recce101

Hi, Larry, welcome to the group. I'm sorry your dad didn't get more benefit from the Taxol and Carboplatin. That's a rather standard first-line treatment for NSCLC, but it simply doesn't work well on some people because of different body chemistry or variations in the cancer subtype. Let's hope the Tarceva is more effective, as it has been for many people. Some have remained stable for 2 to 3 years or more on Tarceva. Do you know your dad's specific NSCLC cell type (adenocarcinoma, squamous cell, or large cell) and when his next scan is scheduled? Has he had much problem with side effects? If you haven't already, please 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. The forum at GRACE has a section for Complementary and Alternative Medicine -- you can post your questions on supplements there and have them answered by a naturopathic physician at the same cancer center. Best wishes and Aloha, Ned

Renate, if you're using Internet Explorer, here's how to change the font size: http://lungevity.org/l_community/viewto ... 387#355387 If you're using some other browser or if it doesn't work, please send me a PM. Aloha, Ned

I love SandraL's approach -- proactive in the best sense of the word! Thinking back to my pre-cancer days, I can definitely recall being at a loss for what to say to acquaintances who had been diagnosed with cancer or some other life-threatening condition. I'm sure I came across as awkward, maybe even aloof or stand-offish. Basically, I was afraid that what I might say would be the wrong thing and unleash a flood of who-knows-what, so I said as little as possible. Now that the roles are reversed, I can see that same paralysis in longtime friends who I haven't seen for a while. I try to break the ice with some comment about my different appearance (oh, my beard -- my hair grew out sorta funny after chemo) and I probably tell them more about my cancer than they really wanted to know. But often I can see them visibly relax when they realize I don't mind talking about it, and the next time we meet is a lot more natural. Lilly, hope you have a GREAT time on that camping trip! Aloha, Ned

That's great, Gail. Sometimes we wish for the strangest things! One of these days you'll need to give us some background on those intriguing photos you post in your avatar space. Aloha, Ned

Love to hear these success stories! Congratulations and Aloha, Ned

Renate, I really hope the neurologist has something helpful to offer. Please let us know what he/she says. I feel very fortunate that my neuropathy resolved with medication. If it had not, and if I had run out of medical options, I believe I would have looked into acupuncture. That discipline is well established in Hawaii because of the significant Oriental influence, and while no one in my family has ever used acupuncture, several of our friends have been helped by it. A number of major cancer centers are now including acupuncture in their complementary and alternative medicine services. Just a thought! Aloha, Ned

Renate, neuropathy was my most serious side effect from Taxol. Please see this from a couple of months ago: http://www.lungevity.org/l_community/vi ... 181#348181 Are you still on neurontin (gabapentin)? My tingling eventually disappeared, but my onc still has me on the neurontin. Aloha, Ned

Happy to hear it, Jeannie! Let us know how it goes with the eyes. Aloha, Ned

Hi, Carol, thanks for writing. I'm another "airplane driver" in the group. Hope Ernie is feeling better. Aloha, Ned

Hi, Marianne, welcome! We have a good number of members who are doing very well with limited SCLC, and you've apparently read some of their profiles already. Please let us know what treatment is being planned for you. I suggest you also 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. Aloha, Ned

Same here, I don't know. But aside from that, it's a systemic therapy. Before you start, it would be a good idea to make sure your skin is in top condition -- moisturizing soaps, a good lotion like Cetaphil after a shower, etc. Might make the rash less bothersome. Aloha, Ned

That's terrific, Jen -- thanks for posting the good news! Aloha, Ned

Hi, Jeannie: Please check the discussions here: http://onctalk.com/bbPress/topic.php?id=344 I was one of the contributors to that topic thread, since I had considerable problems with vision while on Taxol. According to Dr. West's posts in that thread, the vision side effects of Taxotere can be even more than what I experienced. I don't know whether steroids, or the tapering off from steroids, can cause vision problems, but I wouldn't be surprised. If you post a question for Dr. West today, there's a possibility he might answer tonight (he posts a lot of answers from home after work). You can use the new cancergrace.org site and ask your question in the forums section. Most of us register with the same usernames there as here so we can recognize each other. Aloha, Ned

Hi, Lynn, welcome to the group! I'm sorry we males can be so difficult. It's not just Larry -- the same can be said for many of us. From childhood we're taught that boys don't cry, that we have to be strong and protect the "weaker sex," that we have to keep things stable when the ladies' emotions are bouncing all over the chart, and lots of other stuff. For most of our lives we can fulfill that role, since we're generally larger and stronger physically and our midlife hormonal changes are less extreme. But we all know, even if we don't admit it, that if we live long enough there will probably come a time when the roles shift and the female is shown to be the stronger gender. Even though I'm still quite capable, I'm starting to see some of that for myself. With much Aloha, Ned

Welcome to the group, Karen. I'll bet you're really glad you went through treatment in spite of the clear lymph nodes and the statement that they "got it all." Good for you, and good for your doctors. Many people after surgery are told they don't need chemo, then they come to regret it a couple of years down the road. You may be a newbie to this group, but you're definitely not a newbie to cancer, so please feel free to jump in with your comments whenever you like. Aloha, Ned

That's terrific, Gail -- such a relief. I'm delighted to welcome both you and Hank into the "doesn't take much to make me happy anymore" club! Aloha, Ned

So true, and then some! We live in a non-urban part of Oahu where people stay for generations and it seems everybody knows everybody else, and we know many dedicated and selfless doctors who willingly donate their time to scouting, youth sports, help for the homeless, medical missions to third world countries, and any number of other worthwhile causes. But I've never encountered anyone quite like Dr. West. He combines expertise in his field with a remarkable ability to communicate complex concepts to people like us, he keeps facts separate from opinion, he's compassionate yet realistic, he doesn't step on the toes of our regular oncologists, he answers our questions promptly, and he does this multiple times every day of the week with no expectation of monetary reward. On the contrary, he's put thousands of his own dollars into the new nonprofit GRACE (Global Resource for Advancing Cancer Education) and needs our help to keep the lights on and the links unbroken. GRACE is a 501©(3) organization, and tax deductible donations can be made via PayPal or mail. We need to keep this valuable resource alive and well! http://cancergrace.org/general/2008/05/ ... ort-grace/ Ned

Mary, thanks for the update. The best to you and Joe during his recovery from surgery. Aloha, Ned

Did you get the impression that your loculation (loculated pleural effusion) is something new, or that it just hasn't been discussed much before? That should be clear from your previous scan reports if you have those. Mine was there from before diagnosis, decreased some while I was on Taxol/Carbo/Avastin, decreased some more during my 8 months on Avastin alone, and has continued to decrease on Tarceva. A small amount remained at the time of my last scan early this month. Unless your effusion is something new, maybe the surgeon's feeling is that it will improve with the Avastin which you're getting every 3 weeks, as mine did. Aloha, Ned

That's great, Judy -- to team up with doctors who actually listen and adjust to what we say. Aloha, Ned

Hi, bikergirl, if you have the actual name of the procedure that's planned, it would be easier to determine what is involved. Your condition sounds something like mine when I went in for exploratory surgery in late August 2006 -- see my profile below. My surgery was initially planned as a thoracoscopy, a scope procedure through a small incision in the side, to drain fluid and get a biopsy to confirm the presence and type of cancer. When two sets of tissue samples turned out inconclusive, the surgeon decided to proceed to a thoracotomy (7-inch incision) during the same session. He then obtained samples positive for adenocarcinoma, and also found that the loculation (fluid trapped between strands of tissue in the pleural space) which had been pushing against one side of the lung had caused the other side to adhere to the chest wall. He freed the lung from the chest wall but could not get it to fully inflate because of the loculation. He drained as much fluid as possible, but did not attempt to clean out the entire loculation. Though I was told not to expect it, the loculation has slowly resolved during treatment and I now have practically full use of that lung. The only discomfort I've ever had from the surgery was from the incision area and the surface nerves reaching around to the front of my chest, never anything from the lung, chest wall, or pleura. I guess there are few pain nerves in that area, which is fine by me! Good luck with your procedure. Aloha, Ned

Hi, Marie, welcome to the group! Aloha, Ned

Gail, I agree with the others about calling the onc or considering a trip to the ER, but to answer your initial question, yes, I think so. That's the only explanation we could come up with when I developed SOB in the latter part of my Taxol/Carbo/Avastin program (see about halfway down my profile below). But mine was not continuous, only the first minute or so after standing from a seated position -- after being on my feet for a while, I felt better and could resume walking or whatever I was planning to do. It felt like what I would imagine low blood pressure would feel like, with the blood not being pumped to the brain fast enough when standing up, but that turned out not to be the case. SOB is an awful, helpless feeling, but I don't have to tell you that. I hope Dave gets it resolved soon. Aloha, Ned

Thanks, Rich, I hadn't seen some of those. Ned

Hi, Kristi: There's a rather extensive Glossary available here (link in the left column), but that may not be quite what you're looking for. In addition to that glossary, I do a lot of Googling, and I've seen some other lists on the Web, but not specifically for lung cancer. If you're willing to devote some time to that sort of project, I'd say go for it! Aloha, Ned