GRACE :: General

Introducing Dr. Goodgame

Dr West — Tue, 31 Aug 2010 23:26:27 +0000

You turn your back for a minute, and all of a sudden summer’s over. The weather in Seattle was fall-like yesterday and has now turned to winter-ish in just one more day. My kids are starting school, including the last heading to pre-school.

But it’s also a new month, and with the change from August to September, Dr. Pennell will take some time off, certainly to join us again, and with a new faculty member who I’m very happy to introduce.

Boone Wilder Goodgame, MD, grew up in Uganda, where his father taught at the nation’s only medical school. He moved to Texas at age 14, where he completed high school. He earned his undergraduate degree from the University of Texas in mechanical engineering, and completed medical school at Baylor College of Medicine. He returned to East Africa with his wife and daughter during his final year of medical school, where they worked at a hospital in rural Kenya.

More recently, Dr. Goodgame completed his residency and fellowship at Barnes Jewish Hospital and Washington University School of Medicine in St. Louis, where he worked with my friend Dr. Ramiswamy Govindan. He remained at Washington University on faculty for two years, providing clinical care to cancer patients and conducting clinical and translational research in lung cancer. (In fact, I’ve featured some of his work here).

He has recently returned to his home state to join UT Southwestern in their collaboration with the Seton Family of Hospitals in Austin, Texas as the medical director of the Shivers Cancer Center.

He enjoys all types of outdoor activities, especially with his wife and four children.

As a backdrop, Dr. Pennell and I were speaking with Dr. Goodgame at ASCO a few months ago and were both thinking he’d be great to have as one of the faculty members. Happily, he was already familiar with GRACE, has been very enthusiastic about what we’ve been doing, and was very interested in joining the faculty. He’s going to be a great addition, so look forward to his participation in September and hopefully well beyond.

Welcoming New Faculty Member, Dr. Jared Weiss, As November Guest Faculty I rec
October Comings and Goings It’s
August Transitions With the t

Related posts brought to you by Yet Another Related Posts Plugin.

Welcoming Laya D. as a Moderator

Dr West — Tue, 17 Aug 2010 01:19:53 +0000

When I mentioned to several of the current moderators that I was thinking that Laya would be a very good moderator, I received the response back from several that they were already thinking the exact same thing. She has been a remarkably enthusiastic and sympathetic participant on the site for several months and has demonstrated how possible it is to learn a great deal about lung cancer in a short time.
Laya with her mother

On behalf of the entire GRACE community, I’m grateful that she agreed to officially join as a moderator. I’m raising a virtual glass to her and looking forward to her longitudinal involvement. The cancer community will be better for it.

We welcome your comments.

Related posts brought to you by Yet Another Related Posts Plugin.

August Transitions

Dr West — Mon, 02 Aug 2010 04:33:20 +0000

With the transition from July to August, Dr. Mary Pinder will be ending her stint (but with a sincere hope that we’ll get her back again later this year). Our friend and veteran faculty member Dr. Nate Pennell, medical oncologist and lung cancer expert at the Cleveland Clinic, is joining us for August.

We’ll continue to post some of the transcript from my webinar with Dr. Pennell on ASCO highlights in lung cancer over the next few weeks, so people can add any questions or comments about those topics. And of course, it’ll be great to have his input again on the discussion forum threads. I’m looking forward to having him back on board this month!

Introducing Dr. Goodgame You t

Related posts brought to you by Yet Another Related Posts Plugin.

Myrtle the Moderator

Dr West — Mon, 12 Jul 2010 16:39:53 +0000

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.

Related posts brought to you by Yet Another Related Posts Plugin.

Welcome and Thanks to Joe Sperrazza as a New Moderator

Dr West — Mon, 28 Jun 2010 04:18:01 +0000

There’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.

Feel free to share any welcoming comments or additional thoughts.

Myrtle the Moderator Many
Welcoming Laya D. as a Moderator When
Big Thanks to Our Community Forum Moderators I wanted

Related posts brought to you by Yet Another Related Posts Plugin.

Just the FAQs, Ma’am

Dr West — Fri, 04 Jun 2010 22:41:40 +0000

Several 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.

One other helpful way to offer a central place for core information is in the reference library that is currently being compiled (for lung cancer thus far, and still just a beginning): more and more of these summary chapters will be integrated in the coming weeks and months. These will provide a more general overview of a subject area, rather than a focused discussion of a common question in cancer management.

The moderators and some of the faculty are working on developing this FAQ resource, but we would also be very happy to gather additional input from others here about any suggested questions/topics that seem to emerge often enough here to warrant them being listed in a central place for our members. Check out this partial list and please offer your suggestions:

Cancer 101/General

Does sugar feed cancer?
What does a PET scan tell us?
What is the difference between a PET scan and a CT scan for detecting and monitoring cancer? What are the criteria for assessing response?
Should I take vitamin supplements while receiving treatment for lung cancer (e.g., chemotherapy)?
My doctor is checking CEA (or CA-125, or CA 19.9) levels during my treatment. If the number is going up, is that an indication that the current treatment is not working and it’s time to switch to something else?
I just learned that I have metastatic cancer, and my doctor says I can’t have surgery. Why can’t the surgeon just take out all of the cancer everywhere they can see it?

Radiation

What are the likely side effects of whole brain radiation?
Which is better for treating brain mets: whole brain radiation or stereotactic radiation (gamma knife)?
What can be done if my brain metastases progress after whole brain radiation?

Lung

I just had surgery, and my doctor is talking to me about chemotherapy. Is this generally a good idea, and what are the treatment options?
What is the right treatment to start with for advanced non-small cell lung cancer?
I am starting chemotherapy for advanced non-small cell lung cancer. How many chemotherapy treatments (cycles) will I have? What is the optimum number of treatments?
My cancer is progressing after first line treatment for advanced non-small cell lung cancer. What are the options for the next line of treatment?
I’ve received 4 (or 6) cycles of chemo (with or without avastin/bevacizumab), and my cancer has responded. My oncologist is now talking about continuing it or watching me off of treatment. What are the merits of each approach?
I’ve got stage IV non-small cell lung cancer and have had a good response to my initial treatment. I’ve been talking with my doctor about possibly getting radiation to the residual area(s) of cancer. What are the pros and cons of this approach?
I’m hearing about different tests to check for whether I’ll respond to a targeted therapy like Iressa (gefitinib) or Tarceva (erlotinib). What are the tests, and what do they mean?
My doctor tells me that Tarceva (erlotinib) is only useful for people with an EGFR mutation. Is there any use in trying an EGFR inhibitor if I don’t fit the profile for having an EGFR mutation or know I don’t have a mutation?

Cancer Treatments

My insurance won’t pay for Tarceva - where can I get help?
Where can I find information on clinical trials?
I’m having trouble managing the side effects of Tarceva. Are there any tips to managing them? My doctor is telling me I need to have a dose reduction (or delay, or break) in my treatment. Is this going to be harmful for me?

Please add questions, and the links to any posts/threads that can help address them…

Like all of the best significant improvements, this shouldn’t require a huge amount of technical effort or tons of time to complete. We’ll target having this up, at least an initial version in the next month or two.

Related posts brought to you by Yet Another Related Posts Plugin.

Too Good to Be True? Let’s Check What’s Really Possible!

Dr West — Sun, 30 May 2010 19:09:58 +0000

GRACE 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?

People shouldn’t blindly accept conventional wisdom, and in fact there are certainly people with advanced lung cancer who have done remarkably well and even appear to be cured years after diagnosis (described in part by the concept of the “precocious metastasis” (summarized, and discussed in podcast). In fact, there are even studies that are beginning to study the question of whether it is feasible to treat people with minimal residual viable disease with curative intent.

It’s not that individual cases don’t merit very personalized decision-making, and most of us who work in cancer care have come to appreciate that almost anything is possible. The problem is that mass-marketing these possibilities is misleading, and I suspect a mechanism to maximize profit by extending an expensive intervention to a market of both people who are reasonable as well as much less appropriate candidates for these approaches (although they will certainly be limited to people who can pay for them, either themselves or through insurance — they aren’t being done as charity care).

All of us would love to learn about successes for the people who defy the odds and highlight what is possible. However, we don’t want to be manipulated by institutions or companies that are duping people into pursuing futile treatments. So I’m going to request that people please add in the comments here, or in an e-mail to me at west@cancergrace.org, any internet links or details of contact information for places that are making claims that don’t seem to jibe with what you’re hearing here about standards of care and might seem to be improbably optimistic, if not quite too good to be true.

Whether it’s a radiation approach, radiofrequency ablation, new surgery, investigational agent, or novel test that promises things that we haven’t extolled here, I’d love to chase down as much truth as I can find from the sources. I’ll be eager to relate any information I can get about the the success stories — and we can all probably learn from what makes them success stories — as well as the possible sobering reality that many of these advertisements are actually delivering false promises.

Let’s shine some light here and see what we find. I’ve had enough of patients being preyed upon based on desperation, but if I’m wrong, people here should learn of the successes of the places that are setting themselves apart.

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

The Utility of Twitter to the GRACE Audience

Dr West — Sun, 30 May 2010 18:04:25 +0000

It 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.

With ASCO 2010 coming up, which will again find me writing tweets from the presentation sessions to provide immediate feedback of the information being provided, it leads me to wonder what value it really provides. Specifically, I’d like to ask people to comment on whether there is any use to maintaining the GRACE page with my Twitter content. As we think about how to improve the site, I’d like to remove unnecessary links that just add noise. People can access the same information if they have a twitter account (it’s free), but the GRACE page can be useful if people don’t want to manage one extra step but still want the information.

So I welcome your thoughts. Is there enough value in maintaining this area of the website for Twitter content, or is it just an unnecessary piece of clutter? Are people using twitter? Are there other ways that we could provide information via Twitter but aren’t yet?

Support GRACE with a Vote for us for a Shorty Award for Non-Profit Work We underst

Related posts brought to you by Yet Another Related Posts Plugin.

“What Would You Do If It Were Your Wife?”: The Gulf between the Data and Real Life

Dr West — Sat, 29 May 2010 00:54:15 +0000

In 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.

I run an annual lung cancer conference for cancer professionals in which I and my colleagues at my own institution present challenging cases that don’t have an obvious right answer to other experts. We describe what we did, which may not have a lot of evidence to support it, although it’s fair to say that in oncology we are faced every day with situations that don’t have any evidence and that require us to use judgment (what chemo to give someone with lung cancer after a kidney transplant? There’s never been and never will be a trial that gives us any insight.) Often, our guest colleagues from another institution may pontificate about what the evidence does or doesn’t support, but that can’t limit the real practice of real patients in the trenches. I happen to know that many of them (us) get very, very creative in their (our) own patient management, regardless of how cerebral we might all sound in discussing what the evidence demonstrates.

When I’m serving on the panel at a conference or sitting in on the tumor board at another institution, I’m the one making judgments in the abstract about the management of patients who have messier real life situations for the doctors working with them. It’s easy for any of us to get haughty about what the evidence does or doesn’t show when we’re looking from 20,000 feet. In fact, I’d venture to say that if we were to review the clinic charts from the actual clinic patients of any oncologist, whether generalist or academic expert, we’d find that they do plenty of cancer management that deviates from any evidence and is based on judgments by the doctor, by the patient’s perspective, or both. Of course, this isn’t a bad thing (except that I can’t just review other people’s charts, because that’s a HIPAA violation).

Everyone considers themselves a better than average driver, and most oncologists fancy themselves to very evidence-based, but that’s based on our abstract view of what we’re taught that we should be. Of course, the evidence should inform our recommendations, but I think it’s very important to realize that the abstract idea of what the data tell us is no substitute for managing patients in the real world.

By the same token, of course this also means that anyone reading our recommendations here should take them with a grain of salt, because there is always room for individualizing and good judgment on a case by case basis.

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

New Faces, New Ideas at GRACE

Dr West — Fri, 21 May 2010 01:11:00 +0000

We’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.

We’ve got other people also planning to help out in other disciplines, too, including nutrition in cancer, and other oncology nursing experts who can provide great insights based on their extensive experience managing the daily problems that patients face.

Related posts brought to you by Yet Another Related Posts Plugin.