recce101

ts wrote: Then I guess I'd better not suggest a "wanna see my incision?" contest for risk of being laughed out of the room! Maybe yours needed to be that long to provide access to all the stuff that needed to be removed. Mine was done to take tissue samples and to get the lung unstuck from the chest wall, where it had been shoved by the pleural effusion. Actually I had a lot less pain than I had expected, and I was off the pain meds except OTC ibuprofen within a few days, but any twisting motion still hurt for a long time. Yes, and still does after 30 months, with a weird numb-yet-touchy sensation in the front — which I usually don't notice until the washcloth hits that section in the shower. Ned

It was many months before I could get in or out of a bed or lie on a couch without discomfort. The recliner was MUCH easier, and that's why I'm constantly recommending it. After being home about a week I started gradually loosening up my muscles by carefully and slowly lying down on the floor flat on my back, then doing arm and leg exercises (NO twisting of the body at this point). Getting back up was a challenge and I sometimes asked for help to avoid too much twisting, but each day things got a little easier. I slept in a recliner for almost a year, and even now it's my favorite spot for a nap. According to my surgeon, the weird pain I was feeling in the front was referred pain from the side where the muscles and nerves had been cut. I had a full thoracotomy, with a 7-inch incision. Ned

SUPER ! The other Ned

Hi, Lori, welcome to the group! Your profile says you're in North Texas. Where? I graduated from North Texas State College (now UNT) in Denton in the late 50s, and my hometown for most of my childhood was West, just north of Waco on Interstate 35. But I was an Air Force nomad after my college years, then settled in Hawaii in 1972. Don't apologize for long posts — they can be very therapeutic! Aloha, Ned

Ellie, you did fine, and I'm so happy for your brother-in-law. If cancer got the better of me at some point, I'd be delighted to think my wonderful wife (now only 61) might find someone to share the rest of her years. In fact, it's hard for me to understand how anyone could feel otherwise. Aloha, Ned

Kerri, I'm so sorry to hear of your mom's passing. Her spirit and zest for life touched many of us, and of course that lives on in you. Peace and Aloha, Ned

Hi, Sandy, welcome to the group. There's nothing more awesome than a great mother-daughter team! Many of us have found that after surgery, especially the more invasive thoracotomy type, sleeping in a recliner instead of a bed has some advantages. In particular, it allows you to minimize the rolling/twisting motion which can be so painful while the incision and muscles are healing. Best wishes on your recovery, and let us know what we can help you with. Aloha, Ned

Others have said much the same thing. I think it's because the "real deal" concerns we share and the existence of the Internet allow us to connect at a fundamental level, completely bypassing the differences in appearance, dress, accent, and material surroundings that would usually absorb so much of our attention. Looking for better news soon! Aloha, Ned

Hi, Mary, and welcome! I haen't had radiotherapy myself, but from what I've read I'd say it's VERY common to have throat problems for a time after radiation to the chest. Aside from cough and hoarseness, some people have difficulty swallowing/eating for a few weeks because of esophagus pain and constriction. I've never heard of a case where a surgeon made such a point of suggesting a patient switch oncologists. It's really quite remarkable, and there must be something behind it beyond the problems you and your husband have had with this oncologist. Some patients do have valid reasons for not wanting to pursue a second opinion, but I don't know that it applies in your husband's case. I second Ellen's suggestion to check out cancergrace.org (GRACE, Global Resource for Advancing Cancer Education). Browse the site, and if you're as impressed as I think you'll be, register and ask questions. A lot of us are "dual citizens" and have the same usernames there as here. Best wishes and Aloha, Ned

Cheeseburger, as long as it's cheddar cheese, of course with my newly tolerable big slice of ripe tomato. The fries/onion rings are optional, and either is okay. Ned

Although I haven't experienced or heard of that as a side effect of Tarceva, while I was on Taxol I did occasionally get a bit lightheaded and short of breath if I stood up rapidly after being seated, similar to what people with low blood pressure sometimes report. My blood pressure and lung function seemed to be okay at the time, so my onc reasoned that it was probably due to cumulative effects of the chemo. Since your pop-pop is just starting Tarceva, his body is still trying to adjust to the medication, and I imagine lots of unusual effects are possible. But since he's had a recent bout with pneumonia, that could be the cause as well. Aloha, Ned

Added 3 entries to the log at the beginning of the thread. Side effects are very minor at this point. Scheduled for CT scan on March 30. Ned

Hi, Mona, welcome to the group. I was diagnosed with NSCLC Stage IIIb almost 30 months ago, and I'm still here and active. Read some of our stories, including mine via the link below, and don't pay any attention to statistics. Let us know what treatment is planned for your husband, and we can give you some helpful hints on dealing with side effects. Best wishes and Aloha, Ned

Nice play on words! Yep, should be automatic. If we wait till we "think" we're constipated, getting past the point of an easy fix is a definite possibility. Ned

Doug, count me in. I'll be sending you a PM (private message) in a little while with contact info. You may get a popup screen notifying you it's there, or you can click the New Messages link up next to your login name. Ned

It doesn't get any better than that! Well, I guess 7 years would... Congrats and Aloha, Ned

Wow, Doug, bummers on the busted PET scanner! You'd already finished the hardest part, from my experience. Let's hope the machine is in top condition next Wednesday. Do the docs think you're a candidate for surgery, assuming the PET shows no evidence of spread elsewhere? If so, that's terrific. In my case, exploratory surgery revealed that the tumor had invaded the chest wall, so removing it surgically was not feasible and getting a PET at that time would not have changed my treatment, so I had a regular CT and a bone scan instead, plus a brain MRI. I did get a PET after I'd been on treatment for a year to see if anything was still active, and it was, but still only in the chest. I'm now on my third line treatment and doing pretty well 29 months out from diagnosis. Welcome to the group, and let us know what sort of treatment is offered/planned. Aloha, Ned

Sandra wrote: I agree. But I think one psychological factor is whether or not it creates an "appearance" problem — does its presence cause you to limit your wardrobe when out in public? Are you constantly having to answer the question "what is that"? Some ports are quite inconspicuous. Mine, on the other hand, is the double chamber type that causes a prominent bulge just under my left shoulder. Doesn't bother me a bit, but if I were of the opposite gender (not planning to go that route any time soon ) I probably wouldn't want to wear any off-the-shoulder outfits. Another issue is whether it would be an inconvenience to go to the clinic every month to have it flushed out, as I did during the 16 months I was on Tarceva. Not a problem for me, but it could be for some. Aloha, Ned

Hi — cute photo! Since your pop-pop has been in a medical field all these years, he undoubtedly knows this, but sometimes we overlook the obvious for ourselves. The cancer has probably changed his various proteins and metabolism to the point that he needs more calories than before to maintain weight. So he probably needs to supplement as much of his regular healthy diet as he can handle with more high-calorie stuff. Like Ensure Plus (the 350 calorie form), the less expensive WalMart clone, and more tasty beverages like Carnation Instant Breakfast mix stirred into milk or a soy beverage. Ice cream too! When he gets ready to start Tarceva, be sure he's keeping his skin in good condition by showering with a non-drying soap (such as Dove Body Wash Sensitive Skin) followed up by a moisturizing lotion (such as Cetaphil or the unscented/hypoallergenic version of Vaseline Intensive Rescue). This will reduce some of the discomfort from the infamous Tarceva rash which starts about a week into the treatment. Plenty more tips on Tarceva side effects here: http://cancergrace.org/lung/2008/10/22/wird-egfr-rash/ http://cancergrace.org/forums/index.php ... 04#msg2904 http://cancergrace.org/forums/index.php ... 70#msg3170 Best wishes and Aloha, Ned

No, what you wrote was fine right here. But in addition, you might consider writing a detailed chronological post for the My Story forum and then placing a link to that in a signature/profile that will automatically attach to every message you send (like below). Then you can respond to others' messages without needing to do a lot of repetitive typing. Also, if you have a new question for the group, it's best to start a "new topic" in whatever forum seems appropriate, rather than adding it to an existing topic. That will ensure that more people see your question, since someone who previously responded to a particular topic thread may not open it back up to check for new messages. Aloha, Ned

Hi, Ann, welcome to the group. I see you just posted this a short time ago, but most of our mainland members are probably asleep by now and won't answer until Wednesday. I'm in Hawaii, where there are still a few hours left in Tuesday, so I'll respond to what I can. From your post, it's not clear to me (maybe it's not clear to you either) whether the mass removed from your mom's pelvic area was determined to be a metastasis from the original endometrial cancer. If that's the case, then the stage IV you mentioned would apply to the endometrial cancer since it had spread to other parts of the body such as the pelvic area (if confirmed) and probably the lungs (though biopsy was not done there). This may sound like a nit-pick, but in terms of treatment it's important to know the original ("primary") site of the cancer, since a malignancy that starts in one part of the body and spreads to the lungs has a different structure and set of characteristics than one that starts in a lung and spreads elsewhere. Basically, it's not called lung cancer unless it starts in a lung. Wikipedia says that Tamoxifen and Letrozole are related to estrogen production, which leads me to believe the diagnosis is still endometrial cancer. Sorry this got so convoluted — I hope the next paragraph is easier to follow. One never knows for sure, but I don't think it's possible to even guess without a couple more items of information. First, how is she feeling, functioning, moving about, communicating, etc.? Is she severely debilitated, or doing pretty well considering she just finished chemo? The other item you may not be able to answer right now, but it's important to know what the doctor said about the results of the scan. Did he say the tumors had responded to the chemo (shrunk or even disappeared), and that she could go into "watch and wait" mode or choose one of the drugs as a precaution against further problems elsewhere? That would be great! Or did he say that the tumors had not responded to the chemo and further treatment might be futile, but she could try one of the drugs offered? A big difference, certainly. Some of the wonderful ladies in our group who have some first-hand knowledge of these issues can give you better answers, but I think you can assure the best answers if you can fill in some of the gaps I mentioned above. My best wishes and Aloha, Ned

Teardrop: If your sister is not eating because she's feeling nauseated, there are good anti-nausea medications she can be given. If it's mainly a FEAR of becoming nauseated, that may be more of an anxiety issue, and there are other medications for that. In either case, neither of you should be worried about her becoming dependent on drugs or addicted — they are intended for times like this. About crushing the pills, check with the nurses. Some are okay to crush, but some are not. Radiation is intended to kill the cancer cells or control pain in the specific area where it's directed. With Aloha, Ned

Hi, Rhonda, welcome to the group. Collectively, I think we've seen every aspect of lung cancer from just about every perspective imaginable, and I doubt if there's anything you'll encounter that hasn't been experienced first hand by some of our members. So please ask any questions that come to mind, and vent your frustrations as often as you need. The reason we're all here is to help one another. Maximum congratulations to you and your mom for stopping smoking. Yes, it can be incredibly addictive. Now...you didn't give any hint of this in your post, but please allow me to jump ahead and urge you to NEVER EVER allow anyone, even yourself, to put a guilt trip on you or your mom for your past smoking. Although smoking is said to be the main cause of lung cancer, it's certainly not the only cause, and in fact adenocarcinoma is often called the "non-smoker's lung cancer" because it's the form most seen among non-smokers and never-smokers diagnosed with the disease. If you need any ideas on how best to respond to people asking insensitive questions or worse, we can definitely help! I hope you can find time to read some of the posts in the My Story forum and read the profiles at the bottom of the messages in any of the forums. My best wishes and Aloha, Ned

Hi, JRx, and welcome. Many of us are very familiar with those predawn hours. And more than practically anyone who's been part of your life so far, we truly understand what you and your wife and the rest of your family are going through right now. Please give us as much detail as you can, and we'll help you through this journey that you never expected to take. From what you write, I gather that your wife has been diagnosed with a lung cancer which has metastasized to the brain (rather than a separate cancer that started in the brain). These "brain mets" are of course an unwelcome complication that need to be dealt with promptly, but radiation oncologists now have some very effective means of treating them. Best wishes and Aloha, Ned

Several have asked about updates to "My Alimta Log." Though I've been adding log entries periodically, they have been edits to the original post (at the beginning of this thread) instead of new posts, so they haven't been showing up in the "View posts since last visit" feature that many of us use. This bump message should accomplish that. There's also a link directly to the log in my signature/profile. Thanks for asking, and so far so good — but I won't know if Alimta is actually working for a few more weeks. Aloha, Ned