. And yes, I'm still on Gabapentin/Neurontin, so chances are it would be worse without that. Thanks for the help. Aloha, Ned

Terrific! When I was having my most serious eating difficulties (on Taxol/Carbo) I had to drink three of the 350-calorie cans/bottles of Ensure, Boost, or the Wal-Mart clone plus whatever food I could tolerate just to maintain weight. Because of various changes in the body, someone with cancer usually requires MORE calories to maintain weight than they needed before cancer. If the Boost starts to get a little tiresome, try Carnation Instant Breakfast. There are several flavors available, some VERY tasty -- they're packets of powder which you can mix in a beverage such as whole milk, 2% milk, soy milk, a vanilla milkshake, whatever sounds good. Thanks for the chronological profile. And let us know about the bladder issue when you have a chance. Aloha, Ned

Welcome to the group, Christina. It's great having you with us! Aloha, Ned

Hi, Gabby: Okay, first things first. I know you called and spoke to the on-call doctor at the hospital about the urinary difficulties, and I guess the prostate being enlarged due to chemo could be a cause (though my already enlarged prostate didn't get any bigger with chemo), but I didn't like his statement that it could be "just" a bladder infection. Chemo adversely impacts the body's immune system, and while on chemo there's no such thing as "just" an infection. Please call the onc's office and tell them directly. An infection of any type while on chemo can get out of control and, among other things, require the chemo and/or radiation to be interrupted while the infection is being treated. After that's resolved, you might take a look at this rather lengthy post I wrote to someone last summer about their parent's eating difficulties: http://lungevity.org/l_community/viewto ... 878#316878 It would be a good idea to put a summary of your dad's diagnosis, treatment, and response to treatment in your profile or "signature" area, where you have the quote about "nobody can go back..." That will attach to every message you send and help us give you better answers without doing a search for your previous posts. Aloha (sorry, I don't know the Czech word for it), Ned

Have a great weekend, cat! Aloha, Ned

Hi, Gabby, welcome to the LCSC! I'm 50 percent Czech, with the remainder being a nondescript (at least to me) mixture from a few other places. My grandfather was born in the former Czechoslovakia (Province of Moravia) in 1876, and at the age of 4 he came with his parents to America. They traveled by train from the port in Baltimore to their new home in Texas, and his earliest clear memory of America was getting trapped in the train car restroom with a jammed door and screaming all the way to the next station, where he was pulled out through the window. That was in 1881. Another thing he liked to talk about was a near-fatal copperhead snakebite at the age of 9. But he did survive to adulthood and into his 80s, and had four children, one of whom was my father. I'm happy to hear your dad is responding to chemo. You didn't mention any mets, so is his SCLC limited stage? Wishing you and your dad the best. Aloha, Ned

Gabapentin (Neurontin) is what I took for peripheral neuropathy. Some people don't get much help from it, but it was very effective for me. I was still on it when I got the shingles last year, and my family physician told me that's why I had so little discomfort from that episode. I was on a very light dosage -- at the peak, just three 100mg capsules over the course of each day, then stabilizing at two capsules. Good luck with it! Aloha, Ned

Rosie says thanks for the compliment! How long these effects will last, no one really knows. Every individual is somewhat different. The worst aspects of my taxol/carboplatin treatment have faded, though I still have some stomach issues. Many, probably most, of us have come to accept that things will never be quite the same as before the treatments. We call it the "new normal" and adjust our lives accordingly. It's amazing what the mind can do. But I've noticed a positive aspect of the wacky thermostat issue. I previously was the "warm" member of the family, rarely a jacket when others were bundled up, then hot and sweaty in the summer with others thinking I was being wasteful with the air conditioning. Now it's the opposite, and I'm the first one bundling up in the winter, but this summer I've been quite comfortable and it's nice to be able to hassle others about their electricity use (very expensive here). On a very hot day I may feel a little flushed and get itchy skin, but I'm fine as long as I can stay out of the sun. Though I guess it's possible that one's thermostat could vary the wrong direction each season. Aloha, Ned

Hi, Tammy, welcome to the LCSC! I doubt that you'll find a site with existing authoritative information on "unusual" side effects, but posting questions here will bring out responses from other patients and caregivers who have first-hand experience with similar conditions. Another site, which integrates patient experiences with expert medical information is cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here. Let us know what specific drugs your mom had or is continuing. Sun sensitivity is a common side effect of various medications, such as the doxycycline I'm taking to reduce Tarceva skin toxicities. And aside from the sun aspect, many of us talk about the feeling that our body thermostats have been thrown out of whack by chemo. I've seen a peak of those sorts of comments during the two winters I've been on the site. The weight around the middle item has also come up, but I don't recall the assumed cause except possibly steroids after brain radiation. Best wishes and Aloha, Ned

Because of our large Oriental population, acupuncture/acupressure is for all practical purposes a mainstream treatment in Hawaii. I've never used it myself, but I know a number of people who have, and most of them say it was helpful. Several on this board have mentioned it as well. Aloha, Ned

Thanks, all, lots of good info. Seems there's a general consensus that pain is pain, and whether it's caused by a met or degeneration usually isn't apparent from how it feels. Actually, my question was mainly one of curiosity, perhaps with "planning ahead" implications, more than any immediate concern. I've been going out on walks with the weighted backpack for several weeks now, and the lower back feels much better than it did a month ago. If it starts getting worse I might consider a chiropractor, but what I'd REALLY like to do is revisit some of those delightful Bangkok steam bath establishments where the young ladies are so proficient in back walking. Pure pleasure! Maybe even better than some of the other stuff that I'm too old for now. Aloha, Ned

Well, some of mine did, but not where I would have preferred! I'll blame it on the Tarceva. Aloha, Ned

Good show, Coni, happy for you both! Aloha, Ned

Right. Once the Benadryl premed drowsies wear off, the steroid premed (probably Decadron) will keep him "up" through most of the second day (today). Some fatigue will most likely set in this evening (and will be increased if he's getting a Neulasta injection today). I found the fatigue peaked around the fourth day and my energy started returning after that. Glad there was no allergic reaction during the infusion (I had none). Keep us updated! Aloha, Ned

What a trooper! I was just reading through his latest posts a couple of days ago. Few of us would be able to match his courage and openness. The link to his blog will stay in my Favorites for inspiration "if and when." Aloha, Ned

Hi, Katie. "Stable" is a favorite word around here too. Some of us have found that with Tarceva, "stable" doesn't quite tell the whole story -- after a few weeks we start to feel better, with more energy, increased stamina, and seemingly improved lung function, even if the scans show little if any shrinkage. How much of this is due to the Tarceva and how much is just the absence of Toxic Taxol and the like, I don't know, but it's a nice change, and I hope your dad gets those benefits too. If you haven't already, may I suggest that you visit cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here. One of our Canadian members has put together a list of OncTalk and GRACE references on Tarceva, with emphasis on management of side effects: http://cancergrace.org/forums/index.php ... 04#msg2904 One of my biggest difficulties with Tarceva has been fingertip and nail problems, which started at about the 2 month point, after my rash was pretty much under control. Those references contain some of my countermeasures for that. You should be hearing from some of our mainland members in the morning. It's still your yesterday out here in the Pacific, which allows me to be one of the first to welcome you to the LCSC (I see Sandra from British Columbia beat me by a few minutes). I hope to see you at cancergrace.org as well. Aloha, Ned

Good, Christie, I see you've posted on GRACE. I wrote Dr. West and gave him the link to this thread in case he wants to review it. Aloha, Ned

Christie, keep in mind that I'm just another patient. But with the additional information you gave, if I were making the decision for me, I would not want to wait until Onc #2 returns from vacation before starting a chemo program. I'd want to talk to Onc #1 about the options as soon as the bone biopsy has been evaluated, and I'd be inclined toward chemo even if the biopsy is negative and lung surgery is recommended -- chemo either before or after the surgery. But also keep in mind that I'm more pro-chemo than some people, because I've had good results from it with no significant long-term side effects up to this point. I'd still advise asking Dr. West, and you're welcome to quote any of the stuff I've said in your question. Aloha, Ned

Hi, Christie. Yes, that is a tough choice, one for which there may be no "right" answer, but there are a couple more items of information that I'd want to have if I were making the decision. 1. Your husband got CT scans in April, June, and July. Your profile says the July scan "shows growth in a nodule." How much growth? Is that nodule the "less than an inch in diameter" nodule you mentioned earlier? Did anything else grow? Is the growing nodule in a critical location, like close to a major organ or blood vessel or nerve or airway? Answers to these questions would give some indication of whether delaying treatment another 2 or 3 weeks is problematic. 2. You said in the other thread that Onc #1 (at the independent center) was leaning toward Cisplatin and Gemcitabine. Was this the treatment she favored if the bone biopsy turned out positive, or negative, or either? If the bone biopsy is negative, and it's believed that lung surgery with curative intent is therefore an option, would having started the chemo adversely affect getting the surgery? This is an important question. I believe recent research shows that chemo before surgery can be helpful in some cases, especially if a tumor is close to another critical organ/vessel/nerve and needs to be shrunk so surgery can be safer. You can pursue this question with Onc #1 when you get the biopsy results. It may be possible/advisable to start the Cisplatin and Gemcitabine with Onc #1 regardless of whether the biopsy is positive or negative, then transfer to Onc #2 (at the preferred university center) to continue the same treatment and/or get the surgery if that's indicated. Your husband could explain to Onc #1 that he would like to switch to the university center because of convenience or whatever reason, and see what she thinks of that plan. There's a good chance the two oncs are well acquainted and coordinate these kinds of issues frequently. You could pose this question to Dr. West at cancergrace.org (which I mentioned earlier). He's WONDERFUL at laying out the pros and cons of this sort of issue. Although he can't and won't give specific advice on what to do in a particular case, the way he explains the various considerations is very helpful. Browse through some of his recent responses and you'll see what I mean. And he usually answers within 24 hours, even on weekends. Aloha, Ned

That's great! I'll bet she's a much happier camper as a result. I got the tomatoes tip from our family physician. I told him I was already taking 2 ranitidine tablets a day for acid reflux/heartburn and didn't want to go to the next stronger medication because of possible interference with Tarceva, and he said among his patients the two biggest heartburn triggers are chocolate and tomatoes (cooked as well as raw). I rarely eat chocolate, so that left tomatoes, and unfortunately tomatoes and tomato-based sauces are in many of our family's favorite dishes. We still serve them (nobody else has a problem, and I didn't until I started chemo), but I just go easy on the quantity and eat something bland the next meal. It's simple to control since the cause-effect relationship is so direct and dependable, and no more antacid pills are needed. Hope that fixes it for you guys -- it's been a major relief for me. Aloha, Ned

I totally agree with Patti B's post, every word. A few years ago I tried to cut out caffeine and found I simply couldn't do it -- horrendous headaches that nothing would touch. I was finally able to stabilize at just one (rather strong) cup of coffee first thing in the morning. That's what I was "on" during my 2006 and 2007 chermos, then increasing heartburn/acid reflux motivated me to eliminate possible heartburn triggers, so in January this year I decided to make an attempt to cut out that one cup of coffee. I substituted a large amount of juice and cold water first thing in the morning, and found the only drawback was a sluggish feeling the rest of the day -- no headache! The next morning, just juice and the realization that I needed to ease into the day instead of revving up with a blast of caffeine. It didn't stop the heartburn -- I needed to cut out tomatoes, too -- but as an unexpected benefit from zero caffeine, I haven't gotten up with even a minor headache since January! But your mom's success in cutting out smoking calls for MAXIMUM CONGRATULATIONS. Best wishes and Aloha, Ned

Yes, Dean, please stick around and help us respond to the new members who sign up every day. Many are devoid of any hope when they first arrive, and you'll be a great inspiration to them. Aloha, Ned

Hi, Christie, welcome to the group. You're certainly on the right track with everything you're doing and are planning to do, and your husband is very fortunate to have you as his advocate. So far, everything your (his) oncologist has said seems quite reasonable to me, but it's certainly a good idea to get additional opinions. If you haven't already, I suggest you visit cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here. Here's an excellent article by Dr. West comparing four different first-line treatments for advanced NSCLC (adenocarcinoma, which your husband and I have, is the most common subtype of NSCLC). One of the treatments studied is the one you mentioned, Cisplatin and Gemcitabine (also referred to by its trade name Gemzar). Avastin is sometimes added to that and other "doublets," but Avastin was not a part of this particular study. The results of all four treatments, as you'll see from the article, were essentially identical: http://onctalk.com/2007/01/16/chemo-com ... adv-nsclc/ Again, welcome, and I hope to see you at cancergrace.org as well. Aloha, Ned