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Barb73

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Posts posted by Barb73

  1. Yes, Greg, the subject is close to my heart, as well.

    Much of what occurs with WBR happens at the long end of things. I guess when they tell people about the side effects they don't think in terms of long-term survivors.

    Bill had some rather difficult times with finding words, formulating ideas, and some others that occurred after the two-year mark.

    Still, he was Bill, and I was very grateful to have most of his original self at the end. His dry humor was there to the last.

    Here's to hope in finding solutions.

    Barbara

  2. Greg,

    This is very interesting and hopeful.

    An answer to prevention of radiation necrosis in brain tissue would be wonderful, and truly a godsend.

    Let's hope they are on the right track with Avastin. I remember Bill having that particular regimen (Avastin), and wondering at the time if it would enter the brain through the blood/brain barrier.

    Of course, I wasn't apprised of this aspect.

    Barbara

  3. Carol,

    I am so very glad to see this. You have been blessed. Please enjoy every single minute of the NED.

    You will, I am sure. :D:D:D I certainly know that I did when I read it.

    Know that I think of you often and when I do, I say a prayer for your continued success.

    God bless.

    Barbara

  4. I cannot express the gratitude for the wonderful offerings received.

    People have sent food, and sustenance to us. But, even more, the wonderful offerings here on this board of spiritual support.

    God bless each and every one of you.

    Barbara

  5. Link to obituary:

    http://www.legacy.com/obituaries/northj ... =141242858

    Your posts to me have been a great comfort, even though I am sitting here crying as a result. They are tears of gentle release and much needed.

    Bill had an amazing journey as we recalled many times during the regimens.

    Except for the shoulder, Bill never had any pain, nausea, and save a bit of fatigue following some chemotherapies, he was viable. We lived a nearly normal life, and up until the winter of 2009, he was able to shovel snow and rake leaves. Those were indicators to us that he could feel "viable."

    The amount of pain meds on hospice was so scant that when they came and I told them to destroy the pain kits, they were amazed at the amount that was not used. I tell this to let everyone know that Bill was not in any pain throughout his trek with lung cancer.

    I think during the last week or so, he received maybe three of four percocets on various occasions, and only once on those days.

    The nurses, the healthcare worker and I were taken with the fact that Bill was singing during the last weeks. Someone would say something, and Bill would find a song that had something to do with what was said - a word, a phrase, and it fit perfectly. We had many laughs, and good feelings over that.

    Thank you for every single word here for me to hold dear. I do.

    Today, I am taking our children, grandchildren, along with my sister, and her husband, Bill, to dinner where Bill and I dined over the many years.

    Tomorrow, there will be a viewing in the afternoon and evening at The Petrik Funeral Home (across the street from us and down one block).

    Our son will be saying the Mass at Our Lady Queen of Peace, on Staten Island, at 11:00 am on Tuesday morning.

    The burial will be in the New Jersey Military Cemetary, at 2:00 pm, Tuesday afternoon.

    I love you all with all that is in my heart. You have made our journey smoother, and always filled with caring and support.

    Barbara

  6. My husband, Bill, died this afternoon, March 25, at 2:15 pm.

    He passed very peacefully, and had no pain over his hospice stay, except for his shoulder when moved.

    Our diningroom became his greeting room for all to come and visit him.

    He never complained of anything during his courageous fight. He took it as a job to be done, and gained five plus years in the process.

    My heart is broken, but I am grateful for the years we have had together. We were married for 54 1/2 years.

    Months ago, he told me that he had no regrets. I took that as a compliment to our lives together.

    He told the healthcare worker, "I love my Barbara."

    Rest in peace, dear Bill.

    Your loving wife, Barbara

  7. Maryanne,

    I am so sorry for your loss of your friend due to lung cancer.

    The delayed diagnosis scenario is no stranger to us. Bill was diagnosed late due to two digital Xrays through which he was deemed, "OK."

    As we all know, Bill was not OK. He went almost a year without proper treatment.

    I share in your anger at the lack of a CT scan in time.

    Barbara

  8. Bonnie, please accept my condolences. My heart reaches out to you.

    I wish that I could be there to meet you and tell you in person.

    A ((HUG)) is the best I can do.

    Barbara

  9. 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

  10. 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

  11. 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

  12. 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

  13. 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

  14. 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.

  15. 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.

  16. 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.

  17. 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.

  18. 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.

  19. 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

  20. 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

  21. 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

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