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Many of you know Myrtle from her great support and ongoing participation here for the last several years, and perhaps from her roles in other capacities as a lung cancer survivor doing extremely well for years and years. She also offered incredibly touching and encouraging feedback to me for my efforts long before there was a GRACE, and even just as the prior site OncTalk was just getting off the ground in 2006.
So here’s a hat tip and special thanks to Myrtle for all she does here and elsewhere.
She lifts spirits not only through her own encouraging history but by dedicating a huge amount of her time to helping other people with lung cancer. She and another lung cancer survivor in St. Louis founded the Lung Cancer Connection, a non-profit dedicated to providing awareness, education, and increased funding for lung cancer, along with support for people affected by it.
Our moderators each have their own complementary talents that they provide to this community, and I know that everyone here feels as grateful as I and the other faculty do that we have such compassionate, knowledgeable, and resourceful people helping to provide answers and support. Having Myrtle join their ranks is very fitting, if also long overdue.
Posted in: GeneralThere’s no question that it’s the members of this community and the tone of discussion that makes it such a unique experience, and I and many others here have been extremely impressed with how remarkably expert our handful of moderators can be…highlighting that you don’t need to be a medical faculty member to provide a huge amount of valuable information along with compassion to the many people who come here for answers and support. I know I am only one of the many people who is profoundly grateful for their contributions in holding things together as our traffic has grown.
I’m very pleased to say that Joe Sperrazza has agreed to join this group. It’s hard to believe that it’s only been a week since user Joe Sperrazza joined the GRACE community, but he took to it like he was born to do it. Recommendations to request that he help as a moderator came in within mere days, but he knows how to make an entrance, with references included in his thorough answers, as befitting an engineer with thorough experience in IT and health care, among other roles.
So I’d like to welcome Joe as a moderator and thank him in advance for the terrific insight and support he’ll provide. When I and the other medical faculty see each other in person, we’ve had conversations about the staggering level of sophistication of many of the participants here, and our moderators have been pace-setters who who could more than hold their own in any medical meeting, I suspect.
Posted in: GeneralSeveral days ago, moderator extraordinaire JimC wrote me a message with a straightforward suggestion of how we might make some of the commonly asked questions and answers on our discussion forum far easier for users to find, which would also ensure that far fewer people need to ask the same question because they can’t find the answer anywhere. Frankly, it’s very understandable that people, especially those who are relatively new to the GRACE website, would have difficulty excavating through old threads to discover answers to their questions. For that matter, it can also be painfully difficult for people to find your way back to the faculty posts from the forum. Of course, the net result is that it’s far easier for people ask the most central questions again themselves.
Jim’s suggestion was to generate a list of frequently asked questions (FAQ) in the various subjects, which would also include links to where the answers can be found on the site, in posts, podcasts, and discussion threads. We may also include a brief summary answer preceding the links that can provide further discussion and detail.
Posted in: GeneralGRACE member DonnaS raised a very common and appropriate question (see thread here) about why we don’t more routinely recommend procedures like radiation or radiofrequency ablation, or surgery for people with metastatic cancer, especially if there are advertisements from various centers extolling the virtues of their new techniques for helping people potentially achieve better results than ever thought possible, possibly even a cure when others had said this wasn’t possible.
I’ll admit that these advertisements have been a real pet peeve of mine because I think they take advantage of people’s need for hope and potential desperation. If your oncologist tells you that your metastatic lung cancer isn’t curable and a nearby cancer center runs a newspaper advertisement that describes a testimonial of a patient who seemingly defied the odds by pursuing their institution’s cutting edge technology, shouldn’t this lead you to question your oncologist, pick up the phone, and try to sign up?
Posted in: Cancer Treatments, GeneralIt was just over a year ago that I began using Twitter (user handle: @DrWestGRACE) to provide occasional snippets from my clinic, pass on links to GRACE content and scientific and news articles, and also real-time information from medical meetings. In the last year, Twitter continues to have its appeal to some people but remains one more questionably useful time sieve to many others. I know that while my twitter communications (tweets, in the official language) reach about 750 people these days, that isn’t a major overlap with the target audience for GRACE. In fact, it’s very possible that many of the people who subscribe to receive my tweets don’t actually use Twitter.
Posted in: 3In the podcast I just posted that involved a discussion with Dr. George Blumenschein, medical oncologist at MD Anderson, Dr. Wally Curran, radiation oncologist at Emory University, and myself, we spoke a bit about the challenge of the art vs. the science of medicine. GRACE member David Fourer added a comment highlighting the importance of this acknowledgment, and I think this merits further discussion.
There is a fundamental difference between discussing a person’s situation in the abstract and actually working closely with the patient in the exam room, part of a patient/doctor relationship. The issues that I and the other faculty discuss focus largely on the evidence and the prevailing standards of care, but that only gets you so far. What strikes me is how much every oncologist I know, myself included, deviates from the data-driven standards — but that’s not a bad thing. It’s just that it’s not fair for one physician to comment impartially about the evidence while another is managing the actual patient and situation. That’s apples and oranges. We (oor patients) sometimes try to bridge the gulf by ending a case presentation with, “What would you do if it were your wife/sister/mother?”, recognizing that the evidence only takes us so far.
Posted in: GeneralWe’re bringing in several new people to help out here at GRACE, so I wanted to take a moment to introduce them.
Dr. Antonio Jimeno is a medical oncologist at the University of Colorado who specializes in head and neck cancer and heads that program there. He’s joining us to help provide some important summaries of the field and provide valuable offerings to folks with head and neck cancer who we’d like to help serve better. Born in Valladolid, Spain, he did his medical training there and then in Madrid before coming to the US in 2003 for additional training at Johns Hopkins University (a powerhouse in head and neck cancer, among many others). He moved to Denver in 2008 to work at the University of Colorado, where he also has a great interest in drug development, so he’s thinking not only about our current treatments but about the promising concepts for the future.
Tanisha Mojica is a Nurse Practitioner at MultiCare/Tacoma General Hospital, where she cares directly for cancer patients and helps manage their overall treatment and complications, focusing especially on lung cancer. She has lived in the Pacific Northwest since 2008, previously living in Fairfax, VA, and in NYC before that. She’s very interested in trying to help patients not only in our part of the country, but in providing real-life experience and insight to cancer patients around the globe. Expect to see her jumping in on conversations in the forums soon.
Posted in: GeneralWe just completed our karaoke fundraiser, and it went very well. I’d have to say it could have honestly been the most fun anyone has ever had while working to fight cancer. I’m told I need to work on some dancing moves to go with my “Mack the Knife” and “Fly Me to the Moon”, but that’ll be what makes it worth people coming next year. We had a huge proportion of the people who attended say that they want this to be an annual event, which is always nice to hear, and not something you always hear from the audience at a fundraiser. Special thanks also to the people who couldn’t attend but who donated (it’s not too late!).
It was also the debut of our new GRACE mugs (way cool) and T-shirts, which we’ll try to put up on sale here soon.
Posted in: GeneralMember and moderator Ned (recce101) created a remarkably helpful and comprehensive tutorial for new users that helps us find our way around the forums, takes you through a step by step process of how to ask a question, and also how to browse by subject or review the most recent contributions to the forum. Please know that it’s there, right on the home page, for yourself or for referring other people who are just learning their way around the site.
Please also note that the tutorial starts with a brief introduction of what we really cannot cover. Though we want to be as helpful as possible, we are limited both by the time available to answer questions that can help a maximal number of people, and also the limitation of what we’re allowed to offer legally. Specifically, we can’t translate extensive portions of radiology or pathology reports, and we can’t answer “what should I do” questions, because that would entail making medical recommendations to someone who isn’t our patient.
Posted in: 3
We apologize if you’ve felt like we’ve been testing your patience at times when you’re trying to access information here on the GRACE website. As our traffic has increased (thanks for recommending us!), the website has times when it can’t easily handle the volumes. We’ve shared our servers with other websites, and sometimes it’s not even our traffic as much as others that slow us down.
One way to improve the situation is to move over to our own dedicated servers, and we’re doing that switch one evening in the next few days. Though I was hoping it would have already happened, the server needed to be configured and tested first. We’ll let people know the exact timing very soon. It’s possible that for up to about 12 hours, possibly more, it will temporarily not be possible to enter new content, but I’ll try to keep everyone updated on the home page.
We look forward to this upgrade translating to much shorter wait times, few or no hang-ups of pages, and an overall better experience for everyone. You can go back to recommending GRACE to others and not worry that it’ll slow everyone down.
Of course, this does cost a little more, so I’ll use this as another opportunity to request that people who can provide some support for GRACE will donate to help us deliver support and valuable information to the global cancer community.
Posted in: General
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