recce101

Gee, Denise, you're right, tough guy! But if he's willing to be stuck 18 times to get an IV started, why is he so hesitant to get a port? It doesn't have to be done under general anesthesia, if that's his concern. I had a local for mine and don't think I was in the OR for more than 10 minutes. Then I spent about 30 minutes in the recovery room, but that was just waiting for the portable x-ray guy to show up and then to have it read to check on port placement. Of course Tom may be figuring that his chemo days are coming to a close and he can tough it out a little longer... Ned

CONGRATULATIONS! Aloha, Ned

Hi, David, welcome to the group. Ain't it the truth!! I don't think you said how long ago it was that your dad and sister went through their chemo, but if it was a decade or so ago, keep in mind that some good advances have been made either in the chemo agents themselves or in "premed" drugs to minimize the side effects of the harsher chemicals. This is especially true with nausea, which used to be a real problem with lots of people. I went through all my chemo without the slightest hint of nausea, though I did have some other side effects. Like you, I haven't had radiation, but I do know that it typically adds to the fatigue factor. Give us some more info on cell type, stage, scans, etc., preferably in a profile which will appear below each of your messages and save you a lot of typing in the future. Here's how: Click on My Profile above, scroll down to the Signature block, enter/update your information, 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. Ask as many questions as you like, and never hesitate to jump in with a comment even as a "newbie." You won't be a newbie for long! Best wishes and Aloha, Ned

Hi, Mary. My port has been in 19 months, and it hasn't been used for chemo since October 2007, when I went on Tarceva. I go into the clinic every month to have it flushed out -- it's accessed like I was going to get chemo through it, then a small amount of saline is injected to keep the line open. Takes maybe 5 minutes. I think it can be left in indefinitely as long as it's causing no problem and there is a possibility of further chemo. Aloha, Ned

Hey, Mitch, mighty proud of you! Much Aloha, Ned

That's great, Sharon!! Aloha, Ned

Hi, Shelli, welcome to LCSC. I'm on the patient side rather than on the caregiver side, but I can tell you that your story is all too common, disgustingly and sadly so. I've seen it repeated so many times in the 20 months I've been here, and you'll probably hear from some of those members shortly. You and your mom may never see the response you rightly expect from the relatives you mention, and that will probably remain a fact of life. The most important thing from the standpoint of your own health and well-being is that at some point (the sooner the better, though it may take a while) you need to "let go" or "release" these thoughts. They're harming you much more than the people who should be but probably aren't feeling them. Some of our terrific members may have specific suggestions on how you can do that. My Aloha, Ned

So happy to hear it, Muriel! Aloha, Ned

Thanks for the update, Max. These ole bods of ours just don't come back as fast as they used to. Take care, and Aloha. Ned

Hi, Barb, welcome to the group! I'm going into scanxiety mode myself, with a CT scan coming up shortly. Let us know how the PET turns out. Aloha, Ned

Wow, Denise, there ought to be a law against piling on. Or if there is, it's sure not being enforced. I hope better days are just ahead. Aloha, Ned

Hi, Arnie -- congratulations to you, and to your RN wife! It would be great if you'd convert your success story into a profile that will automatically attach to your messages, then help us greet some of the newly diagnosed people who join us here every week. Here's how: Click on My Profile above, scroll down to the Signature block, enter/update your information, 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. Aloha, Ned

Hi, Mary. I had this during the latter part of my Taxol/Carbo program, though my lungs were improving and my blood pressure and blood counts were fine. Somewhat SOB at times too. The onc decided it was a cumulative effect of the chemo. It slowly resolved after I went on Avastin only. Aloha, Ned

Hi, Shelley: I had the dry eye problem in late 2006 while on Taxol/Carboplatin -- used lubricating drops which gave some relief, but not much. But I do remember a number of years ago I had a similar problem, though not related to chemo, and used drops that were much thicker and provided a lot more relief (don't recall the name, but it came in little individual pop-open plastic vials). The down-side was they caused blurry vision and sometimes the eyelids would stick together in the corner. I'm on Tarceva now, and recently I thought that was happening again, but it turned out to be a common Tarceva side effect known informally as out-of-control eyelashes. They grow long, then curl in and touch the eyeball. I haven't heard of that happening with Alimta, but you might take a close look at her eyelashes and see if that could be happening, perhaps in addition to the dry eye effect. By the way, I'm delighted to see the Alimta is working! Aloha, Ned

Hi, Johnny, welcome to the group. You won't find a better place for support anywhere on the Web. It's easy to understand and imagine how the confusion may have occurred in the initial descriptions of your mom's condition. Some of the terminology is a bit strange, and that on top of the shock can certainly lead to misunderstanding. Here's a good reference on the various items that determine the staging of non-small cell lung cancer (NSCLC) -- every time I go back to it I learn something I hadn't noticed or appreciated before: http://www.emedicine.com/radio/topic807 ... nm_staging Some of the other things I was going to say, Don M has already said, and better. Let us know how it goes Tuesday and Wednesday. Best wishes and Aloha, Ned

Rick, have you been reading the responses to your message? We have a large, diverse, amazing group of people here who have plenty of first-hand knowledge and are ready, willing, even eager to help you through this. But there are just too many variables for us to give the best advice without a bit more detail. What are your symptoms? Where is the cancer located? What chemo drugs are you on? What side effects are you having? The possibilities run the gamut. Supplements? You have to be careful here, as some supplements are believed to interfere with various chemo agents. Mind-body medicine? A huge subject. To quote from Dr. Dan Labriola, Director of Naturopathic Services at Swedish Cancer Institute in Seattle (a highly regarded facility), "Mind-body medicine is high on my list of strategies including meditation, visualization, imagery, psycho-oncology, stress reduction, spirituality and more. Human studies suggest that there is benefit even though it is difficult to get clear data." Let us know what sounds interesting and in line with your views and comfort zone. Best wishes and Aloha, Ned

Hi, Jackie: I can't help you with the last part of your question, nor would I want to even attempt! But the first part is tailor-made for an item I posted at OncTalk some time ago. Here it is, and note that one of my points emphasizes the constipation issue as did beatlemike: >>>>>>>> I had an exploratory thoracotomy (right side) on 8/31/06. It began as a thoracoscopy, but all the tissue samples taken during the scope procedure were inconclusive, and the surgeon deemed it necessary to proceed with a full thoracotomy (muscle-sparing incision, ribs spread). This did confirm lung cancer, moderately-differentiated adenocarcinoma. Because of the various periods waiting for pathology, I was under anesthesia for a good while, and when I started to awaken in my room I was very groggy for what seemed an eternity. I was also overwhelmingly thirsty, and while not allowed to drink water, I took great pleasure sucking on a sponge stick moistened with ice chips. After I was more fully awake, I was surprised to find that the pain was not nearly as bad as I had expected. In fact, there was no pain at all except when I was moved for checking the incision and drains or for washing. When I became more mobile, I never had any pain while lying or sitting in a stationary position -- only while coughing or moving to get off or back on the bed. The epidural was removed from my back a couple of days after the surgery and oral medication was quite adequate. A five-day stay had been programmed, but I was able to go home after four days. There have been no complications. Today, 10 months after the surgery, there are still some numb areas on my chest and side, and maybe once or twice a month there is a random twinge from the incision area, but nothing more. I have some suggestions for things one can do before the surgery to make it easier when home from the hospital: 1. Make some advance preparations for sleeping. I found it much easier to sleep in a recliner chair than in a bed, mainly because getting up from or back into the chair did not involve any rolling to the side. If you have a favorite recliner chair you might consider moving it to the bedroom before going to the hospital so any furniture rearranging can be done while you're still able to participate. 2. As you go about your daily routine now, take notice of the items which you are frequently taking from shelves, cabinets, or drawers, and place these items in accessible locations that don't require any bending down or reaching up. When you get home from the hospital you'll be able to carry on many of your normal activities without calling on others for assistance. 3. Stock up now on the medications, food items, and supplements you and others have found most effective for preventing or relieving constipation. Many (if not most) pain medications tend to cause constipation, and I believe it's as important to stay ahead of that as it is to stay ahead of the pain itself. <<<<<<<< It's now been 20 months since the surgery, and I haven't had any discomfort from the incision for a long time. The skin surface from the incision around to the front under the right breast is still a strange combination of numb and touchy, something I hardly ever notice until the washcloth reaches that area when I'm in the shower. Best wishes and Aloha, Ned

That's said to be true in general, but there is not a 100% correlation. Some people receive excellent benefit with essentially no side effects, and some have severe side effects with little or no benefit. The best determination would be your next scan. Your last profile entry indicated "SOB much, much worse" on April 8. If you're on day 12 now, you must have started Tarceva around April 16. How was the SOB when you started Tarceva, and how is it now? That might be a good prescan indication of how well the Tarceva is working. Aloha, Ned

It seems to be one more side effect of the treatments. My blood pressure and blood counts are fine, and I still feel cold when everyone else in the family is comfortable, and comfortable when every one else is hot (it used to be the opposite). I've also noticed that I don't perspire like before, even if active on a day in the upper 80s. If I get into a closed car that's been out in the sun, I don't actually feel hot, but do get sort of a prickly, itchy sensation on the skin (I'm on Tarceva). It will be interesting to see what it's like when it gets warmer this summer -- maybe we can use air conditioning less and save on electricity! Aloha, Ned

Thanks for the update, Gail. Glad to see things are looking better now. Shrinkage already, that's great! Aloha, Ned

Cancer can -- and more often than not does -- bring about changes in the body that cause it to burn calories faster than normal. When a person is on cancer treatment it can be hard enough just to get the same amount of calories as before, but even more may be needed. When I was on Taxol/Carbo/Avastin in late 2006, I needed 3 cans of Wal-Mart's 350-calorie Ensure clone every day in addition to everything I was able to eat in order to maintain weight. Aloha, Ned

Patti, I think one of the main duties of a parent -- other than providing a safe and nurturing environment -- is to show by personal example how to handle life's many problems, including those which seem insurmountable. You've done that, and are doing that, admirably. "We can't always control events, but we can control how we react to them." Aloha, Ned

That's great news -- thanks for updating! The gold standard still has some oomph in it. Aloha, Ned

Thanks for the update, Mary. It's heartening to see that everything you and your husband went through produced some positive results. Much Aloha, Ned

Hi, Kathy, thanks for the upbeat report. Reading through your profile, I see you got off to sort of a rocky start -- I think it was a very wise decision to change docs. Aloha, Ned