recce101

Hi, Marcia, welcome to the group. Ah, scanxiety! My own will be in full swing within a couple of weeks. I've been on the same treatment as you, but in a somewhat different order. Taxol/Carbo/Avastin 4 months, Avastin alone 8 months, Tarceva since October 2007. I haven't yet met the other NED, but at least I'm stable (as far as I know) and feeling good. Looking forward to seeing your report! Aloha, Ned

Could be either or both I would think, maybe on top of another condition. I assume he's not using a walker -- too macho male for that? Then how about a nice stylish cane? I agree that calling the onc is in order. Chemo puts a whole new dimension on things that we'd normally feel silly calling the doctor for. I seriously doubt that the onc or his staff would ever cause you to feel that you're overreacted in such a situation. Aloha, Ned

Sounds like a much more workable plan, Gail. Good shrinkage after two chemo cycles is very good news. I hope the breathing is getting easier. Aloha, Ned

SUPER! Aloha, Ned

Connie, I have a strong opinion on this, but instead of going on my usual rant whenever the subject comes up (and wreaking havoc with my normally fine blood pressure), please read the responses to a similar question in this recent discussion thread: http://lchelp.org/l_community/viewtopic ... highlight= Aloha, Ned

Most of us have been responding in the other thread here: http://lchelp.org/l_community/viewtopic ... highlight= Ned

That's wonderful, Bucky! Aloha, Ned

Hi, Connie, welcome to the group! The first few weeks are very hectic and stressful, but when your husband gets a specific diagnosis (cell type and stage) and a treatment plan, you should both feel a lot better. But I'm sure you know that, since you're a two-time cancer survivor yourself -- congratulations! Let's hope the rib fracture was not a result of the cancer, but a "lucky break" that allowed the cancer to be detected early! Best wishes and Aloha, Ned

Hi, Deb, it's good to hear things are looking up a bit. Best to you both. Aloha, Ned

Gail, looking for an encouraging update. Is Hank still in the hospital? Aloha, Ned

I definitely agree with that, Ernie, and thank you for all of the other wisdom in your post. Aloha, Ned

Hi, EA, welcome to the group! You and I are the only two people I know of (there MUST be others) who had a thoracotomy NOT to remove a known malignancy, but as a diagnostic procedure. Since yours has been inconclusive so far, that must be very frustrating for you. I hope you're recovering okay from the surgery. You obviously have a good grasp of the issues for and against surgery in a metastatic vs. nonmetastatic setting, but I might suggest you present your situation to Dr. West at GRACE/OncTalk to get his perspective. He practices in Seattle and is an internationally-recognized expert on lung cancer who gives high priority to promptly answering online questions from people like you and me. A lot of us here are also members of his original onctalk.com site (as well as the new cancergrace.org site) with the same usernames there as here. OncTalk has been recently folded into GRACE (Global Resource for Advancing Cancer Education), and all new registrations are being taken at cancergrace.org. You can post questions in the Forums area of the site. Best wishes and Aloha, Ned

Echoing Denise, STABLE IS GOOD! Thanks for the update. Aloha, Ned

Thanks for checking in, Judy. We'll still be here when your wireless gets fixed. Aloha, Ned

Jenn, many of us have used Avastin (bevacizumab). I was on it for a year -- 4 months in combination with Taxol and Carboplatin, 8 months Avastin alone. My only side effect was slow healing throughout the body, which is to be expected because of the way the drug works. Some people have also experienced headaches and elevated blood pressure. Initially, Avastin was not approved for people with brain mets, squamous cell cancers, and a few other conditions because of possible bleeding risk. Now that more data has been accumulated, it's believed that it is relatively safe for certain people in those categories, and that's the purpose of some ongoing clinical trials. Here's an excellent article on the subject: http://onctalk.com/2006/10/15/where-do- ... h-avastin/ Aloha, Ned

Gail, my first impression was that it sounds rather typical and much like what I experienced, but I went back to check my logs to be sure. In the entries, Day C2 is the day of the second chemo infusion, C2+1 is the day after the infusion (i.e., Neulasta day), on up to C2+20, then it's time for C3 (third infusion). I was unusually vigilant about checking the readings on the plastic spirometer I brought home from the hospital, since I was short of breath from the loculated pleural effusion in my right chest, couldn't get above 1000ml in the hospital, and the surgeon believed I'd need to have the fluid drained again and would never regain much right lung function. My first indication that he was wrong was when my spirometer numbers started increasing after beginning chemo -- they have now stabilized at about 2000ml. My usual background activity during the day was working in my garage shop doing various projects, most of which didn't require standing or walking for long periods. I would not have been capable of mowing the lawn during that phase of my treatment. Here is an excerpt starting with the second infusion: 10/24/06 C2 Second chemo session today, no problems. 97.1°F with their tester. No side-effects as of late evening, but Neulasta will be tomorrow afternoon. 10/25/06 C2+1 Morning 96.4°F, 1600ml. Still feeling normal, Neulasta this afternoon. 10/26/06 C2+2 Morning 1500ml, 96.8°F. Some constipation, took softener last night, milk of magnesia this morning. Feel okay, a little more sleepy than normal. No actual aches yet. 10/27/06 C2+3 Aches not as bad as previous cycle. Generally tired. 96.9°F, up to 1700ml a couple of times. Mouth not particularly sore, but everything tastes weird. 10/28/06 C2+4 More tired today. Took 2 naps. Some aches, but mainly fatigue. 97.0°F, 1500ml. 10/29/06 C2+5 Still tired, but maybe improving some. Main problem is sore left foot -- feels like boil under surface of left sole, but skin is smooth with no redness. 10/30/06 C2+6 Feel much better, but still have sore left foot. Some other areas, mainly where dry and cracked, also getting sore. Used Bag Balm. Will see onc tomorrow. 97.7°F, 1650ml. 10/31/06 C2+7 Saw onc, who gave antibiotic prescription due to nick on left heel which has become infected. 97.7°F, 1600ml. Energy returning, mouth almost normal -- tip of tongue is sensitive. 11/01/06 C2+8 Feet better, wearing socks. 1500-1600ml, 97.7°F. 11/02/06 C2+9 Wearing sturdy bedroom-type slippers outside, good! Energy is back. 98.3°F, 1600ml. Seeking balance between constipation and diarrhea. Eating more fruit. 11/03/06 C2+10 97.3°F, 1500ml. Left foot good, got blister on right [loose socks]. Good energy until late afternoon. 11/04/06 C2+11 97.6°F, 1600ml. Appear to have reached plateau, similar to first cycle, maybe 100-150ml better overall. 11/05/06 C2+12 Getting harder to beat 1500ml. Left foot fine, right has irritation on right side. Used new Longs ointment, covered with pad & sock before bed. Need band-aid on port scar again [shoulder strap irritation]. 11/06/06 C2+13 Right foot feels a little better. 97.6°F, up to 1500ml but not above. 11/07/06 C2+14 Right foot okay as of last night. Also noted that incisions for thoracotomy and port, which had been pinkish and sensitive, look normal again. Believe chemo-induced sensitive skin was the culprit for both. Still some discomfort (soreness, dull pain) just below right breast when coughing. 97.3°F, 1500ml with effort. 11/08/06 C2+15 Less discomfort when coughing. 1500ml, 97.6°F. Feet okay. Chest x-ray at Pali Momi. 11/09/06 C2+16 1450ml, 97.3°F. Took a nap. Feet okay. 11/10/06 C2+17 1500ml, 97.6°F. Needed nap in afternoon, felt okay generally. 11/11/06 C2+18 1600ml, 97.0°F. Good day, no nap needed. Stool soft, but not runny. Some irritation, maybe from paper. Used anti-itch cream after shower. 11/12/06 C2+19 Felt good today. Walked around lower half of cul-de-sac, did exercise bike and bar in afternoon. 97.1°F, 1550-1600ml. 11/13/06 C2+20 Good day. Walked in morning, exercise bar in afternoon, walked Hannah at night. 97.6°F, 1500ml. 11/14/06 C3 No problems during infusion. Felt good afterward, especially after Benadryl wore off. Aloha, Ned

Sounds like things are going well, Denise. Tom's a trooper, plus he's lucky to have you! Aloha, Ned

Tarceva does have side effects, mainly skin rash with some diarrhea and fatigue mixed in, but usually not the serious problems with blood counts like the harsher chemos can cause. So if a person is rather frail and it's thought that standard chemo might do more harm than good, Tarceva can be tried as a first-line treatment. Sometimes the response can be impressive. Aloha, Ned

Good show, Tiny, it's great hearing from you again! Aloha, Ned

Welcome to the group! The fact that your MIL is clear of detectable mets outside of the chest and therefore "limited stage" or "limited disease" SCLC is a big deal. That means it's potentially curable according to the experts. Since you have a medical background, you might like to read a current article on LD-SCLC by Dr. West at onctalk.com. There's a wealth of information on the site, primarily 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. I suggest you start with this article, Current Standards of Care for Limited Disease SCLC: http://onctalk.com/2006/12/01/soc-for-ld-sclc/ Best wishes and Aloha, Ned

This news was very hard. Raney joined the group about 2 months after I did, and she was one of the first members I corresponded with. We traded tips on side effects, since at one point we were on the same chemo regimen, and I joked with her that your family photo reminded me of the "soccer mom" that used to live a few houses down our cul-de-sac. I will always remember Raney, and your beautiful kids will carry her spirit forward. My Aloha, Ned

Yes, Linda, that's very unusual -- but what a wonderful problem to have! He must be one of those people with a strong inner need, even a compulsion, to help others, with no expectation of anything tangible in return. Do you do any sort of crafts? Scrapbooking, pottery, embroidery, woodworking, that sort of thing? I think something unique, "from the heart," would be more appreciated than an expensive case of wine or a gift certificate. Right now I'm looking at a handmade "gag" momemto I got from my office crew as I was leaving for another Air Force assignment in 1976, but all the shiny plaques I accumulated over the years are packed away! Aloha, Ned

Deb, that's a frequent problem, one I've had myself and still do to some extent. It's not just a matter of "doesn't taste good" -- that can be handled with a good dose of willpower and the desire to survive, as long as the item is not so gross as to cause nausea. The entire GI tract is affected, and many or even most foods can be irritating or actually painful going down. In addition, the stomach simply cannot handle the quantity that it did before starting the chemo. I still have a bit of that myself, though my other eating problems have almost resolved. Here are two of my earlier posts that go into more detail on these issues. You might also find the adjacent messages to be useful. http://lchelp.org/l_community/viewtopic ... 878#316878 http://lchelp.org/l_community/viewtopic ... 385#332385 Good luck! Very frustrating for you and for Dave, though in different ways. And the rules as well as the goalposts change from one day to the next. Aloha, Ned

You got me on that one! The only problem is, the photo would be convincing to some people. Aloha, Ned

Denise, there's a new topic thread at OncTalk that is going into all the intricacies of Medicare including parts A thru D and supplemental insurance. If you want to ask OncTalk a question, just register -- many of us have the same username there as here: http://onctalk.com/2008/04/08/medicare- ... parts-abc/ and http://onctalk.com/2008/04/09/medicare-part-d/ Aloha, Ned