recce101

A big Happy Birthday to Muriel! Ned

That's right, Geri — like they say, somebody's gotta do it! I really enjoyed your post. Made a nice end to a nice day. And it reminded me that today's was the first Thanksgiving dinner since 2005 that I've actually been able to taste! Much Aloha, Ned

Brilliant!

They're two of a kind, aren't they! Welcome back, Fred.

Happy Birthday, Randy! Ned

Congratulations, Dana — looking for those pics! Aloha, Ned

Great photo! But you've got to watch those guys in uniform. Ned

Good show, Bruce! Aloha, Ned

Nick, just to clarify — when you say he's a vet and retired, I assume you mean he spent a few years in the service then retired from something else, rather than being a military retiree with 20+ years service, right? If so, and assuming he's not on Medicare with a good Part D drug plan, then the applicable drug company's charitable foundation would most likely be the best route. I've heard that qualifying for that type of assistance is not unreasonably difficult, certainly not as hard as qualifying for Medicaid. Ned

That happens a lot. With too many doctors, lung cancer is the last thing they think of when examining a non-smoker or never-smoker for a lung problem. That's slowly changing. Next time you see your oncologist it might be interesting to ask if some of the tissue they used to get your adenocarcinoma diagnosis was also sent out for molecular testing (EGFR mutation). I think there's a good chance you have it, hence your excellent response to Tarceva. I'll be sending you a PM shortly about the links, etc. Aloha, Ned

Welcome to the LCSC, Gail! Your story will give much hope and encouragement to the new members we see every week, many of whom are also stage IV. Please help us welcome them, and consider including a link to your story in the signature/profile block that will attach to all of your messages. For all: Please see Gail Redmond's remarkable story here: http://lungevity.org/l_community/viewto ... 574#376574 A technical question for Gail: Your response to Tarceva has been exceptionally good. This degree of response has been seen most often (though not exclusively) in patients with some or all of these characteristics: • Gender: Female • Race: Asian • Smoking status: Never smoked • Tumor type: Adenocarcinoma • Molecular testing: Tissue tested positive for presence of EGFR mutation From your writeup I know you meet at least 2 of the 5. When you mentioned being "a candidate for this medicine," do you know what factors your oncologist was considering? Testing for the EGFR mutation has not been done routinely in the past (I didn't have it), but recent studies indicate its presence may trump the other factors. Here's a good discussion on the subject: http://cancergrace.org/lung/2008/11/03/ ... ion-diffs/ Best wishes and Aloha, Ned

Happy Birthday, Patti!!! Aloha, Ned

Thanks for the update, Nancy. I'm relieved 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 are "dual citizens" and have the same usernames there as here. Dr. West has written about constipation issues recently, and he is always interested in hearing others' experiences so he can be even more helpful to the next person with a similar problem. Please check out GRACE — I believe you'll be impressed. Ned

WAY TO GO, KATIE! Aloha, Ned

Hi, Nancy, welcome to the group. I believe your instincts are right on target and that a trip to the ER is warranted, unless the onc nurse has gotten back to you with something that has resolved the problem. I also believe there is no such thing as overreacting when a person on chemo is having difficulty. This even extends to minor cuts which are showing signs of becoming infected, things we'd normally feel silly reporting to a doctor. During my chemo I was put on oral antibiotics three separate times — first for a port incision that had become inflamed, then for an open blister on my foot, and then again for the port incision. In each case I was surprised that my onc took these "minor" problems so seriously, but the upside is that I never needed any interruptions in treatment to deal with an infection or other complication. Constipation is a very common side effect of many chemo agents, and especially pain medications if and when those are required, and I think it's just as important to stay ahead of the constipation as it is to stay ahead of the pain. After this immediate situation is taken care of, there are plenty of preventive measures to take, and I'm sure you know them as well as anyone here. I think overall it's better to err on the side of keeping things a little loose, keeping up with the fluid intake at the same time. Looking for a good report soon! Aloha, Ned

Thanks — that's another good one. Ned

Hi, Jeanette, thanks for checking in with an update. I among many others have been wondering how you're doing. As Connie said, there are several places you can post, and it doesn't make much difference for general comments and questions about your treatments. We do have a special forum for test results (Test Time / Updates), and there's the Just for Fun / Off Topics forum which sees a lot of activity. One thing I'd suggest is that whenever you have a new question for the group that you want the max number of people to see, start a new topic thread for that question instead of sticking it at the bottom of some other thread (some will miss it if they've already read or responded to the first message in the thread). I didn't have the same chemo combination as you're getting, but I think most regimens have a similar fatigue pattern — feel fine for a day or so after the treatment, partly because the premed steroids are still active, then rather tired for 2-3-4 days, then the energy starts to return. Aloha, Ned

Hi, Diane, welcome to the group. I hope things start to move faster for you now, and that you get the PET and biopsy results quickly so you can start chemo and/or radiation if cancer is confirmed. If you get scheduled for chemo, give us the names of the specific drugs so we can give you some help with side effects. Best wishes and Aloha, Ned

Hi, welcome to the group. I think most of us agree that the beginning is the most stressful time, not only for the patient but also for loved ones. Nausea is not nearly as common as it once was, since very effective anti-nausea medication is routinely given along with the chemo. It must have been an oversight that she wasn't given a prescription for one to take at home, and I hope that can be corrected before her next treatment. If your sister is in good general health, there's every reason to believe she can tolerate her chemo well and receive good benefit from it. The first 4 months were the hardest for me, but since January 2007 I've been feeling pretty good, certainly better than when I was diagnosed in the summer of 2006. When you find out what specific chemo your sister is receiving, let us know so we can give you the best information. And bless you and your family for sacfificing in order to help her. Aloha, Ned

Same here. Ned

I'm so sorry, Rana. It's incredibly hard to start such a talk with someone slipping away, unless the subject has been part of the conversation for a while. The suggestions for putting it in writing or "backing into it" from your side are good. During a difficult period my dad broke the logjam in his own way by saying "I sure hope I kick the bucket pretty soon!" With my wife's dad we got into the conversation sideways, discussing the death of a mutual friend first, then gradually moving into his own desires and reminiscing on our lives together. They seemed to appreciate the fact that they could now talk freely without needing to overcome any denial on our part. Best wishes and Aloha, Ned

The Feedback link at the bottom of the video window only sets up an email to report on issues with the video player. But if you go to the main Today page... http://today.msnbc.msn.com/ ...and scroll down to the bottom, in the left column there's an email link to... today@nbc.com ...which might be the best we can do. I didn't see a place to leave online comments that would be accessible to others on the web. I imagine the volume would be overwhelming. Ned

That was terrific, the best I've seen. The only thing missing was a mention of Lungevity. Maybe there is a comment section on MSNBC where we can post. I'll look later today. Thanks, Connie. Aloha, Ned

Patti, I'm very sorry the Tarceva didn't work for you. I'm still on it, but there are signs it's running out of steam. I'll be watching for members' comments on Navalbine too. Aloha, Ned

Reed, I see Dr. West has already answered your question on cancergrace.org, although he's currently at a major conference in Chicago and making a couple of presentations there. He must never be without his laptop. Aloha, Ned