recce101

Hi, Jody, welcome to the group. My diagnosis is also adenocarcinoma stage IIIb (IVa in the new staging system), 4 months (6 cycles) Taxol/Carboplatin/Avastin, then 8 months Avastin alone, then Tarceva for the past 12 months (I'm still on it). Initlally had a huge malignant pleural effusion filling over 2/3 of the right chest, much of it loculated, which has slowly resolved over the past two years. You can read my details in the link below, but I just passed my 2-year anniversary, and based on how I'm feeling now (pretty good) I'm fairly confident I'll be around at least until anniversary number 3. Give us some more details when you have a chance. Best wishes and Aloha, Ned

Good idea. Allow the surgeon the pleasure of thinking he was the first to give you the good news, then you can do it again with the onc. You have plenty of good cheer to pass around, so have a great week! Aloha, Ned

I see in your profile that he had blood clots in the legs last spring. Is it reminiscent of that? Exactly where is the numbness/discomfort -- upper leg, lower leg, ankles, feet, all over? Does it feel like cramps? Is there tingling with shooting pains like electric shocks? Is there any swelling? Is the skin discolored? What did the doctors say other than it's probably due to the chemo? I had two leg problems while on chemo -- peripheral neuropathy, which is a common side effect of Taxol, and stasis dermatitis, which I already had in mild form but became much worse on chemo because of reduced circulation. I received medication for both conditions that was very helpful. Give us more details, and maybe someone else will have some ideas. (I saw Patti B's post just before I sent this.) Aloha, Ned

They were 3 years old on September 24.

Here's my first — and totally amateurish — attempt at a video with opening title and fade constructed in Windows Movie Maker. It shows Rosie and her twin sister Nikki (who lives 3 houses up in our cul-de-sac) playing rough in our front yard. The voices in the background are my wife and Nikki's owner. Hope you enjoy the 41 seconds: Ned

You're a winner, Kasey, in every sense of the word. CONGRATULATIONS! Aloha, Ned

Kim and Bev, have a great evening! Aloha, Ned

Marci, one more thing. If you're not already a member, 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 have "dual citizenship" so to speak, and have the same usernames there as here. I use the site and Q&A with Dr. West something like a second opinion in advance, so when I go in to see my own oncologist I'm well prepared to discuss my situation and any treatment changes that may be indicated. That appears to be your intent as well. Of course my onc respects my input and allows me to be a partner in my own treatment, and if he didn't he wouldn't be my onc. But I know what you mean about the energy needed to just think of making a switch. Depending on how the clinic or center your mom uses is set up, it might not be that difficult to change doctors. Aloha, Ned

Marianne, we MUST see a photo of your Halloween persona! Aloha, Ned

Marci, I agree that your mom needs another opinion and most likely another oncologist. As others have pointed out, her current doctor has a very distorted view of the evidence and does not appear ready to learn. Tarceva has proved effective for many people in addition to the "ideal" group of Asian women who have never smoked. I'd like to emphasize this point from cat127: This describes me. I've been on Tarceva 12 months so far, and my tumor has not shrunk, therefore by definition I have not responded to it. But what was left of my pleural effusion has continued to resolve, and by every other measure I'm in better condition than I was a year ago. Even if the new 4mm nodule that we're now watching becomes worrisome and I have to switch to something else, the Tarceva will have given me at least a year of quality life free of major side effects, and at my age a year is nothing to be sneezed at! Aloha, Ned

WAY TO GO, JOE!!! Aloha, Ned

Hi, Jeanette, welcome to the group! You've had a rough couple of months, that's for sure. From reading your post, it seems to me that you've received very good medical treatment so far and that some excellent decisions have been made by you and by others on your behalf. You should be getting some more answers in the morning when our mainland members wake up, but since it's still your yesterday evening in Hawaii I'll jump in with what I can tell you. Prognosis statistics. Since you used terms such as "statistically speaking" and "probably," it appears that these figures were presented to you along with some explanation of how they should be viewed, and that you understand they are just general averages/means for a very large number of people who received a similar diagnosis in the past. There are many factors involved, and some people do worse, while others do better, even much better, than these numbers. We have members who were given a prognosis similar to yours 1, 2, 3, or more years ago and are still doing well. You'll be hearing from some of them, and you can also browse through the My Story forum for some interesting reading. M.D. Anderson. I assume you're referring to the center in Orlando. We do have members who go there, and from what I've heard they are quite happy with it. One of them, "Judy in Key West" (username jaminkw) drives from Key West to Orlando every 3 weeks or so for treatment, and she can give you more details on the facility. So we're both Leos. My birthday is 1 day (plus 20 years) before yours. Best wishes and Aloha, Ned

Gabby, THANK YOU for the update. I was about ready to fire off another PM to see what was going on. Looking forward to more good news in the next report. Aloha, Ned

Well said, Randy. Sometimes we hesitate to post about good news when others are having so much difficulty, but it's important to at least update our profiles for the benefit of all concerned. Those of us with a good scan know full well that we're not "home free" and the next scan may show something troublesome. But I think we should take every opportunity to celebrate that "on top of the world" feeling even if we know it's probably temporary. Life is a journey, not a destination, so let's make the trip as pleasant as we can. I say this knowing my next scan is October 21, and what it says about that new 4mm nodule could be a game changer. Aloha, Ned

Thanks for the reference. Here's what the herbs and supplements section of the Sloan-Kettering website has to say: http://www.mskcc.org/mskcc/html/69413.cfm Whenever people ask about supplements, they should be reminded that what's good for the body may also be good for the cancer cells, which are part of the body, and that's NOT good! Aloha, Ned

Thanks for the info, Meeshy. I also take doxycycline, a 100mg tablet daily, and it does help. I'm sure of that because I ran out a couple of months ago, and after a few days without it my sore/splitting fingertip problem returned. That cleared up within a few days of resuming the medication. I wasn't familiar with the clobetasol propionate (I've been using clindamycin gel plus moisturizing lotion) but I bookmarked your post just in case. Aloha, Ned

I understand your mixed emotions, Patti, snce I have them too. But nothing diminishes the fact that we've both beaten the odds so far, you even more than me. "It's the worst it can possibly be" sounds more ominous than "it doesn't look very good," and both of those pronouncements are lying in the dust somewhere in the road behind us. I'm helping you celebrate! Aloha, Ned

Rosie's littermate ("twin sister") Nikki lives just 3 houses away in our cul-de-sac. They're quite a pair, especially on walks, and in our yard they play ROUGH! Maybe I'll post a YouTube movie when I get that figured out. Aloha, Ned

Hi, Jennifer, welcome to the group. Be sure the oncologist knows that the mouth sores are interfering with nourishment. Sometimes a special mouthwash can be prescribed to anesthetize the mouth and throat immediately before eating/drinking. This is most frequently done for patients undergoing radiation which affects the esophagus, but it might be helpful for severe chemo-induced problems as well. If you're unable to contact the doctor because of the upcoming weekend, an experienced pharmacist might be able to suggest a non-prescription product that can help in the interim. I had problems eating while I was on Taxol/Carboplatin in late 2006, but never to the point that I couldn't drink cool, smooth liquids -- Robert must be having a rougher time than I did. In extreme cases a percutaneous endoscopic gastrostomy (PEG) tube can be installed so liquid nourishment can be put directly into the stomach, bypassing the mouth and esophagus temporarily. When the tube is no longer needed, it is removed. See this: http://www.oralcancerfoundation.org/den ... eeding.htm Best wishes and Aloha, Ned

If acupuncture could remove the need for some of the painkillers, that might be worthwhile. Ned

Marci, you should be careful about supplements. What might be good for the typical person trying to maintain health and prevent cancer might not be good for a person who already has cancer and is on treatment for it. Some supplements can interfere with the action of certain types of chemo, and I imagine a lot of herbalists and acupuncturists are not really up on the subject. A naturopathic physician (ND) should be, but it would be best to choose one associated with a major cancer center. A number of centers now have a department devoted to complementary and alternative medicine (CAM). To check out a specific supplement, you can look here: http://www.mskcc.org/mskcc/html/11570.cfm Aloha, Ned

Caren, I fully agree with Sandra and Patti. It might help if you keep in mind that they are working for you, not the other way around! Aloha, Ned

Hi, Amy. There are many authoritative and current articles on WBR at another great site which a lot of us visit. The list starts here: http://cancergrace.org/google-search/?s ... br&start=0 Aloha, Ned

That sounds really rough! My best to Jim. Aloha, Ned

Hi, Michelle: Check here for a consolidated list of Tarceva posts at another great site, cancergrace.org: http://cancergrace.org/forums/index.php?topic=618 Somewhere in that group is the link to my own Tarceva story: http://cancergrace.org/forums/index.php ... 56#msg2856 Simultaneous with beginning Tarceva a year ago I also developed a case of shingles. Initially I thought it might be a Tarceva rash effect, but my family physician recognized the pattern and symptoms as being shingles and provided the appropriate treatment, which of course differed from what I was doing for the Tarceva rash. I wonder if something like that could be a possibility with your mom? Tarceva caused me some increased heartburn/acid reflux, which I've gotten under control with diet (primarily by eliminating tomatoes). It's believed that taking strong antacids can interfere with the effectiveness of Tarceva. I do have some diarrhea 2 or 3 days each week, but it's been more of an inconvenience than a major problem. Best wishes and Aloha, Ned