Barb73

This is to let everyone know where we are at this moment in time. Bill is in bed and mostly confined to that position. However, we have a healthcare worker, who for the most part, is a Godsend. She comes in at 7 am, and gets him going by initiating exercises. He has an overhead trapese, and gets his arms working. That includes both arms, including the right arm which is immobile. My message is that we should try to find a positive witnin each day, and extend it as far as possible. Each day, ask yourself, what are my blessings for today? Hopefully, you will find that you have some that may help you. Love you all, Barbara

Thank you, Judy. If you can find the name of that ointment it would be very helpsul. Barbara

The latest is that we will be putting Bill on a (Foley) catheter for the urine. It will help greatly in keeping the wound from being inundated with urine - a giant help. The antibiotic that his nurse requested was refused by our doctor (GP). Why? Who the hell knows? But, he is not the end all - be all. A higher power is. Despite that, we will do our darnedest to get him whole again where he was prior to the bed sores. Presently, he has the classic one - sacral (sacrum) area. We will be receiving more nursing care for the wounds. The answer was that he will be receiving four days a week extra care for the wounds. Thank you, God. Thank you, Lord. Barbara

It is with deep sadness that I post the obituary of Linda Johnson, (Meadowbreeze). Her kindness to me over the last few years, and her indomitable spirit will be remembered always. She and I were online friends when we belonged to LCA (Lung Cancer Alliance). http://www.legacy.com/obituaries/mycent ... =140556648 Barbara

Katie, Thank you for the support. I am of like mind when you describe what you wanted for your parents. The same goes for me. It will be, if I can help it, when Bill is ready and not a minute sooner. As for the medications, Bill has been on a Fentanyl 25 mcg patch, and very little else. Since this hospice began, he has had a 1/2 Percocet on two occasions. That's about it. He remains lucid and it is so much more pleasant when he can talk to us and relate to what is going on around him. He is in no pain, and we do hope that continues. Your input in relating your experience has given me the bolstering I needed. Tonight, we are experiencing such very strong easterly winds that our American flag ( on pole on front lawn) is in shreds. Gratefully, no blackouts as yet and hoping that there won't be any. Barbara

Thank you all for the input on the antibiotics. Today, I was able to get hold of our GP, and after explaining to him about the need for something for the sores, he ordered an antibiotic to put into them. I don't know how this will work as opposed to an overall ingestable antibiotic, but it should be able to do something. We will be using it tomorrow as it was not available late today at the pharmacy. Hopefully, we will get it by morning. Barbara

It turns out that Bill has developed two bed sores, one of which has an infection. The hospice nurse couldn't get hold of our doctor (he is on leave for a week and will be back soon). She contacted another doctor (I don't know him), and he said that because Bill is on hospice he wouldn't recommend giving the antiobiotics for the infection. This, of course, would mean that the infection could become systemic, and Bill would be in a compromised position regarding the spread. I feel very uncomfortable with the decision as Bill has been eating well, and able to leave the bed (by way of the Hoya Lift), and is communicating with us. My thought is to ask our doctor (when he returns) as a second opinion (actually, should have been the first) whether he agrees with this stance. Thank you for any comments on this. It would be so appreciated. It is not that we are trying to keep Bill alive at any cost, but that we don't think that antibiotics come under the heading of aggressive treatment. Any thoughts? Barbara

http://www.cancerconsultants.com/sterot ... etastases/ ARTICLE: . . . . . . . . . Patients with newly diagnosed brain metastases who undergo sterotactic radiosurgery plus whole-brain radiation therapy experience significant memory loss; therefore, stereotactic radiosurgery alone is the preferred method of treatment for these patients, according to the results of a study published in the Lancet Oncology.[1] For decades, whole-brain radiation therapy (WBRT) has been the standard treatment for patients with brain metastases. However, stereotactic radiosurgery (SRS) is a more precise treatment that delivers a high dose of radiation to a highly defined target—in other words, the radiation is delivered directly to the cancer while sparing the healthy surrounding tissues. In recent years, SRS combined with WBRT has shown a survival benefit over WBRT alone. Now, however, researchers are evaluating whether SRS alone can provide the same benefit to patients while subjecting them to fewer side effects. Researchers from the M. D. Anderson Cancer Center conducted a study that included 58 patients who had one to three brain metastases. The patients were assigned to receive SRS alone (30 patients) or SRS plus WBRT (28 patients). The study was stopped early due to a decline in learning and memory function four months post-treatment in patients receiving SRS plus WBRT—52% of patients receiving SRS plus WBRT were likely to have significant learning and memory decline compared with 24% of those receiving SRS alone. In addition, there were differences in survival between the two groups, though the reasons for this discrepancy are unclear. One theory is that systemic therapy was postponed during radiation, and this could have contributed to a decrease in survival. The median survival for patients in the SRS group was 15.2 months compared with 5. 7 months in the SRS plus WBRT group. Patients in the SRS plus WBRT group were 2-2.5 times more likely to die of neurologic or systemic complications than patients receiving SRS alone. The researchers concluded that SRS alone (in addition to close monitoring) is the preferred treatment for this group of patients in order to preserve quality of life, learning, and memory. . . . . . . . . . (Cancer Consultants, Chang EL, Wefel JS, Hess KR, et al. Neurocognition in patients with brain metastases treated with radiosurgery or radiosurgery plus whole-brain irradiation: a randomized controlled trial. Lancet Oncology. 2009; 10: 1037-1044.) Disclaimer: The information contained in these articles may or may not be in agreement with my own opinions. They are not being posted with the intention of being medical advice of any kind.

http://www.cancerconsultants.com/smokin ... -survival/ ARTCLE: . . . . . . . . . Quitting smoking after a diagnosis of early-stage lung cancer may reduce the risk of cancer recurrence and death. These results were published in the British Medical Journal. Lung cancer is the leading cause of cancer death in the United States, with an estimated 159,000 deaths each year. Smoking cessation is known to reduce a smoker’s risk of developing lung cancer, but less is known about the effect of smoking cessation after a lung cancer diagnosis. To evaluate the effect of quitting smoking after a lung cancer diagnosis, researchers evaluated information from several previously published studies. Most of the studies focused on patients with early-stage lung cancer. Among patients with non–small cell lung cancer, those who continued to smoke after diagnosis were almost three times more likely to die and almost twice as likely to experience a cancer recurrence as those who stopped smoking. Estimated five-year survival in 65-year-old patients with early-stage non–small cell lung cancer was 33% among those who continued to smoke and 70% among those who quit smoking. Among patients with limited small cell lung cancer, those who continued to smoke after diagnosis were roughly twice as likely to die and more than four times as likely to develop a second primary tumor as those who stopped smoking. Estimated five-year survival in 65-year old patients with limited small cell lung cancer was 29% among those who continued to smoke and 63% among those who quit smoking. Although earlier smoking cessation would likely provide greater benefits, the results of this review suggest that smoking cessation after a diagnosis of early lung cancer may improve outcomes. . . . . . . . . . (Cabcer Consultants, British Medical Journal, Published January 21, 2010) Disclaimer: The information contained in these articles may or may not be in agreement with my own opinions. They are not being posted with the intention of being medical advice of any kind.

http://www.send2press.com/newswire/2010 ... -003.shtml NEW TREATMENT GUIDE OFFERS HOPE, EMPOWERMENT. ARTICLE: . . . . . . . . . HOLLYWOOD, Calif., Feb. 25 (SEND2PRESS NEWSWIRE) -- Lange Productions announces today that "Be a Survivor - Lung Cancer Treatment Guide" (ISBN: 978-0-9819489-1-1) is the first book to offer a new approach to this frightening disease. It empowers patients to seek a cure, rather than accept defeat; to approach their diagnosis with hope, and shows them how to seek out effective treatments. "Today lung cancer is not the automatic death sentence it once was," says the author, Dr. Vladimir Lange. "New treatments, new drugs, and earlier diagnosis make survival much more likely than it was just a few years ago." Lung cancer patients often struggle under the stigma that their disease was self-inflicted. Their physicians sometimes approach them with less optimism, citing the poor overall survival rates. Simply put, as a group, lung cancer patients are under-informed, and under-encouraged. "The doctor told me I had eight months to live," remembers Ed, a lung cancer survivor. "That was eleven years ago." Covering the entire experience from diagnosis to recovery, Be a Survivor - Lung Cancer Treatment Guide features clear explanations, outstanding graphics, and candid testimonials by those who "have been there before." But what makes the book truly unique is the positive, upbeat, encouraging tone that seeks to motivate and empower both the patients, and their families. "It's certainly one of the best lung cancer patient guides I've seen in my 13 years of working with lung cancer patients," says Win Boerckel, the Lung Cancer Program Coordinator at CancerCare. In the tradition of other widely acclaimed "Be a Survivor" books on breast and colorectal cancers, the new Lung Cancer Treatment Guide will fill the void that exists in educational materials on this common and challenging disease. Vladimir Lange, M.D., a graduate of Harvard Medical School, is the creator and author of hundreds of DVD's and books that are used to educate millions of patients and physicians worldwide. His programs have been translated into a dozen languages, and are on the "recommended" lists of major patient advocacy groups. . . . . . . . . (Send 2 Press Newswire, Edited by Debra Tone, February 25, 2010) Disclaimer: The information contained in these articles may or may not be in agreement with my own opinions. They are not being posted with the intention of being medical advice of any kind.

http://www.cancernetwork.com/display/ar ... 7?verify=0 Article: CORONADO, Calif.—A second round of gefitinib (Iressa) slowed disease advancement in non-small-cell lung cancer patients who failed to respond to first-line treatment, according to a study presented at the 2010 Joint Conference on Molecular Origins in Lung Cancer. The lack of an established therapeutic option for NSCLC patients who have progressive disease after anti-EGFR-TKI failure poses a major challenge to physicians, said lead investigator In-Jae Oh, MD, PhD, an assistant professor at Chonnam National University and Hwasun Hospital in Gwangju, Korea. Dr. Oh and colleagues hypothesized that reintroducing gefitinib therapy might bring about significant clinical and radiological improvements, or disease stabilization, in a certain percentage of NSCLC patients with progressive disease. Their study population consisted of seven patients who had partial remission and 11 patients who had stable disease as their initial response to gefitinib. Before re-treatment with gefitinib (250 mg/d), the patients had to demonstrate progressive disease with at least one cytotoxic treatment following initial gefitinib failure. The investigators evaluated 15 patients after re-treatment with gefitinib. Among the six patients who showed partial remission with initial gefitinib treatment, two showed an additional partial remission when re-treated with gefitinib, and three patients continued to show stable disease for a disease control rate of 83.3%. Among the nine patients who showed stable disease with initial gefitinib treatment, two patients showed partial remission and three patients showed stable disease with re-treatment, for a disease control rate of 55.6% (abstract B24). "After failure with gefitinib and subsequent chemotherapy, we can try gefitinib again especially for the patients who had previously responded to gefitinib," Dr. Oh said. "This strategy will keep some patients from the toxicities of chemotherapy and help maintain the quality of life for several months." The conference was sponsored by the AACR and the International Association for the Study of Lung Cancer. Vantage Point Gefitinib serves as option after standard therapy The main reason for disease progression after an extended response to gefitinib is the development of secondary mutations, said Dr. Bunn, professor of medicine and James Dudley Chair in Cancer Research at the University of Colorado in Denver. "When that resistance mutation occurs, it's generally in a minority of the tumor cells," he said. "The majority still have the original activating mutation. So even in the absence of progression, there are many cells that will remain sensitive." This study has clinical implications, Dr. Bunn said. He pointed out that, in general, the same chemotherapy is not repeated if the patient has disease progression. "This study is suggesting that even if you have progression, some sensitive cells remain, and it may be worth going back on [gefitinib] after your next treatment is given." Standard chemotherapy is usually not given simultaneously with gefitinib or erlotinib (Tarceva) because of negative interactions, Dr. Bunn said. "But when you finish with the standard chemotherapy, you can put patients back on erlotinib or gefitinib. That is currently my standard of practice." . . . . . . . . . (Oncology News International, Vol. 19, No. 2, cancernetwork.com, Article by Fran Lowry, February 22, 2010) Disclaimer: The information contained in these articles may or may not be in agreement with my own opinions. They are not being posted with the intention of being medical advice of any kind.

I know. It's not one of my favorites ..... but, yeah, Hooray for her. At least, she is giving information to those who watch the show. It's a vehicle that will help put lung cancer into the public awareness. Barbara

http://www.nypost.com/p/entertainment/t ... AqLZ6iw8vJ . . . . . . . . . ARTICLE: Cancer strikes 'Housewives' By ROBERT RORKE Last Updated: 3:58 PM, February 17, 2010 Posted: 1:54 AM, February 17, 2010 'Desperate House wives" is creating a cancer storyline for one of its longtime Wisteria Lane residents. Kathryn Joosten, who plays busybody Karen McCluskey, will undergo treatment for lung cancer; the actress, 70, underwent treatment herself last year for the disease and made a complete recovery. As in Joosten's case, the story will have a happy ending. Filming was under way today in LA for the first episode in the story arc, in which McCluskey announces that doctors have found a spot on one of her lungs. At the end of the episode, her boyfriend, Roy Bender, played by veteran New York theater actor Orson Bean, proposes. The two senior lovebirds pile into a car with Susan Mayer and Mike Delfino (Teri Hatcher and Jamie Denton) and drive off to get married. Joosten, who has been with the show since 2005 and learned she was cancer-free this January, will work with staff writers to make sure the storyline dispenses correct information about the disease. . . . . . . . . . (The New York Post, Entertainment, "Cancer Strikes 'Housewives,' by Robert Rorke) Disclaimer: The information contained in these articles may or may not be in agreement with my own opinions. They are not being posted with the intention of being medical advice of any kind.

Katie, It is with understanding that I respond to your input. I know, only too well, what this must have been for you, with your Dad, and those with you who may have understood. This journey is all too painful. Each day I rise to the same, and wish that it were different, but it isn't. Your knowing that our niece's arrival will be of help is "right on." She will be my companion in this "end-of-life journey." When she was a little toddler, Bill and I used to wheel her in her carriage. Her Mom loved her brother, Bill, (my Bill) and she treated me. as his girlfriend, very warmly. When Cissy gets here, I will be so grateful. I need someone on the "other" side of the bed to pull the chux and bring Bill up to where he should be in the bed. Katie, I love the fact that you created this site. It is a support, lifesaver, and a great comfort for all who find us here. May all who come here find solace, and be of the feeling that we are "family." We are family and I hope everyone knows that we accept everyone, regardless of diagnoses. Lung cancer is a devastating disease, but we can beat this. Love you, Barbara

Michelle, my dear, (Big hug here from me to you) Your story, as well, has been a must for me to read. I have/had followed it with a devoted interest. Your journey, although a bit different, was nonetheless, the very same heart-wrenching story we both have known so well. Yes, hospice is fine, but in Bill's case, which is a place apart, there is a need for even more help. They have not provided all the things to eliminate the skin wounds which can develop into serious stages. Bill's heart is very, very strong. His journey has been mostly a fairly doable thing in that he is still viable and cooperates fully. Even now, at this stage, he is there, talking with the children who drop by daily and weekly. My thoughts of being so grateful to have our niece join us has resulted in a sense of relief. Bill, with his stamina, and his zest for "being here" could last quite some time, so yes, I need the help. I locked myself out of my inner house today. Putting the garbage out (some of the waste to eliminate from the home from medical refuse) I locked myself out from our kitchen. Our entrance leads to the kitchen or the basement. I found myself in the basement, but not able to access the kitchen on the main floor of the house. Thankfully, we had a phone down there in the basement. Our son, John came over, helped me access our inner kitchen, and repaired what was damaged. Our lives are becoming less than boring, but a lot of it goes by without Bill being aware. This tells us that we are and have been losing that special input he would have love to have given. Barbara

Thank you, Susan, We can feel the prayers. Truly, they have all been felt during this journey. That is a fact. Why else would Bill have had such an ability to ease through the treatments over the years, and to survive now, but still with comfort. He eats three times a day, and his appetite is quite healthy. I received a phone call from a niece, who has volunteered to come and stay to help with things. It has been a Godsend. She will arrive next week, and we will be a team effort in this. Bill also received the Anointing of the Sick (Last Rites/Extreme Unction) last evening from our son, Fr. Bill. Bill has received it prior - when he had WBR. Nowadays, it is thought of as a help rather than something given with death in mind. Yes, I would definitely say that prayer has been an integral part of all of this. So, thank you for yours, and we are very grateful for them. Barbara

What a beautiful person she must have been. Thank you, Randy, for posting the obit. I never cease to feel the pain of all the selfless people who die from lung cancer. It breaks my heart. Barbara

Bruce, thank you for the update on Marisa. She remains in my prayers. Barbara

Barbara, No, you are not wimping out. You are pondering whether or not to do something. Bill was on Alimta for a very long time, and had minimal side effects from it - some fatigue for a few days, but bounced right back. That was one of the better chemos he took. You, as others have noted, can stop it if you don't like it. You are in the driver's seat, dear Barbara. You may just be having seocnd thoughts because it does become a drag thinking about chemo again but, chemo has given Bill five productive years. We think it's not always a negative. Sometimes, it gives a boost to the survivor. I know that I am grateful for Bill taking the chemotherapies over the last years. Of course, the last one did knock the pins from under him, but hey, it was definitely worth the ride. Barbara

Thank you, Carol, Stephanie, Judy and Linda, Your words give a great deal of comfort and it is very close to your stopping by and saying hello. I may have told you that they delivered the Hoya lift for us to use in moving Bill from bed to chair (the chair was changed to a high-back with abilities to have him recline and have his feet up (if desired). Monday (tomorrow) they will send a healthcare worker, of whom we will have benefit for two hours a day, Mon.-Fri., which will help a lot. Today, Sunday, they will be sending a representative to check in to see how we are doing. So far, so good with the management of everything. I shop through an online grocery. The really big ones have this service. They gave me free delivery for two months as an incentive. It has worked out beautifully. As for the bathing, I think it's now down to a science. It's a struggle, of course, due to not being able to move him easily. The technique I have used is one that has him cooperating with the moves. That helps greatly. Feeling fresh every day is a good feeling for him. The product I found is a bath without rinse, and contains soothing ingredients. We also use a balm (the farmer's use on the cows). It worked wonders on a butt sore that he acquired at the hospital. The two foot sores are now down to one, and that one is disappearing. At first, I admit that I was anxious about how to change the sheet because of his very painful right shoulder when moved. The answer was to go from bottom to top with the sheet. It worked nicely. He helps with bridging the butt, and with bending a bit at the waist when the sheet reaches that end. It took a couple of tries to get it right. This may seem as though we are publishing incidentals, but when anyone is caring for someone and would like a nice clean sheet every day, it's crucial to Q of L - even the caregiver's. All's well and I feel comfortable with the arrangement. Bill is still eating and taking fluids, but is sleeping most of the day and all of the night. He is not in any pain. They assured me that pain (if it becomes an issue) will be addressed through appropriate meds. Thankfully, Bill is in no pain (except the right shoulder is moved). He is on a 25 mcg Fentanyl patch, and Spiriva for breathing. He looks a bit gaunt, but he is doing OK. He told me he wanted to make 80. I told him, "You are almost four months into it." He smiled. I told him it isn't the amount of time, it's what you do with it. I think he has done just fine. Barbara

http://www.medicalnewstoday.com/articles/178407.php ARTICLE: . . . . . . . . Accuray Incorporated (Nasdaq: ARAY), a global leader in the field of radiosurgery, announced that more than 12,000 courses of lung cancer treatment have been completed with CyberKnife radiosurgery. Usage of CyberKnife radiosurgery for lung cancer continues to grow, as illustrated by a 25 percent increase year over year in calendar year 2009. CyberKnife radiosurgery offers lung cancer patients a non-invasive means for treating their disease. The outpatient treatment is completed in five or fewer visits, and is both painless and non-surgical. Because the CyberKnife System utilizes continual image guidance along with continual correction for respiratory motion, it is able to deliver high-doses of radiation to the tumor from hundreds of angles with pinpoint precision. Judith, a lung cancer survivor, shares her experience having been treated with both conventional lung cancer treatments and CyberKnife radiosurgery: Judith was diagnosed with stage IIIa lung cancer in the winter of 2004. At that time she received 12 rounds chemotherapy, 23 days of radiation therapy and surgery two weeks later to remove the upper lobe of her right lung. Recovery from her treatment was difficult, involving a 15 day hospital stay and four weeks of recovery at home. During a follow-up visit, some residual cancer was discovered leading her to undergo eight more rounds of chemotherapy. Judith hoped the worst of things were behind her and for almost three years they were. Then in the summer of 2007 doctors found a recurrence of her cancer in a lymph node located deep in the center of Judith's chest. Since she had already undergone surgery and had received conventional radiation years prior and given the location of the cancer close to sensitive, vital structures in her chest, her thoracic surgeon suggested CyberKnife radiosurgery. Because of its extreme precision, the CyberKnife System is able to focus the radiation delivery on the tumor and avoid surrounding healthy tissue, meaning Judith was a candidate despite having previous radiation. Judith's CyberKnife treatment was completed in four outpatient sessions. She was able to resume her daily activities after each treatment and got back to work right away. Nearly three years later Judith is doing well and has had no recurrences. "The first time round, it was an eight month period of my life spent at the cancer center, so the second time, when I had the option to do four treatments over two weeks and be done, it was a no brainer," said Judith. "With the CyberKnife there was no downtime and I didn't experience any side effects. During the treatments I just lay comfortably on the treatment table and was able to watch the animal channel on a TV in the ceiling. It was a piece of cake compared to what I had been through already." About the CyberKnife® Robotic Radiosurgery System The CyberKnife Robotic Radiosurgery System is the world's only robotic radiosurgery system designed to treat tumors anywhere in the body non-invasively. Using continual image guidance technology and computer controlled robotic mobility, the CyberKnife System automatically tracks, detects and corrects for tumor and patient movement in real-time throughout the treatment. This enables the CyberKnife System to deliver high-dose radiation with pinpoint precision, which minimizes damage to surrounding healthy tissue and eliminates the need for invasive head or body stabilization frames. About Accuray Accuray Incorporated (Nasdaq: ARAY), based in Sunnyvale, Calif., is a global leader in the field of radiosurgery dedicated to providing an improved quality of life and a non-surgical treatment option for those diagnosed with cancer. Accuray develops and markets the CyberKnife Robotic Radiosurgery System, which extends the benefits of radiosurgery to include extracranial tumors, including those in the spine, lung, prostate, liver and pancreas. To date, the CyberKnife System has been used to deliver more than 80,000 treatments worldwide and currently 190 systems have been installed in leading hospitals in the Americas, Europe and Asia. . . . . . . . . . (Medical News Today, February 6, 1020, Catefory: LUNG CANCER, also found in MRI/PET/Ultrasound; Radiology/Nuclear Medicine, May Contain Forward-looking Statements.) Disclaimer: The information contained in these articles may or may not be in agreement with my own opinions. They are not being posted with the intention of being medical advice of any kind.

Jamie, You are an inspiration (I know the word can be over-used). In our experience over these many years, you have stood out as a fantastic survivor. I tell people, whenever the opportunity arises, that I know this woman .... who .... . You are that woman. God bless you, your treatments, results and everything else belonging to you and yours. Love you , Barbara (and Bill)

Reynsie, Diane, and Kasey, You are all thought of and in my thankful prayers. Thankful meaning that your posts and support are crucial in this walk of Bill and mine. Bill has been really in and out of things. Tonight, he was perfectly lucid, and after a lovely little supper of scrambled eggs, with peanut butter on toast, plus a strawberry shake, he sat watching NCIS with Mark Harmon. It's his favorite. Taking "one day at a time" doesn't mean any negativity. It means that there are changes from day to day, and meeting the needs of each day is something inherent in the process. I love you all. Please know that. It is not an empty statement. I have come to regard you all as family. Family (as you probably know) has less to do with blood ties. It goes much, much further. Barbara

Congratulations to you, Patti. As others have said, "You are definitely an inspriation." Toasting to the next 3000 posts. Barbara

Thank you so very much for taking the time to give the uplifting message. Congratulations on the 6-year survivorship. I think that is wonderful. Barbara