January has come and now gone…just like that.  And we know that Dr. Sanborn and Dr. Pinder are wonderfully helpful and truly committed to the GRACE community — so much so that we can only thank them for their participation this past month and take comfort in knowing that we’ll bring them back, and that Drs. Walko, Loiselle, and Cianfrocca will stay on with me.  We’re also going to try to make up for their leaving by heaping on a bounty of people and activities this month.

First, we’ll have three rotating faculty joining us again this month.  Dr. Nate Pennell from the Cleveland Clinic will be returning, as will Dr. Stephanie Harman from Stanford, with her particular specialty in symptom management and supportive care, and also Dr. Hensing from the University of Chicago and NorthShort University HealthSystem.  All have worked with GRACE before, and we’re excited to have them return.

Second, we are literally in the final steps before switching to the new, better software for the website.  The blog side (all of the post content) will look pretty similar, with mostly cosmetic changes, except that everything will function much better because we’ll be on the latest version of the right software for us… at this point, we’ve really outgrown the clunky outdated work-around version we’ve relied on up to now.  Things like the search function will not only work but will even be able to be filtered by subject, so that you’ll be able to sort and find only the information relevant to your cancer:

(click on image to enlarge)

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   A few days ago, I was responding in the discussion forum, getting very critical of the recommendation in favor of stereotactic radiosurgery (SRS) (e.g., Gamma Knife, Cyber Knife) for people with many brain lesions, when the evidence would say that whole brain radiation (WBR) is a more appropriate choice.  I suggested that this was a zealous recommendation by ill-informed and manipulated patients and/or radiation oncologists who’d stand to profit from this expensive procedure.  Dr. Loiselle, our beloved radiation oncologist on faculty, provided a thoughtful counterpoint that highlighted that not only is SRS not necessarily more lucrative than WBR for some radiation oncologists, it’s recommended by some of them because they’ve seen a few memorable and perhaps haunting cases of cognitive deficits following WBR that might have left them unusually gun-shy about favoring WBR even when the evidence from larger studies suggests that the probability of significant problems is low.  Of cource, such scary cases are also the cautionary tales that circulate in online discussions and lead patients and caregivers to be more fearful than the evidence would suggest they should be.

    Then it hit my why it’s so hard to dispel these perceptions.  Discussing statistics is all well and good, but our brains are wired for narrative stories, as I’ve discussed in the past, and knowing about or even just hearing about a case of someone who had a dreaded complication or had a phenomenal result with a treatment has as much of impact, if not a greater one, than having someone recite stats and trends.  We don’t think in terms of medians and percentages: we want to know how other people like us have done.  People go to our discussion forums or other online communities and ask how others have tolerated the treatment they’re going to do.  We know that people are quite variable in how they do, and we should understand that hearing from a handful of not necessarily representative people online isn’t more predictive than the collective experiences reported in large trials — but we still override stats with stories.

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GRACE has historically done a poor job of capitalizing on the good will and range of talents available among the many people who support what we do and want to help in some way.  In many ways, this has been my fault for being too preoccupied with the current needs of the website and community to invest the time to initiate meaningful opportunities to volunteer.  But as we’ve seen from the collective intelligence and dedication of our limited experience like having the moderators take a more active role on the forums, we can do a lot more and be a stronger true network by having many people contribute than by having all responsibility fall to just one or a few people.

I’d like to kick start an actual volunteer program, suggest a few key roles for people to help fill (and not ruling out the potential for a paid position), but also hoping to initiate a discussion in which people can offer your own suggestions for skills we may be overlooking.  Please consider whether one or more of these seems feasible for you, or suggest that someone you know with the talent, time, and inclination could help out.

Here are some of the areas where we could really use some ongoing assistance, which I don’t think would need to be prohibitively time-consuming for anyone:

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I wanted to raise a glass and wish all of you and your friends and family a happy and healthy 2012.

With the new month, we say thanks and goodbye to Drs. Ramchandran, who had to cut out a couple of weeks ago, and Dr. Weiss, who left for a trip to Belize a few days ago but will be back in time to review the highlights from 2011 in lung cancer in a free webinar on January 19th (more information and free registration here), where he has given us the teaser that he’ll be relaying some good news of the personal kind and has even  promised (threatened?) to sing.

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One of the central tenets of the “e-patient” movement that is, I believe, revolutionizing how health care is practiced is the concept that physicians shouldn’t be the gatekeepers of the lab tests, scan results, and most other critically important information about a patient’s health.  This has led my friend e-Patient Dave to focus on the key refrain “Gimme My Damn Data” as a critically important theme for empowering patients.  He’s just leading the charge here, as the US Department of Health and Human Services in collaboration with the Centerse for Medicare and Medicaid Services, the Centers for Disease Control and Prevention, and the Office of Civil Rights have proposed a new rule that would allow patients to access their own test results directly from the lab by request (which could be in paper or electronic).  Of course, more and more patients are coming online with their questions about lab results, scan findings, and pathology reports, and we struggle here with how much information we can feasibly provide and where we’re overstepping the bounds of what should be handled by the medical team directly involved?

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   We’re at the end of our Annual Appeal, and we don’t do a hard sell asking for support all year long.  We do need funds to keep providing ongoing immediate information about new evidence coming out in real time, and an interactive discussion forum with expert medical professionals who are really motivated just to have people do as well as they can, and to provide a valuable supplement to the local medical teams that people have.

   People comment every day about how helpful our information and the interactive forum is: we know that people reach out to us at all hours, between doctor visits, and to get a lot of additional insight, both from docs and from knowledgeable patients and caregivers who have been down the same road.  So now, at the end of the year, and the end of our Annual Appeal, please think about how we’re working to help a global community of people affected by cancer, many of whom without experts available for them, and donate. 

   Of course, donations are tax-deductible, so don’t wait, and send in a donation or do it online.  We promise not to bug you throughout the year.

To all of those in the GRACE community who celebrate it, Merry Christmas!

I’m very happy to welcome Dr. Christine Walko, a clinical pharmacist at the Lineberger Comprehensive Cancer Center at the University of Chapel Hill in North Carolina, where she is an Assistant Professor and Director of the Clinical Pharmacology Lab.

She earned her PharmD at Duquesne University in Pittsburgh before heading to Medical College of Virginia for her residency and then to the University of North Carolina for additional residency and fellowship training, staying on as a faculty since then.  She has an extensive knowledge of the practical issues around drugs and particularly oncology drugs, but along with that knowledge, she’s known as a great communicator: she has won “Professor of the Year” at the UNC School of Pharmacy over and over in the past few years, and Dr. Weiss works regularly with her and strongly recommended her.

She’s going to help out on the forums with drug-related questions, which is right in her wheelhouse, and she might also write a few posts on topics she speaks with patients about.  I’m looking forward to having her participate.

We’re moving toward having a group of “specialists on demand” who won’t necessarily be chiming in on the forum discussions every day, especially if we think there might only be one or a few questions per week that are ideally covered by them, but rather have offered to make themselves available to help address a relevant question that is well within their expertise.  In addition to having someone like Dr. Walko, we’ve got Dr. Loiselle doing that in radiation oncology, and we’re looking forward to bringing in a couple of radiologists to help with imaging questions, and a couple of thoracic surgeons to help with lung surgery topics as well.  I know I’m not the only one who has been very happy with Dr. Loiselle’s guidance when we need him, and it’ll be wonderful to broaden the expertise of GRACE faculty by having Dr. Walko and others bring their own knowledge directly to the GRACE community.

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   Many of you had difficulty getting to the GRACE website yesterday after a Google warning noted that there was malware infection somewhere on the site.  This apparently occurred very late on Sunday or early Monday morning, and I don’t yet have all of the details.  The short summary is that it’s fixed now, and my understanding is that Google has reviewed the site and considers us infection-free.

Thanks to the many people who alerted me via e-mail about this in the very early hours, so that we could jump on this before the sun came up.   (Oh, and that was quite a treat to wake up to on a Monday morning, I can tell you…) Special thanks to all of you who helped spread the word and whatever updates we could provide on our repair status to our members we share with other websites in the broader online cancer community.  Big thanks to Sean Parr of WebSiteMovers, who dropped everything he was doing on completing our software upgrade to make this fix a high priority; to Denise Brock, who yet again rises to the occasion and coordinates the team when I’m just trying to keep my head above water in the clinic; to Mark Lindsey, who edits our podcasts but also jumps in to provide back end tech support whenever it’s needed; and to Joe Sperrazza, who has been dealing with a lot, but who jumped in to help provide needed oversight (out of respect for him, I will leave it to him to speak more about his situation if and when he is inclined to do so).

   A few GRACE members deserve kudos from all of us, starting with me.  First, JimC deletes about 75% of the would-be spam from the site before I get to the website each day and may be personally responsible for averting a few of these episodes from ever happening (as if he needed to prove his worth here).  Lesley from Tasmania (cosmo72) did some back end sleuthing that led to some terrific insights I relayed to the technical team, because it was over my head but definitely valuable, and Craig also had some constructive thoughts about troubleshooting to minimize the risk of this happening again: we should see if we can bring them in to helping review and improve our security efforts.

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Most of you who have been lurkers or contributors on GRACE already know just how much this website has helped and continues to help patients and caregivers dealing with a lung cancer diagnosis. For many of us, GRACE and its brilliant faculty serve as a lifeline in unchartered shark-infested waters. My own involvement began on January 28, 2010 - - the day that my beautiful 58 years-young mother was diagnosed with Stage IIIA NSCLC-adenocarcinoma.  That day, my world (and my family’s world) collapsed and became unbearably dark. Through our disbelief, sobs, and screams, we begged, pleaded, and bargained - - with God, with the Universe, with anyone who would listen. We were confused. We wanted to just wake-up from the nightmare that had become our reality.  We didn’t quite understand what the doctors were telling us or how to process the information that was being relayed. During this time, even the physicians in my family fell eerily quiet. They were petrified. We all were petrified.

For me personally - - as my Mom’s only child - - I needed to understand what was going on and I needed to get some control over the “information.” I spent my days and insomnic nights surfing the Net - - trying to collect information and to learn what exactly it was that we were dealing with. The information that I kept coming across either was written for a scientific/medically-trained audience (which I am not) or was outdated or was trite, broad, and gloomy. Instead of helping me, I felt that it was slowly suffocating me.

And then came GRACE. . .

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