MedWorm provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest medical blog items that have been tagged with 'compassionate'. Sat, 03 Sep 2011 02:08:08 +0100 http://www.medworm.com/index.php?rid=4997614&cid=t_339979_109_f&fid=34750&url=http%3A%2F%2Fpsychcentral.com%2Fblog%2Farchives%2F2011%2F07%2F04%2Fliving-the-compassionate-life%2F In November 2007, religious historian Karen Armstrong won the TED (Technology, Entertainment, Design) award because of her many contributions that have made a profound difference in the world. Each recipient is given $100,000 and a wish for a better world. So, three months later, when Armstrong accepted the award, she asked TED to help her create, launch, and propagate a Charter for Compassion that would be designed by prominent thinkers, philosophers, and leaders from a variety of different faiths. Its mission? To restore compassion to the heart of religious and moral life at a time of such flagrant violence and terrorism in the name of race and religion. As I read through excerpts of Armstrong’s book, Twelve Steps to a Compassionate Life, and reviewed her interview earlier this year wi... World of Psychology blogs http://www.medworm.com/rss/comments.php?id=4997614 Mon, 04 Jul 2011 15:18:22 +0100 4997614 http://www.medworm.com/index.php?rid=4876421&cid=t_339979_109_f&fid=34750&url=http%3A%2F%2Fpsychcentral.com%2Fblog%2Farchives%2F2011%2F05%2F28%2Fhelping-others-is-good-for-your-health-an-interview-with-stephen-g-post-phd%2F Mahatma Gandhi once said that “The best way to find yourself is to lose yourself in the service of others.” I have benefited from that advice, for sure, especially in the months that I was crawling out of a very severe depression. An expert on the perks that come with helping others is bestselling author Stephen G. Post, author of The Hidden Gifts of Helping: How the Power of Giving, Compassion, and Hope Can Get us Through Hard Times (Jossey-Bass, 2011). He is Professor of Preventive Medicine, Heard of the Division of Medicine in Society, and Director of the Center for Medical Humanities, Compassionate Care and Bioethics at Stony Brook University. Visit him on his website at www.stephengpost.com/hiddengifts. I have the privilege of conducting an exclusive interview with him for... World of Psychology blogs http://www.medworm.com/rss/comments.php?id=4876421 Sat, 28 May 2011 10:07:20 +0100 4876421 http://www.medworm.com/index.php?rid=4670169&cid=t_339979_109_f&fid=34750&url=http%3A%2F%2Fpsychcentral.com%2Fblog%2Farchives%2F2011%2F04%2F03%2Fhas-psychiatry-really-abandoned-psychotherapy-the-story-behind-the-new-york-times-story%2F A fifteen-minute med check, a ‘scrip for some Prozac, and you’re outta here, buddy! You got other problems? Talk to your therapist! If the front-page article in the March 6 New York Times1 can be believed — and who wouldn’t believe America’s “Paper of Record”? — this is essentially what the practice of American psychiatry has become. But how accurate was the Times’ portrait of outpatient psychiatry? How grounded was it in the best available research? And given the roughly 30,000 psychiatrists in the U.S., how clear a picture can we get by peering through the eyes of one beleaguered practitioner who believes that psychotherapy is no longer “economically viable”? As an occasional contributor to the Times who has great respect for its journalistic integrity, I’m sorr... World of Psychology blogs http://www.medworm.com/rss/comments.php?id=4670169 Sun, 03 Apr 2011 10:30:58 +0100 4670169 http://www.medworm.com/index.php?rid=4477816&cid=t_339979_109_f&fid=34750&url=http%3A%2F%2Fpsychcentral.com%2Fblog%2Farchives%2F2011%2F02%2F14%2Fmaking-lemonade-from-lemons-on-valentines-day-a-romantic-tale%2F In order to move beyond their dark days, most people with depression master the lesson on how to make lemonade from lemons. For Valentine’s Day, here’s a romantic tale on just that: how a friend of mine turned an embarrassing situation into the best thing that ever happened to her… Back when I began my writing career drafting instructions on how to bury St. Joseph (he’s known to make real estate sell) as part of the “St. Joseph’s Home Sales Kit” for Roman, Inc., a religious giftware company in the suburbs of Chicago, I befriended a woman who worked in the IT department. Aneta, a spritely Polish babe, handled the technological emergencies of computer-challenged folks such as myself who might, say, send an off-color joke to the entire company by acci... World of Psychology blogs http://www.medworm.com/rss/comments.php?id=4477816 Mon, 14 Feb 2011 17:42:46 +0100 4477816 http://www.medworm.com/index.php?rid=4394528&cid=t_339979_109_f&fid=34750&url=http%3A%2F%2Fpsychcentral.com%2Fblog%2Farchives%2F2011%2F01%2F25%2Fbest-of-our-blogs-january-25-2011%2F Almost a decade ago, I had a conversation with a friend that made me both infuriated and grateful. I don’t know how it started, but somehow we got to talking about depression. Essentially, he told me that depression was a made up disorder that helped put money in the pockets of mental health professionals. He didn’t see the need for medication and thought people should just buck up and be happy instead of feeling sad. Having a grandfather who suffered from depression, I was certain that depression was not only real, but a serious illness. And I was not only disturbed by his reaction, but angry. Although it’s been 10 years since the conversation, I often think about it. I’m not as upset as I was before. Although I still don’t agree with his statement, I ... World of Psychology blogs http://www.medworm.com/rss/comments.php?id=4394528 Tue, 25 Jan 2011 13:43:59 +0100 4394528 http://www.medworm.com/index.php?rid=3994237&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F09%2Ffor-those-of-you-who-are-wondering-the-clinical-trial-is-looking-good.html Just a short note. I will try to write more tomorrow if I can find a WiFi spot at the airport. Monica and I are flying home tomorrow. So--I have a bunch of tests and scans that I have to pass, and if I do, then I'm in the trial and can get my first dose next week. The treatment appt. is already scheduled, actually. I will be flying down next week for the whole week. Longer, more detailed post tomorrow, I promise.      Jeanne   @ Jeanne Sather 2010. (Source: The Assertive Cancer Patient) The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3994237 Thu, 23 Sep 2010 07:54:11 +0100 3994237 http://www.medworm.com/index.php?rid=3987199&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F09%2Fim-home.html How many exclamation points are too many?  When I was in J School, we were taught to use exclamation points sparingly, and NEVER more than one per sentence. However, this homecoming, after six days at Northwest Hospital really deserves as many !!!!s as I can squeeze in. The best thing about being "sprung" was being outside in the fresh air, and it didn't hurt that the sun was shining. I had not breathed fresh air in six days. None of the windows I saw at the hospital--and certainly not the ones in my room--could be opened. The two best things about being on the oncology floor at NW Hospital, were (No. 1) the fantastic nurses and nursing assistants. Everyone who took care of me during my time there was warm and caring and competent, with the exception of one nursin... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3987199 Tue, 21 Sep 2010 03:10:32 +0100 3987199 http://www.medworm.com/index.php?rid=3958031&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F09%2Ft-dm1-going-to-la.html I have an appointment in Highland, California (an L.A. suburb), on September 22 for a consult with the doctor who is heading up the T-DM1 clinical trial there. I've already jumped through a lot of hoops to qualify for this trial, so once I have the consult and sign all the consent documents, then we'll schedule me for another visit to get a bunch of tests and scans, and then after that I will start getting the drug, once every three weeks, by IV.I had been hoping to enroll in a branch of the trial at the University of Washington, which is right down the street from my house, but that trial has been delayed, delayed, delayed. I can't wait any longer--I have tumors growing all over my body, and we need to get them under control. So it looks like I will be The Co... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3958031 Fri, 10 Sep 2010 18:37:47 +0100 3958031 http://www.medworm.com/index.php?rid=3929426&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F09%2Fi-need-some-time-off.html Yesterday I had the final-final cyberknife treatment, to kill the tumor in my sixth rib on the right side.    Over the past several months I have had huge doses of radiation--four separate series of treatments--and I'm beginning to understand the term "radiation sickness," usually applied to the hibakusha who survived the bombings of Hiroshima and Nagasaki.  Not to get too dramatic about the whole thing, but my body has taken a major beating, and now I need to heal. Part of that will be simply doing less, every day, until my energy rebounds. As a result, I won't be online much for the next week or so, and I will be skimming through my e-mail, but not answering most of it. Sorry.  I spent several hours working in my garden this morning, with the fai... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3929426 Thu, 02 Sep 2010 22:15:10 +0100 3929426 http://www.medworm.com/index.php?rid=3915242&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F08%2Fmore-in-t-dm1.html Well, as a woman with advanced breast cancer who HAS RUN OUT OF TREATMENT OPTIONS, I have to disagree with Breast Cancer Action on this one. See the letter re: T-DM1: T-DM1 Breast Cancer Action Letter I understand the arguments the group advances, I even agree with them up to a point. But the whole approval process is incredibly long and cumbersome, and getting drugs outside that process--despite what you might think when you hear the term "compassionate use"--is almost impossible, in my experience. As I said in an earlier post, I don't think this will hurt my ability to get the drug in a Phase II trial. There is a trial opening here in Seattle soon, unless this news somehow makes the folks at the UW less enthusiastic about getting the trial through their ow... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3915242 Mon, 30 Aug 2010 17:28:48 +0100 3915242 http://www.medworm.com/index.php?rid=3913263&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F08%2Ft-dm1-news-.html I'm not sure what this news item about T-DM1 means for me, if anything. T-DM1 is the new drug that I plan to get in a clinical trial once I've finished my current cyberknife treatments. I think it's the right drug for me--pretty much the only drug, really--and there is a trial opening at the UW/SCCA soon (although THAT is held up in a committee, I'm told). In any case, the drug maker failed to win "accelerated approval" for T-DM1, "because all available treatment choices for metastatic breast cancer ... had not been exhausted."Well, here is one woman for whom all options HAVE been exhausted. But I'm not going to panic, because I don't think this news affects the clinical trial, but it might affect how soon the drug is available outsid... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3913263 Sat, 28 Aug 2010 21:29:57 +0100 3913263 http://www.medworm.com/index.php?rid=3896055&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F08%2Fback-to-the-cyberknife.html Today is the first of five treatments in my third series of cyberknife procedures.  OK, let's stop and think about that for a minute ... In January, I had a series of five treatments to my skull. There was a tumor there that was pressing on a nerve that controlled my tongue. It was the first tumor I've had north of my collar bone, ever, and so it got my--and my doctors'--special attention.  Important to note, however, that this was NOT a brain tumor. Just another "bony lesion," as they say in my reports.  Then, in early August, I had a series of three cyberknife treatments to zap a tumor in my spine that was moving in on the spinal cord. See: Very Quick Update That series was, I am happy to report, uneventful. No problems, no side effects... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3896055 Mon, 23 Aug 2010 18:23:30 +0100 3896055 http://www.medworm.com/index.php?rid=3876715&cid=t_339979_109_f&fid=34750&url=http%3A%2F%2Fpsychcentral.com%2Fblog%2Farchives%2F2010%2F08%2F17%2Fwhere-do-friends-go-when-youre-coping-with-a-crisis%2F Have you ever noticed that when something bad happens to you or to someone close to you in your life (like a son or daughter, or a parent), some friends might offer help, while others disappear? This seemingly becomes more the case as we get older. I was reading this interesting essay in The New York Times today and stumbled upon an explanation for this behavior — the guy quoted in the article called it “stiff arming” or “pseudo-care.” A friend offers help to you in your time of need, but then disappears. Why do people do this? Are they afraid bad luck is “catching”? The author of this essay describes how both her daughters suffered serious health problems in the same year — one from a rare disease, and the other from anorexia. Then she notic... World of Psychology blogs http://www.medworm.com/rss/comments.php?id=3876715 Tue, 17 Aug 2010 19:11:01 +0100 3876715 http://www.medworm.com/index.php?rid=3776567&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F07%2Fa-double-catch22.html What do you call it when you've been caught in TWO Catch-22s in one day?A Catch-44? A Catch-22/22? Or just a damned mess?I thought I was on a roll yesterday morning, making arrangements to fly to California for an appointment with the doctor, Dr. Ibrahim, who is heading up the T-DM1 clinical trial in Highland, California. I e-mailed the woman who will be making travel arrangements for my friend Monica and me. I e-mailed a hotel near the clinic to make reservations. And I e-mailed the study coordinator, Tricia Ramos, to ask her if she could make the appointments for the tests and scans I need to have done at the clinic where the trial is taking place. Tricia had already told me that the results of my tests and scans done at other facilities would not be acceptable, and I wou... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3776567 Wed, 21 Jul 2010 23:50:49 +0100 3776567 http://www.medworm.com/index.php?rid=3772416&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F07%2Fhitting-a-few-more-balls-in-the-air-.html I now have an appointment with Cyberknife Guy for Friday, and I will track down the discs with my scans before then. Other balls that I've tossed into the air this morning:I e-mailed Tricia in Highland (she's the study coordinator) to ask her to schedule all the tests and scans I need to have done at the clinic in Highland when I'm down there next week. (I can't book my return flight until I know how long I have to stay.)I e-mailed the woman who is arranging my flights, using frequent flier miles donated by a former student.Finally, I e-mailed the hotel near the clinic in California that offers a special discounted rate to patients coming to take part in clinical trials and asked them to book me a room for three nights. After that, I will be able to stay with Megan, a... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3772416 Tue, 20 Jul 2010 17:24:58 +0100 3772416 http://www.medworm.com/index.php?rid=3772417&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F07%2Fhow-crazy-can-one-cancer-patient-get-.html My good friend Collin just e-mailed me, and she suggested not thinking more than 48 hours in advance as I try to navigate my way through the swamp--complete with hungry alligators--that is my life right now. That's good advice, and I'm going to follow it. Here's the latest wrinkle in the saga. I have an appointment with the clinical trial doctors in Highland, California, for July 29. However, the daily radiation to my right femur will not be finished by that date. When I went in for treatment yesterday, I thought I was going to see Dr. Eulau for our weekly checkup, and I planned to ask him how he wanted to handle that--just shorten my treatment, or have me come in and finish it after I returned from California. That's when I found out that he was on vacati... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3772417 Tue, 20 Jul 2010 17:14:41 +0100 3772417 http://www.medworm.com/index.php?rid=3763029&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F07%2Fflying-to-california-.html First, thank you to everyone who sent me contact info. for various organizations that will fly cancer patients for free. I had no idea there were so many!Some of these were posted as comments to the post I wrote yesterday, others came to me in e-mail, and I will try to get up a new post listing all of them as soon as I can. In the meantime, a former student of mine from when I taught nonfiction writing at the UW Extension (the night program for adult students--LOVE those students) e-mailed me and offered to fly Monica and me to and from California using her frequent flier miles!What could I do but accept with thanks? Such a wonderful offer. So once I know how long I have to stay--my appointment with the doctor who is heading up the study is on July 29, but there are also a bunc... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3763029 Sat, 17 Jul 2010 17:56:34 +0100 3763029 http://www.medworm.com/index.php?rid=3761591&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F07%2Fthe-best-cure-.html No, I haven't discovered a cure for cancer, sorry. But I do know the best cure for the state I've been in for the past few days, ever since Dr. Lee told me in a phone call on Tuesday that my cancer is progressing pretty much everywhere. At least, this is the best cure for me: And it is to TAKE ACTION.As I wrote yesterday, Dr. Lee's staff refused to get me in to see him so that I could get answers to my questions about the four tumors in my spine that are moving toward (or possibly pressing on) my spinal cord (you know, where all the nerves are). I also needed more info about the tumor in my sacrum that is causing the numbness and tingling down my left leg, and I wanted to tell him that I wanted to move ahead with all possible speed on getting into the T-DM1 tr... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3761591 Fri, 16 Jul 2010 18:46:36 +0100 3761591 http://www.medworm.com/index.php?rid=3758062&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F07%2Fmy-doctor-fails-me.html I've been reeling for the past two days over my most recent bad news, not helped by the fact that Dr. Lee's staff refused to get me in to see him--AND I NEEDED HIM. I have a long list of questions about the scans that were done on Monday. So far, I only had a brief conversation with Dr. Lee on the phone to get the bad news, and we haven't reviewed the actual scans together, nor have we discussed what I want to do next. So I called to make an appt., and when the staff said he was fully booked, I asked them to squeeze me in because it was an emergency, and they refused. They reminded me that I have an appt. with Dr. Lee a week from today and told me to wait for that. Well, that's not acceptable when I have four tumors pressing on my spinal cord. (Not to ment... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3758062 Thu, 15 Jul 2010 17:45:44 +0100 3758062 http://www.medworm.com/index.php?rid=3750226&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F07%2Fbad-news.html Well, the news from my scans (PET/CT and MRI) yesterday wasn't good. In fact, it is bad. The falling CEA tumor marker that we were so happy about over the past couple of months was--obviously--not accurate, and my cancer has been progressing merrily, pretty much everywhere: I now have three tumors in my right lung, up from two, and they are larger; there are new tumors in my lymph nodes, and some of the ones that were there before are larger. In addition, tumors are moving out of the bone and toward the spinal cord in four places in my spine. The numbness in my left leg is caused by a tumor also, but I forget exactly where that one is.Dr. Lee called me with this news today, and then I talked to Dr. Eulau on the phone as well. We don't have a plan yet, ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3750226 Wed, 14 Jul 2010 01:31:32 +0100 3750226 http://www.medworm.com/index.php?rid=3607770&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F05%2Fthe-tdm1-road-trip-comes-to-seattle.html So, I've been on the phone with folks at Genentech the past couple of days. First with their clinical trials hotline, and then with a study coordinator in Highland, California, which is supposed to be the second site opening to give T-DM1 on expanded access. Now, Southern California is not as difficult a place for me to travel back and forth to as Florida, but I still had some reservations that I would be able to fly down there every three weeks for treatment and so on. I was pursuing it, however, and it looks like I made it through all the hoops (and there are a LOT of hoops), with the possible exception of my cancer progressing on my present regimen. I certainly thought it was progressing, but Dr. Lee apparently told the study coordinator, Tricia is her  name, that ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3607770 Thu, 27 May 2010 17:18:12 +0100 3607770 http://www.medworm.com/index.php?rid=3595838&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F05%2Fdialing-for-tdm1.html When I saw Dr. Lee last week, we talked some more about T-DM1, the new breast cancer drug now beginning to be available on an expanded access (or compassionate use) basis from Genentech.I told him that I couldn't go to Florida to get the drug, for all sorts of reasons, including the financial costs associated with flying there every three weeks, but also the costs in energy, emotional and physical. For where I'm at right now, the cross-country flight is a real barrier. We agreed to watch for a location on the West Coast--I was thinking if not Seattle, then San Francisco, because that is only a two-hour flight and I have friends in the Bay Area I can stay with. And I pledged myself to call the Genentech clinical trials hotline once a week for updates. So that is on my li... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3595838 Mon, 24 May 2010 16:29:41 +0100 3595838 http://www.medworm.com/index.php?rid=3566780&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F05%2Fthe-family-meeting.html Well, we had the long-awaited "family meeting" with Dr. Lee this morning at 7:45. That is really early for me, and I was afraid I wouldn't wake up with my alarm. As a result, I couldn't fall asleep last night and only got about three hours of sleep. (I'm going to try to make up for that with a nap here.)The "family" in attendance was Older Son, Younger Son, Laurie, and Monica. Plus Dr. Lee and me, of course. I'll write more about it later when I'm not so tired. I thought it went well, although I thought Dr. Lee spent too much time talking about pain control and the various drugs plus the various ways they could be administered. I don't think pain control was at the top of anyone's agenda for this meeting ... even his. So may... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3566780 Fri, 14 May 2010 18:05:05 +0100 3566780 http://www.medworm.com/index.php?rid=3522793&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F04%2Ftdm1-update.html Thank goodness for friends. Over the past few days, at least a half dozen friends pitched in to help me get more info on the new breast cancer wonder drug, T-DM1, which is supposed to be available soon on a compassionate use basis. I was hoping to find it in a phase II clinical trial, but that option is no longer out there.There is a phase III trial at Kaiser in California, but I don't qualify for that trial for several reasons, including my melanoma history, and I don't want to do a phase III trial anyway--because I could be randomized to the other arm of the trial and not get the T-DM1 at all. Dr. Livingston, my former medical oncologist and now the godfather of my cancer treatment, told me in an e-mail this morning that Dr. Lee (my present oncologist) should contact ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3522793 Fri, 30 Apr 2010 21:41:09 +0100 3522793 http://www.medworm.com/index.php?rid=3515577&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F04%2Fsome-good-news-for-a-change-.html I went in to see Dr. Lee today, and also to get treatment (we're calling it targeted therapies light: reduced doses of Herceptin, Avastin, and Tykerb--the only one that bothers me is the Tykerb), and of course I had my list of questions for Dr. Lee. But he had a surprise for me: My CEA (tumor marker) has dropped substantially in just a couple of months! That means less cancer in my body. Now, I had asked to have this test a few weeks back, but with everything else that was going on, I kinda forgot about it. It was great to get some good news for a change. Dr. Lee said he wasn't sure why my marker had dropped so far, but we agreed that the radiation I had in January had probably reduced the total volume of cancer, or my tumor load, so the marker dropped. And ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3515577 Thu, 29 Apr 2010 05:23:18 +0100 3515577 http://www.medworm.com/index.php?rid=3460151&cid=t_339979_87_f&fid=36438&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FCato-at-liberty%2F%7E3%2Fp-ta1-uWmjQ%2F This article by Veronique de Rugy is probably a good place to begin since it compares all Presidents and shows that Bush was a big spender compared to Reagan…and to Clinton. Chris Edwards has similar data, capturing all eight years of Bush’s tenure. But the most damning evidence comes from the OMB’s Historical Tables, which show that Reagan reduced both entitlements and domestic discretionary spending as a share of GDP during his two terms.  Bush (and I hope nobody is surprised) increased the burden of spending in both of these categories.That’s the spending side of the ledger. Let’s now turn to tax policy, where Thiessen writes: Bush enacted the largest tax cuts in history — and unlike my personal hero, Ronald Reagan, he never signed a major tax increa... Cato-at-liberty blogs http://www.medworm.com/rss/comments.php?id=3460151 Mon, 12 Apr 2010 12:39:32 +0100 3460151 http://www.medworm.com/index.php?rid=3374152&cid=t_339979_97_f&fid=35606&url=http%3A%2F%2Fwww.theangriestpharmacist.com%2F2010%2F03%2F17%2Fworking-a-thankless-job%2F Random thought: Pharmacists often say that it’s those special patients, the ones that praise us and bring us treats/goodies to show their appreciation, that make it all worthwhile. Those that send us notes and Christmas Cards. Those that share pictures of their family and stories of both pain and prosperity. They drown out the shouts of the patients that see you as a servant and talk at you like a slave. Those special patients help you make it through a tough day because you know you’ve made an impact on their life, and you might’ve even saved their life. I guess I see the glass as half empty. I think that the yells of the asshole make it harder to appreciate the thanks of a patient that recognizes your caring, compassion, and service. The adage says, “It’s be... The Angriest Pharmacist blogs http://www.medworm.com/rss/comments.php?id=3374152 Wed, 17 Mar 2010 11:45:16 +0100 3374152 http://www.medworm.com/index.php?rid=3172161&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2010%2F01%2Fback-home-on-the-couch.html Just a quick post, because I'm tired, I'm in pain, and I had a long and complicated day of medical appointments. The good news is my cyberknife treatments finished today, and I have the four-color certificate to prove it! I could have done without that bit of levity, but maybe other patients feel differently. I also got a hug and a nice goodbye (with a handful of chocolates) from one of my technicians, and that was appreciated. He took good care of me, and made things easy for me, and I will never stop noticing the many people around me who behave like this.He did ask me if I was planning to celebrate tonight, and that hadn't even crossed my mind. When you have metastatic disease, the treatment never really stops, and in fact I have three weeks more of radiation sta... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3172161 Thu, 14 Jan 2010 00:00:04 +0100 3172161 http://www.medworm.com/index.php?rid=3115251&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F12%2Fresearching-neratinib.html I have an appointment with Dr. Lee this afternoon to discuss neratinib further. He is just back from the breast oncology meeting in San Antonio, and he should have information to share about neratinib from that meeting. I've spent the morning reading through some of the info that readers had forwarded to me, and I got some useful information from the breastcancer.org neratinib discussion board. All of these women are getting neratinib in a clinical trial, and some are getting a placebo--that would be a drag. Here's that link: Neratinib Clinical Trials Several women taking neratinib have had serious problems with diarrhea, which is the Number One issue with the drug. Some 85 percent of women who take it get diarrhea. Some of them were able to bring this under contr... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3115251 Tue, 22 Dec 2009 19:10:34 +0100 3115251 http://www.medworm.com/index.php?rid=3061526&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F12%2Fneratinib-more-hoops-to-jump-through.html I spent two days this week writing up my entire cancer treatment history--all 11 years of it, complete with notes on my response to each treatment I've had--and then I delivered this 1,300-word document to Dr. Lee, my medical oncologist, so he could use it to write the application for me to get neratinib from Wyeth/Pfizer on compassionate use. Then, I received a phone message from Dr. Lee saying that the information we had provided wasn't enough--the folks at Wyeth/Pfizer needed more details and copies of my original pathology report (the analysis of my original tumor that was done after my mastectomy back in October 1998), and the exact date of my mastectomy, and more. Now, I'm not stupid, and I had what I thought was a complete copy of my medical records from the ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3061526 Sat, 05 Dec 2009 18:15:14 +0100 3061526 http://www.medworm.com/index.php?rid=3052344&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F12%2Fa-brighter-day.html I woke up this morning feeling lighter. Now, this is a good feeling, so I'm not going to analyze it to death, but I was kind of surprised. I didn't think I was particularly stressed, although the past two days, which I spent writing out my entire cancer treatment history, were, in hindsight, rather tiring. OK, a lot tiring. It also helps that the sun was shining when I woke up, and it's still shining two hours later. It looks like it's going to be one of those perfect late-fall days: cool and bright. Suddenly, I have the energy to do chores that I've been avoiding: laundry, cleaning the kitchen, cooking a pot of vegetable soup, and changing the sheets on my bed--always a luxury, clean sheets. I also have a couple of jewelry orders to fill, ... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3052344 Wed, 02 Dec 2009 19:07:31 +0100 3052344 http://www.medworm.com/index.php?rid=3044977&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F11%2Fhoo-boy-reliving-the-past-11-years.html After procrastinating for something like two weeks, I finally sat down today to write my draft of the application to get neratinib on compassionate use grounds. The application is supposed to come from my oncologist, of course, but he doesn't have time to write it, so I said I'd write the first draft and give it to him to edit. And I'm sure he's going to put a lot of my everyday language into medicalese, which is fine with me. The application goes to the FDA. So, I've been working on this for about three hours, and my brain is starting to rebel. This puppy is 1,200 words, and I'm not done yet. That's about six typed pages ... The part that is taking so long is the "brief clinical history of the patient," which should include:the... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3044977 Mon, 30 Nov 2009 22:35:38 +0100 3044977 http://www.medworm.com/index.php?rid=3018977&cid=t_339979_87_f&fid=36438&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FCato-at-liberty%2F%7E3%2Fwhu3WPjVY3M%2F This morning, Politico Arena asks: Do you take Glenn Beck’s “new national movement” seriously? Is the GOP establishment letting itinerant celebrities and talk show stars set the party’s agenda? As Winston Churchill understood, democracy is messy (and, as in his case, sometimes ungrateful).  Glenn Beck is no William F. Buckley Jr.  But then, “Joe the Plumber” probably never read National Review, which like most other journals of “high opinion” was never self-sustaining.  Liberals today, their noses in the air Obama style, look across America from the vantage of the famous New Yorker cover and see pitchfork brigades, forgetting that those who fill the brigades generally love America, which is more than can be said of some of the baggage tha... Cato-at-liberty blogs http://www.medworm.com/rss/comments.php?id=3018977 Mon, 23 Nov 2009 15:27:50 +0100 3018977 http://www.medworm.com/index.php?rid=3004047&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F11%2Fneratinib-something-may-be-happening-.html During all the drama of the past couple of weeks--my getting sick while out of town, ending up in the hospital, and then having to make a decision about radiating the new tumor in my head--my battle to get the drug neratinib on compassionate use grounds kind of fell by the wayside. I didn't forget about it, especially since the new tumor in my skull means my cancer progressed--once again--while I was on chemo, but I couldn't DO much about it until I was home and feeling better, which I am. And in any case, the next move was Dr. Lee's: He was supposed to call the oncologist at Wyeth/Pfizer, Dr. Anna Berkenbilt, to see if the drug company was willing to give me neratinib on compassionate use grounds. (I don't qualify for any of the clinical trials of this drug, be... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=3004047 Tue, 17 Nov 2009 23:20:20 +0100 3004047 http://www.medworm.com/index.php?rid=2995989&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F11%2Fgloomy-sunday.html I've been home from the hospital since Tuesday, but it doesn't seem like I've done much during that time. I spent a couple of days mostly in bed, and I really haven't had much appetite, which is not good. Still haven't unpacked my suitcase from my Omaha trip, and I have a stack of bills to pay and paperwork to sort out. Emotionally, I'm as strong as ever, but physically I'm kind of wobbly. I think the first two things I need to address are my diet and getting some moderate exercise. My friend Laurie took me to the grocery store yesterday, so I am stocked up on extra-healthy food. This is a time for great nutrition. As I write this, I am eating a bowl of made-from-real-oats oatmeal, with brown sugar and half and half. (I forgot to get raisins, a... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2995989 Sun, 15 Nov 2009 19:41:15 +0100 2995989 http://www.medworm.com/index.php?rid=2959075&cid=t_339979_150_f&fid=35777&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FPharmalot%2F%7E3%2FGceAq_QKeMc%2F With all the controversy over off-label promotion - you know, huge settlements in the billions of dollars paid by this or that drugmaker for violating federal law governing such activities - one would think that the pharmaceutical industry would become a little more discreet. Then consider Named Patient Programs. These are compassionate use programs through which patients can be prescribed investigational or approved drugs prior to their commercial launch - outside the US, that is. In other words, such a program fields requests from docs on behalf of patients to receive a med before its licensed in the patient’s home country. This is a worthy goal, to be sure. Compassionate use is an important way to ensure a patient receives a potentially useful treatment that may not otherwise bec... Pharmalot blogs http://www.medworm.com/rss/comments.php?id=2959075 Wed, 04 Nov 2009 14:24:15 +0100 2959075 http://www.medworm.com/index.php?rid=2924934&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fthe-answer-from-wyethpfizer-is-no-sort-of.html I spent three days or so this past week researching the whole "compassionate use/expanded access" issue for neratinib, the new breast cancer targeted therapy that is now in clinical trials. And then I wrote a memo summarizing my findings and the steps my oncologist and I would have to take to get the drug ... most of this from the FDA's Web site and from e-mail exchanges with various people. Step One was for Dr. Lee, my oncologist, to talk to an oncologist at Wyeth (now part of Pfizer) to see if the drug company was willing to give me neratinib on compassionate use grounds since I do not qualify for a clinical trial. Dr. Lee called the Wyeth oncologist, Dr. Anna Berkenbilt, yesterday morning. And, not to drag this out, the answer was NO. Even tho... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2924934 Sat, 24 Oct 2009 17:19:04 +0100 2924934 http://www.medworm.com/index.php?rid=2920442&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fneratinib-yet-one-more-hoop-.html You know, I think it's taking all the skills I learned in journalism school to manage this application to get neratinib on compassionate use/expanded access grounds. Another cancer patient who is working on getting neratinib for the same reason, a young (32) woman who lives in San Francisco, gave me the name of her contact at the FDA. So I e-mailed him this afternoon and told him what I had done so far, and then I asked for his input. He pointed out something that I hadn't known: "Any use of an investigational drug must be cleared through a local institutional review board (in addition to the FDA). If Dr. Lee does not practice through an institution with an IRB, it would be necessary to find an IRB through which he can seek clearance. Some of these IRBs are for-pro... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2920442 Thu, 22 Oct 2009 21:00:43 +0100 2920442 http://www.medworm.com/index.php?rid=2920443&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fcompassionate-use-moving-right-along-.html I've been spending the morning reading through the FDA's new rules for getting a cancer drug on compassionate use grounds. The other term for this is "expanded access," and that seems to be the term the FDA prefers. As far as I can tell, they are the same thing. Here's the definition, from the FDA Web site: "Sometimes patients who have run out of options for treating their serious illness can get access to an unapproved, investigational drug, for the purpose of treatment, outside of the clinical trial. These are patients with a serious or life-threatening disease and no reasonable treatment alternatives, who, consulting with their health-care provider, believe that a specific investigational drug might help them. Under certain circumstances, FDA has t... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2920443 Thu, 22 Oct 2009 19:01:30 +0100 2920443 http://www.medworm.com/index.php?rid=2916399&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fcompassionate-use-new-fda-rules.html Just two months ago, The FDA issued some new rules to help people like me gain access to "investigational drugs" that may help them. "Investigational drugs," in case you aren't up on the jargon, are drugs--like neratinib--that are somewhere in the clinical trial approval process, but have not yet been approved for general use. The "people like me" part is that I don't qualify to take part in a clinical trial, because I have had too much chemo in the past. The other "people like me" part is that I have a life-threatening illness, metastatic breast cancer. Last time we checked, the cancer that was first diagnosed in my right breast in 1998 and then spread to my bones two years later, is now in my right lung, lymph nodes in two... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2916399 Wed, 21 Oct 2009 20:31:03 +0100 2916399 http://www.medworm.com/index.php?rid=2916400&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fneratinib-a-reply-from-wyeth-now-pfizer.html I had e-mailed some questions to the PR people at Wyeth, which makes neratinib, a couple of weeks ago, and re-sent the e-mail two days ago when I hadn't heard back. I finally received a reply yesterday, from a PR person, Danielle Halstrom, who apologized for not getting back to me sooner. She mentioned that Wyeth has been acquired by Pfizer, which someone else had told me, but I don't know what implications that will have for my getting neratinib from Wyeth on compassionate use grounds. (You can read the company's announcement of the acquisition here: Merger)I had asked when neratinib was expected to be approved, and Halstrom replied: "Neratinib has just entered Phase III development, so we cannot predict when it will be approved for use by patients... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2916400 Wed, 21 Oct 2009 18:39:11 +0100 2916400 http://www.medworm.com/index.php?rid=2894726&cid=t_339979_136_f&fid=35303&url=http%3A%2F%2Fwww.assertivepatient.com%2F2009%2F10%2Fneratinib-compassionate-use-application.html My good friend Teri found the link to Wyeth's patient assistance Web page for doctors. Here's that link: Information for HCP "HCP," in case you aren't up on the jargon, means "health care professional."According to the Web site, these are the steps required to enroll a patient:1. Obtain an application and privacy authorization form (link provided).2. Complete the form with the patient.3. Write a prescription for up to a three-month supply of the medication, and specify up to three refills.4. Have the patient sign the privacy authorization form.5. Mail the application and the prescription to the address on the form. All things considered, this isn't too bad. (Of course, I haven't read through the application yet.)I would add this: Keep a c... The Assertive Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=2894726 Wed, 14 Oct 2009 18:21:07 +0100 2894726 http://www.medworm.com/index.php?rid=2702484&cid=t_339979_136_f&fid=37846&url=http%3A%2F%2Fhealthinfoispower.wordpress.com%2F2009%2F08%2F14%2Ffda-issues-final-rules-to-help-patients-gain-access-to-investigational-drugs%2F The U.S. Food and Drug Administration (FDA) published two rules [on August 12, 2009] …that seek to clarify the methods available to seriously ill patients interested in gaining access to investigational drugs and biologics when they are not eligible to participate in a clinical trial and don’t have other satisfactory treatment options. The U.S. Food and [...] (Source: Libby's H*O*P*E*) Libby's H*O*P*E* blogs http://www.medworm.com/rss/comments.php?id=2702484 Sat, 15 Aug 2009 04:34:59 +0100 2702484 http://www.medworm.com/index.php?rid=2349596&cid=t_339979_137_f&fid=35426&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FTheAlzheimersReadingRoom%2F%7E3%2FJMXpTLn2tGw%2Ftwins-suffering-from-alzheimers-get-fda.html The FDA has granted special permission for two, five year old twins girls, to receive intravenous infusions of 2-Hydroxypropyl-beta-Cyclodextrin (also known as HPBCD). The girls received the go ahead for the treatment after a "compassionate use" exception was granted. The girls are suffering from Niemann Pick Type C disease, a fatal cholesterol metabolism disorder that is often referred to as the "Childhood Alzheimer’s".This is a gut wrenching story. If you would like to learn more, or meet Addi and Cassi Hempel, go here.Subscribe to The Alzheimer's Reading Room--via EmailBob DeMarco is a citizen journalist, blogger, and Caregiver. In addition to being an experienced writer he taught at the University of Georgia , was an Associate Director and Limited Partner at Bear Stearns, the CEO of ... Alzheimer's Reading Room, The blogs http://www.medworm.com/rss/comments.php?id=2349596 Thu, 16 Apr 2009 00:43:55 +0100 2349596 http://www.medworm.com/index.php?rid=1886680&cid=t_339979_150_f&fid=35777&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FPharmalot%2F%7E3%2F423167373%2F After several days of drama and debate over death, privilege and compassionate use, Fred Baron will receive the biologic medication to treat his multiple myeolma, according to a brief statement posted by on a blog written by his son, Andrew. The turnabout came after direct pleas by several high-profile personalities - including Hillary Clinton and Lance Armstrong - to Biogen, which sells Tysabri. “Thanks to the persistence and hard work of so many friends, Frederick has received Tysabri,” the statement reads. “The Mayo Clinic working with the FDA found a legal basis for this use. We have every expectation of a positive result. We cannot thank you enough for all of your thoughts and support!” Fred Baron, you may recall, is a prominent Dallas trial lawyer who helped b... Pharmalot blogs http://www.medworm.com/rss/comments.php?id=1886680 Fri, 17 Oct 2008 03:24:42 +0100 1886680 http://www.medworm.com/index.php?rid=1883564&cid=t_339979_150_f&fid=35777&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FPharmalot%2F%7E3%2F421862289%2F Fred Baron, a prominent Dallas trial lawyer who helped bankroll John Edwards’ presidential run and also paid for the former senator’s mistress to leave Chapel Hill, North Carolina, after the affair made national headlines, is dying of multiple myeloma. But money won’t buy the wealthy, 61-year-old Democratic Party fundraiser a medication that may improve his odds of living beyond the next few days - Tysabri, which is sold by Biogen. Despite a furious publicity campaign drummed up by his son, Andrew, Biogen refuses to make the medication available. Never mind that calls to Biogen ceo Jim Mullen were placed by various politicians - Bill and Hillary Clinton, Henry Waxman, Ted Kennedy, Tom Harkin, John Kerry - or their staffs. Oh yes, Lance Armstrong also rang. Mullen is resol... Pharmalot blogs http://www.medworm.com/rss/comments.php?id=1883564 Wed, 15 Oct 2008 19:59:35 +0100 1883564 http://www.medworm.com/index.php?rid=1616822&cid=t_339979_122_f&fid=36582&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FSharpBrains%2F%7E3%2F332710581%2F Daniel Goleman requires no introduction. Personally, of all his books I have read, the one I found most stimulating was Destructive Emotions: A Scientific Dialogue With the Dalai Lama, a superb overview of what emotions are and how we can put them to good use. He is now conducting a great series of audio interviews including one with George Lucas on Educating Hearts and Minds: Rethinking Education. We are honored to bring you a guest post by Daniel Goleman, thanks to our collaboration with Greater Good Magazine, a UC-Berkeley-based quarterly magazine that highlights ground breaking scientific research into the roots of compassion and altruism. Enjoy! -------------------- Hot To Help: When can empathy move us to action? By Daniel Goleman We often emphasize the importance of keeping cool in ... SharpBrains blogs http://www.medworm.com/rss/comments.php?id=1616822 Fri, 11 Jul 2008 14:09:42 +0100 1616822 http://www.medworm.com/index.php?rid=481884&cid=t_339979_87_f&fid=34867&url=http%3A%2F%2Fwww.thediabetesblog.com%2F2007%2F03%2F19%2Fdiabetes-and-relationships%2F Filed under: Type 1, Type 2, Childhood, Adult Onset, Lifestyle, Research, Blogs, Products, Services, SupportThanks to dLife, a whole page of insightful advice is available to help decrypt the otherwise ambiguous code of making it work when it comes to diabetes and relationships. Combining diabetes with a romantic partnership can be a delicate balance. Living with it is one thing, but what about if you are the partner of a person with diabetes? It seems to take superhuman strength to survive the disease alone. Thanks to the good folks at dLife-- you can read more about diabetes and making it a healthy part of your relationship. Questions that plague couples faced with diabetes are intuitively answered by relationship experts. For example: How can a couple overcome the communication quagmi... The Diabetes Blog blogs http://www.medworm.com/rss/comments.php?id=481884 Mon, 19 Mar 2007 04:00:00 +0100 481884