recce101

Denise, thanks for the quote -- and for the "magnetic pull" that led you to it. Aloha, Ned

Hi, Brandy: Looking at your profile and some of the other tests your grandpa has been through, he will most likely find the thoracentesis to be a piece of cake. I had one in August 2006, a few days after a chest x-ray found a large quantity of fluid surrounding 3/4 of my right lung. The thoracentesis was done to aid my breathing, to give the CT scan machine a better look at the lung, and to do a fluid analysis. Though I was able to walk, they wheeled me into a small exam room in the imaging department. The radiologist asked if I wanted to watch the ultrasound display, I said sure, so I sat on the edge of the table while he arranged the monitor in front of me. Next was a small needle prick in the right side for local anesthesia, less painful than practically any dental appointment I can remember. He then inserted a long needle between the ribs and into the chest cavity, which I didn't feel at all though I could see the needle on the screen. He showed me the area of fluid he was heading for, then started drawing it out into a large container. He said I would feel the need to cough as the fluid was removed, and I did, and my breathing felt better immediately. The whole procedure took just a few minutes, then they wheeled me in for the CT scan. Following the scan the radiologist said there was still a lot of fluid visible, so they took me back into the exam room to try a second area. Same procedure, though hardly any fluid could be removed this time -- that's because it was "loculated" or trapped in little pockets of tissue throughout the pleural space. This resolved for the most part after a few months of treatment. I've heard of some people getting a collapsed lung because of the procedure, and I was restricted to a bed in the outpatient surgery ward for a couple of hours while they watched for any complications, but there were none and I went home feeling fine with no discomfort at all. I wouldn't hesitate to have another one if the need ever arose -- but I'm still trying to avoid dental appointments! Aloha, Ned

Congrats on the year -- and keep us posted!! Aloha, Ned

John, welcome to the group! Most of us around here know that prognosis statistics (which are given out much too freely by doctors who don't take the time to explain what they mean) are essentially meaningless for any individual, and are just averages/medians of a large number of people who received a similar diagnosis several years ago. You've seen that yourself with your wife's improvement. That's quite typical -- a particular chemo combination becomes less effective over time while the side effects tend to compound, so first-line treatment is usually limited to 4 to 6 cycles. Give us some more specifics -- name of drugs, etc. -- and we can be more helpful. Here's how to do a profile like you see at the bottom of our messages: Click on My Profile above, scroll down to the Signature block, enter/update your information, scroll down further, ensure Always attach my signature is marked Yes, and click Submit at the very bottom. From now on, your profile will attach to every message you send. Aloha, Ned

That sounds like a reasonable expectation, pretty much my own situation. Aloha, Ned

Hi, Lisa, welcome to the LCSC! It sounds as if your husband is getting excellent and timely medical care, and the fact that he's feeling well is another big plus. Some chemo effects are cumulative, while others do not seem to be. I haven't had Gemzar so can't give any personal perspective on that, but with Taxol/Carboplatin I found some of the side effects occurred mainly in the early cycles then diminished, while others gradually built up and didn't resolve until some time after those drugs were finished. Everyone is different! It's hard to say what's "normal" when it comes to cancer, but I have seen that pattern a number of times in this group. It's important that SOMEONE (presumably you in this case) is proactive, stays on top of things, and isn't afraid to make a few waves if the need arises. About your husband's approach, could he be a little bit in denial? If it's not that, maybe he simply wants to emphasize the positive over the negative and apply whatever mental energies he can to building up his body's own natural processes (Google "apoptosis" and read the Wikipedia article). That's my approach too, but I like to dig into the details as well. We males for the most part try to project a strong, in-control image, but it should come as no surprise to you that we are at least as complex and conflicted as the opposite gender! Aloha, Ned

Good for you, Sylvia, taking charge of your own life! You will be a great inspiration to the "newly diagnosed." Aloha from another IIIb, Ned

Thanks, Kasey, haven't seen that in a while...always inspiring. Aloha, Ned

Denise, you need to use an image editing program to reduce the width of the photos to around 300 or 400 pixels and the height to a proportional value. Check through the programs installed on your computer and see what you have available -- one of them should be able to do the job. Send me a PM listing what programs you have and I'll try to be more specific. Aloha, Ned

My onc prescribed Neurontin. I tracked him down by phone and he called in the prescription to my local pharmacy. The neuropathy was much better within a couple of days, but my onc said most people don't get better that fast. Another drug that's sometimes used is Lyrica, but I haven't used that. Please call your onc, and good luck. Aloha, Ned

Hi, Bucky. You'd probably get different opinions on this. For lung cancer, I'd say we're "getting there," and I believe it's helpful to think of it that way. For the majority of people, we're probably in a long, gray transition zone between terminal/fatal and chronic/manageable, and a lot depends on an individual's general health and how aggressive his/her particular cancer is. Again, just my opinion. Aloha, Ned

Hi, Tami: According to Dr. West at OncTalk, "There is little to no question that head MRIs are superior to CT scans in detecting brain metastases. MRI scans detect a greater number of lesions and define the location more readily, and they are also better at detecting spread to the meninges, the lining around the brain (and spinal cord)." Here's the full article, and there are a number of other articles on OncTalk that you might find helpful: http://onctalk.com/2007/04/05/intro-to-brain-mets/ Aloha, Ned

Amie, I'm sorry that your dad has reached this point, but the fact that he is accepting hospice as the next step should make it a little easier for the family to deal with events as they unfold. I don't have any first-hand experience with hospice, but I've heard many people say that the quality of service varies considerably from one to another, and opinions seem to be mixed on how in-home hospice compares with care in a hospice facility. If you have a choice between hospice organizations and modes in that area, you should speak to people who have used those specific services. I do have a suggestion on one thing you can do together with your dad. Some 25 years ago my wife wrote histories of two Central Oahu communities, and I accompanied her on numerous interviews with oldtimers -- immigrants or children of immigrants from Japan, China, the Philippines, Korea, Puerto Rico, or Portugal -- who came to Hawaii in the early 20th century to work on the rapidly expanding sugar and pineapple plantations or who were themselves born on the plantations. While I took photos of various items, she did a taped interview, sometimes resorting to the pidgin English common to all ethnic groups of that era. Their descriptions of life in those days, and especially their childhood memories, are priceless and, in a way, timeless. While your dad is still able to communicate I bet he would enjoy reminiscing about the old days, some of the funny things that happened to him, maybe some of the mischief he and his friends got into, and you might see a side of him you hadn't seen before or that maybe didn't seem all that interesting as you were growing up. My wife transcribed every interview in full although she used only a few quotes from each person in her books, and even today descendants of those who have since died contact her for more details on what plantation life was like for Grandma or Grandpa. While your dad and I may not think of our own childhood experiences as being that long ago or quaint, most people in the world probably do! Aloha, Ned

"You do have lung cancer, adenocarcinoma, and it doesn't look very good." Those were the words of my thoracic surgeon the morning of September 1, 2006, after a four-hour exploratory surgery the previous evening. The news was not a complete surprise. A chest x-ray and CT scan in mid-August had revealed a large pleural effusion in my right chest, the obvious cause of the nagging cough and lack of stamina I'd experienced for several weeks. And though no cancer cells were found in the fluid that was drained, and I hadn't smoked for 43 years, I knew that cancer was more likely than the "something else" I'd pinned my hopes on. So the surgeon's words were not really unexpected, but my reaction to them was. For reasons I don't fully understand, in that instant the apprehension I'd harbored for several weeks suddenly vanished, my view of life seemed to change, and I felt more "connected" than I'd ever felt before. Anyone who's interested in that or the other stuff running through my head in September 2006 can look here: viewtopic.php?p=258836#p258836 More on my earlier years is located at... viewtopic.php?p=333902#p333902 ...and a graphical summary of my treatment benefits and side effects is posted here (rotate the chart 90 degrees clockwise and zoom up to 100 percent): http://wvpress.com/grace/bvsev.pdf The following is a fairly detailed chronology of my cancer journey up to the present day. I've received very good medical treatment (three cheers for Medicare/Tricare) — my doctors are in sync with my positive outlook and understand my preference for quality of life versus longevity, I have great support from my family and friends, and for the most part I've had reasonably good response to treatment without unacceptable side effects. Since lung cancer didn't enter my life until age 71, I don't feel it's cheated me out of any opportunities that I hadn't already squandered through previous poor choices or inattention, and I'm looking forward to my remaining years and whatever comes next. JUL 2006: Good health except Meniere's Disease since 1994. Age 71, former Air Force and airline pilot, smoked 6 years 1957-1963. AUG 2006: Developed persistent dry cough, x-ray showed fluid or mass around right lung, 1 liter drained in outpatient thoracentecis, had CT scan, loculated fluid or mass still visible, unable to drain any more fluid, no cancer detected from fluid analysis. Exploratory thoracoscopy and thoracotomy on 8/31/06. SEP 2006: Home from hospital 9/4/06. Diagnosis: NSCLC Stage IIIb moderately-differentiated adenocarcinoma (2 clinically separate tumor nodules middle lobe right lung with invasion through visceral pleura into parietal pleura; one nodule resected for pathology; massive bloody pleural effusion, presumed malignant, with fibrinous exudate stranding the pleural cavity). Met with medical oncologist 9/12/06 and radiation oncologist 9/19/06. Had brain MRI plus bone scan 9/20/06 and port installed 9/22/06. Chemo to begin early October. MRI and bone scan were negative, so no radiation for now. OCT 2006 - JAN 2007: Began first chemo cycle on 10/3/06 with combination of Taxol, Carboplatin, and Avastin, plus standard premeds. Neulasta injection the next day. Given prescription for Ativan to use at home. Desired regimen: repeat every 21 days for a total of 6 cycles, then stop the Taxol/Carbo and continue with Avastin. Infusions were trouble-free; only noticeable effect was drowsiness and slurred speech during the Benadryl premed, which gradually faded throughout the remainder of the session. Post-infusion side effects were relatively minor during cycles 1 thru 4, but more pronounced in cycles 5 and 6. No nausea at any time, but still took Ativan the first few days of cycles 1 and 2 as instructed. Hair loss began two weeks after the first infusion. Most predictable effect: Fatigue, which began the second day after infusion and continued thru the first week and sometimes beyond. Other effects were sporadic during the cycle but generally concentrated in the first two weeks. These included: Constipation, usually resolved with stool softener at bedtime and prunes in the morning. Tinnitus (ringing) in both ears, rather loud at times, on top of "normal" tinnitus which I've had 24/7 in left ear due to Meniere's Disease the past 13 years. Increased drainage in tear ducts, nasal passages, and throat at random times throughout the day. Effect similar to dry eye syndrome, in which eyes feel dry and scratchy in spite of tear flow and vision is blurred. Mouth tissues and tongue irritated and sensitive, causing loss of taste with many foods and discomfort eating spicy foods or food with hard edges. Sensitive skin, in particular: thoracotomy and port incisions pinkish/touchy and irritated by clothing sliding over them; blisters, rashes, sore spots (hand-foot syndrome) appearing on feet in a seemingly spontaneous and random manner. Joint and bone discomfort during cycles 1 and 2. Shortness of breath, not a problem during cycles 1 thru 4 but very noticeable during the second and third weeks of cycles 5 and 6 when first standing from a seated position. Discussed with onc before cycle 6 chemo session. No adverse changes in blood pressure, blood counts, or lung sounds that would account for SOB. Possibly a cumulative effect of chemo over the past 3-1/2 months. Neuropathy, mainly in the feet, which began a few days into cycle 6. Feet numb with pins and needles, and some weakness in legs. Walking painful and balance poor — using a walker helped. Onc called in a prescription for Neurontin. Significant improvement after 2 days, walker no longer needed. FEB 2007 - SEP 2007: Treatment with Avastin only. Received 12 treatments at 21-day intervals. No side effects from the Avastin-only therapy other than generally slow healing. Residual side effects from the Taxol/Carbo gradually decreased or resolved. OCT 2007 - JAN 2009: Treatment with Tarceva began 10/10/07. Moderate rash started about day 5, mild diarrhea and fatigue about day 7. Introduction to Tarceva was complicated by a sudden outbreak of shingles which began a couple of days before starting the Tarceva. Discomfort from the shingles was minimal, possibly because of the Neurontin which I was already taking for neuropathy. By the second month, most side effects had stabilized — diarrhea mild and sporadic (no meds needed), fatigue mild, rash on head and upper body moderate and kept under control with Cetaphil lotion, Clindamycin gel, oral Doxycycline, and staying out of the Hawaii sun. For scalp, T/Sal shampoo or Johnson's Baby Shampoo supplemented later as needed with application of OTC scalp relief product (clear nongreasy liquid with same active ingredient as T/Sal). By the sixth month, split/sore fingertips finally under control using Cordran tape for flareups and Gloves In A Bottle for maintenance. FEB 2009 - MAR 2009: Treatment with single-agent Alimta. Except for some leg swelling, side effects were very mild. Unfortunately, there was also some disease progression. See detailed log here: http://tinyurl.com/clqz7w APR 2009 - FEB 2010: Old port which malfunctioned after 30 months was replaced with a PowerPort on 04/03/09. Treatment with combination of Cisplatin and Alimta on 04/07/09. This was a 3-day routine — B-12 injection and IV hydration, premeds (steroids and antinausea), both chemo agents, and more hydration on 1st day; additional IV hydration and a Neulasta injection on 2nd day; still more hydration on 3rd day; Decadron tablets and Emend capsules for 3 days clustered around infusion day. Left leg swelling subsided, but there was some new swelling in left arm. Received a third Doppler ultrasound exam, still negative for clots. Changed to a stronger diuretic (Lasix vs. Dyazide), which helped. Received echocardiogram on 04/14/09 to determine if heart insufficiency could be causing the edema; no problems detected. Fatigue, nausea, hearing, and vision side effects from Cisplatin were worse than from any previous therapy, and peripheral neuropathy plus hand-foot syndrome entered the picture a week after the infusion. Cisplatin replaced by Carboplatin, and the Carboplatin/Alimta infusions (less than 2 hours total including premeds) began on 04/28/09. Considerable fatigue the first half of each cycle with some mild edema at random times; shortness of breath and anemia (low and decreasing red blood cell, hemoglobin, and hemocrit numbers) more apparent after 3 months on Alimta/Carboplatin, but no other noticeable side effects. Iron and erythropoietin levels checked good, pulmonary function test did not reveal any problems other than some reduction in flows and diffusion capacity, so the worsening anemia is being attributed to bone marrow damage from extended chemotherapy. White blood cell and platelet counts have also edged into the below-normal range. Stopped Carboplatin due to neuropathy and further deterioration of red blood cell counts; resumed Alimta alone as of 11/24/2009. Feeling better, and blood counts are slowly improving. FEB 2010 - PRESENT: Began treatment with Navelbine on 02/16/2010. Planning weekly infusions for 3 weeks, then a week off. Third treatment canceled due to low WBC counts — received Neupogen injections instead. Also received prescription for Reglan to counter indigestion and constipation. Resumed Navelbine schedule, but at a reduced dosage. Again, third treatment canceled and Neupogen received for low WBC counts. Next came a 4-week chemo "vacation" for hernia surgery — resumed chemo on 04/13/2010 on a two-weeks-on, one-week-off schedule. Blood counts are slowly recovering, and side effects from the Navelbine are the mildest of any treatment I've had to date. But on 03/02/2011 received another brain MRI because of new imbalance problems and a short period of garbled speech. This revealed extensive brain mets, so 10 sessions of WBR were begun on 03/03/2011. Continuing Navelbine for now. TEST RESULTS AFTER START OF TREATMENT: 11/8/06 chest x-ray: Situation stable. 11/28/06 CT scan: Existing masses/densities/lesions have decreased in size and no new areas of concern have developed. 12/16/06 chest x-ray: Stable, no adverse changes. 1/30/07 CT scan: All existing masses/densities/lesions are stable and nothing new of concern has appeared. Right hydropneumothorax somewhat smaller with slightly less fluid in the right pleural space. Cleared for Avastin only. 4/2/07 CT scan: Another spurt of improvement after 3 cycles of Avastin only. Less fluid in right pleural space. Existing lesions are stable or somewhat smaller. None are larger and no new areas of concern have appeared. 6/25/07 CT scan: No significant change from previous scan. Persistent right hydropneumothorax. Continue Avastin, scan again in September. 9/21/07 CT scan: Pneumothorax "resolved." Loculated pleural effusion smaller (now "mild to moderate"). Onc's tap test on right side more like the standard hollow log than the previous wet sack. Various nodes, nodules, densities in region remain stable. Nodule in right middle lobe somewhat larger (2.8 x 3.8 cm) but still smaller than on 11/28/06 and 1/30/07. Will receive PET scan to see what activity, if any, is present. Stay on Avastin for now. 10/1/07 PET scan: Continued hypermetabolic activity in right lung and pleura. No abnormalities in left lung or pleura. No liver mets, no adrenal mets. Stop Avastin, begin Tarceva. 12/7/07 CT/PET scan: Almost identical to previous scan — persistent hypermetabolic activity in right lung and pleura, no suspicious areas elsewhere. This stability along with better lung sounds (stethoscope and tap) plus increased energy and stamina point to modest overall improvement. 2/6/08 CT scan: Stable to slightly improved. 5/1/08 CT scan: Stable, no evidence of metastatic disease. Energy and stamina continue to slowly improve. 7/28/08 CT scan: Stable except for new 4 mm nodule on the front periphery of the right upper lobe. 10/21/08 CT scan: The 4 mm nodule has grown to 5 mm, and a few other 4-6 mm nodules have appeared in the right lung. Feeling good, will stay on Tarceva for now. 01/21/09 CT scan: No evidence of mets, but new nodules in right lung have continued to grow. Stop Tarceva, begin Alimta. 03/24/09 CT scan: Some additional growth of nodules in right lung, and several new nodules (2-3 mm) have appeared in left lung — there's no longer any doubt that we're Stage IV. Added Cisplatin to Alimta, then replaced Cisplatin with Carboplatin. 05/28/09 CT scan: "No significant changes" — after several months of slow progression, stability has been achieved once again. Continue Carboplatin/Alimta. 08/03/09 CT scan: Right lung stable. Slight increase in left lung nodules, but not enough to be considered progression. Continue Carboplatin/Alimta. 08/10/09 brain MRI and bone scan: Repeat of scans done in 2006. Still no evidence of brain/bone mets. 10/26/09 CT scan: Multiple small nodules remain visible in both lungs. Some have increased about 1 mm in size since August, about the same increase that occurred between May and August. Continue Alimta, but stop Carboplatin due to side effects. 02/03/10 CT scan: Continued progression of nodules in both lungs, but no evidence of mets outside of chest. Stop Alimta, begin Navelbine. 05/17/10 CT scan: Nodules in both lungs are smaller, and there are no suspicious findings elsewhere. Continue Navelbine. 08/10/2010 CT scan: Some additional tumor shrinkage in right lung, left lung stable, abdomen and pelvic area continue to be "unremarkable." 12/01/2010 CT scan: Stable and unremarkable! 03/03/2011: Brain MRI reveals evidence of "extensive intracranial metastatic disease" and is highly suspicious for leptomeningeal carcinomatosis. Yuk!

Hi, Denise, welcome to the group! It's great that your husband is responding to his first line chemo -- that's a very encouraging sign. I'm curious about the username. Is there an aviation connection? Aloha, Ned

I think that's a good approach, Connie, one that I will get around to shortly. One reason I hadn't done a My Story is that I've told it in a reasonably complete manner in various posts, and the other reason is laziness. But having all of them in one place sounds very useful, and I'll do it -- that is, if I haven't already and just forgot about it, which is possible too... At the same time that I compile My Story, I'll put a link directly to it in my profile, which I've learned is quite easy to do -- right-click the little icon at the top of the post, select "Copy Link Location" (in Firefox) or "Copy Shortcut" (in Internet Explorer), and paste into the profile. Aloha, Ned

Hey, Ernie, that's fantastic -- color me jealous!! I hope you got to wring it out a bit, pull some G's, fly on your back and look up to see the ground, all that good stuff. Keep doing what you're doing, having fun! Aloha, Ned

Hi, Michele: This article from OncTalk by our much appreciated Dr. West should answer your questions: http://onctalk.com/2007/04/05/intro-to-brain-mets/ In a nutshell, it states that for NSCLC, there is no clearly established standard as to whether an MRI of the brain should be included in a patient's initial workup. It also explains why an MRI is superior to a CT scan and especially superior to a PET or CT/PET scan for detecting brain mets. My diagnosis is NSCLC (adenocarcinoma) IIIb. I had a CT scan, bone scan, and brain MRI before starting chemo. My PET scan didn't come until a year later (see my profile). Aloha, Ned

I believe you should, Robyn. What works for one person doesn't always work for another, and vice versa. Also, some treatments have far fewer side effects than others. Aloha, Ned

Hi, welcome to the group! Wow, what a compliment! Though I concede you may have been thinking of the "other" NED, which is an acronym representing "no evidence of disease." There's a glossary link in the left column that explains many terms. In addition to that, the most current, authoritative, and understandable resource is Dr. West's onctalk.com. While OncTalk has its own search function, that covers only the forums section of the site, and your most complete results will come from using a Google search restricted to OncTalk. That's especially easy if you have a Google toolbar installed in your browser. In the Google window, type site:onctalk.com followed by a space followed by your search term (which can be a single word or a phrase surrounded by quote marks). Here are some examples of what you could type in a Google window to answer your specific questions: site:onctalk.com imrt site:onctalk.com bac site:onctalk.com radiation "pulmonary artery" OncTalk will soon be moved to a new site which will incorporate a special window for this type of Google search. Aloha, Ned

99 bottles of beer on the wall... Aloha, Ned

Hi, Lisa, welcome to the LCSC! It's great that you got through the surgery with flying colors and are doing well. Your story should be very encouraging to new members just starting the cancer journey. Best wishes and Aloha, Ned

Hi, Hidilynn, welcome to the group! I'm delighted that Alimta has been working well for you -- not only for your sake, but also as encouragement for others who may have that drug in the future. Best wishes and Aloha, Ned

Gail, I'm with you 100% and as much more as I'm allowed!! Prognosis statistics are a hot-button subject with me, and I'm sure some of our longtime members are thinking oh no, there goes Ned again on his favorite rant. All anyone can tell you is the average/median survival time for a very large group of people who received a similar diagnosis several years ago. If we're talking about stage IV, you can imagine that the spread of data points (individuals) was very wide -- some people were quite fit at the time of diagnosis, others were in a very bad way, and everything in between. Some people were diagnosed rather early (often by accident while they were being checked for something else) and others had put off seeking medical help at all until their symptoms were severe. Some of the latter group probably died within weeks of diagnosis, while others were still alive when the study was closed. The prognosis clock begins at diagnosis; it's not backdated to when diagnosis "might have been made" if the proper tests had been done when they should have been done. So this average/median data is essentially meaningless for any one individual. I didn't ask for or receive any of this "information" myself, and only now, 18 months out from diagnosis (IIIb with malignant pleural effusion which will be IVa in the new staging system) am I starting to get curious as to what I would have been told. When I'm 24 or 30 months out from diagnosis I might be ready to hear that it would have been something less than 12 months. Aloha, Ned

Hi, Gail. From what I've read, going back to a previous chemo is usually not done because the cancer has mutated enough to become immune to it and/or the toxicities from the previous treatment are still in the body and will be further increased with additional use of the same drug. Dr. West at onctalk.com has written about both of these issues. If a particular drug was still working to a degree when it was stopped, then it might be tried again later if no better options exist. I'm sure Dr. West would be happy to discuss the latest research. Aloha, Ned