The GRACE site is open and active, with all of the post content moved over, and the forum section still rather new but open for business.  I mention this because I think many OncTalk members still haven’t checked in there, but within the next few days we’re going to freeze the OncTalk forums and have all Q&A activity moving forward take place at the GRACE Discussion Forum. 

   So this would be a very good time for those with any intention of participating to try to log in see if things seem to be working OK.  From now on, your OncTalk and GRACE passwords and profiles won’t be synchronized, so if you make a new password for GRACE, this won’t work on OncTalk. 

   If you have problems, please add to the OncTalk or GRACE forums by leaving a comment in the folders soliciting for problems.  Please specify if:

1) You can’t log in

2) You tried to get the system to e-mail you a new password, but it failed. 

3) There are typos, formatting errors, etc. (I already know the text size buttons don’t work outside of the home page, and we’ll switch the them so (-) is on the left, which makes more sense to me, at least). 

4) Other significant problems

  The GRACE site also includes a very robust profle function for people to provide bios, avatar pictures, etc, so I’ll encourage you to tailor it beyond the blank text fields t add some personality, treatment background, etc.,  Also, please note that all members will initially appear as a “newbie” with no prior posts, but as people participate at GRACE I’ll correct the number of posts to reflect prior acvitity on OncTalk. 

   I’ll be checking and responding over at GRACE every day, and soon that will be the only place, so jump in and help modify it now, while the developers are still tweaking it every day or so.

   I’ve previously described the concept of the “precocious metastasis”, the situation in which a patient presents with early stage NSCLC, except for a single metastasis, most typically in the brain or adrenal gland (see prior post).  Our conventional teaching is that a patient with any metastatic disease almost certainly has additional micrometastatic disease, cancer cells floating in the bloodstream, that will inevitably lead to development of new areas of visible metastatic disease in the future (so having a small amount of metastatic disease would be like being “a little pregnant”).  But as with so much of medicine, there are few absolutes, and about 25% of patients with solitary lesions that are surgically removed (or, presumably, alternatively, radiated with an approach like sterotectic radiosurgery, but this hasn’t really been proven) can have long-term survival.  And a recent publication in the Journal of Clinical Oncology by several investigators in the lung cancer group at Moffitt Cancer Center in Tampa, FL (abstract here) provides a much needed characterization of outcomes for patients with solitary adrenal metastases who have undergone an adrenalectomy (removing one of the two adrenal glands, above the kidneys).
 
   The study was a retrospective review of published reports, with at least four patients per publication, who had undergone adrenalectomy along with treatment of their early stage NSCLC.  Importantly, the study divided patients into those who had synchronous metastases, meaning that the adrenal met was present when they first found and treated the main tumor in the chest, and metachronous lesions, which are mets that were not present initially but became evident an interval of time after a patient’s initial presentation and treatment (actually, a cutoff of six months is the usual definition of synchronous vs. metachronous). 
 
   Oncologists and surgeons have often perceived that patients with synchronous cancers are less likely to do well than those who return with a single metastasis a year or two after their treatment.  The metachronous lesion that occurs 18 months later, for instance, has already demonstrated that new lesions aren’t going to be popping up rapidly.  With a synchronous metastasis, it’s possible that this is just a snapshot in time, and the cancer is just early on its way to spreading to many areas in the body.  (more…)

  The epidermal growth factor receptor (EGFR) is a central component of a cell pathway for growth and cell division that is thought to be affected in many cancers, including NSCLC.  EGFR inhibitors have been the focus of clinical trials for several years and are now used for many types of cancer.  Nearly all of this work has focused on either oral tyrosine kinase inhibitors that inhibit the back end activity of the receptor inside the cell or monoclonal antibodies that block the extracellular front end of the receptor that binds to the ligand (the matching protein that attaches to the receptor) that is supposed to trigger the receptor.  But a new study was just published in the Journal of Clinical Oncology that describes the early experience of studying a new vaccine against EGFR in the treatment of advanced NSCLC (abstract here).

   This study came out of Cuba (investigators not known to me) and used a vaccine made of one of the proteins that serves as a ligand for EGFR, attached to a carrier protein.  This vaccine is given with an adjuvant, which in this case doesn’t mean post-operative treatment, but rather refers to a treatment that is given with a vaccine to help stimulate the immune system to generate a robust immune response.

   A total of 80 patients with advanced NSCLC who had completed first line platinum-based chemo (4-6 cycles) at least 28 days earlier were then randomized (1:1, so evenly divided) between the active vaccine approach and “supportive care”, or general follow-up and treatment of any specific symptoms a patient developed.  The patients who received the actual treatment received a low dose of cyclophosphamide, a chemotherapy that in this setting was used as an immunostimulant/adjuvant, 3 days before the vaccine, and then the vaccine injection on days 1, 7, 14, 28, and then monthly after that. (more…)

  In the process of our move to the new website for the nonprofit GRACE, we’ve moved the content there and are transitioning the new forum activity over to GRACE.  The forums at OncTalk will be archived soon, still browsable, but soon no longer able to be written to.  And from now on, I’ll have new posts over at GRACE, transitioning away from here, and you will be able to leave comments after posts over at GRACE but not at OncTalk.

  In the meantime, the membership rolls for OncTalk have been transferred to GRACE and should be current as of 4/15/08.  But moving forward, people wishing to register as new members need to do that through the GRACE website and post there.  The link for new member registration is here.

  Please add your questions or problems, whether with logging in or identifying other bugs to fix, on the new forum folders/threads developed for me and the tech support people to check and address.  There’s one on OncTalk here, and another on the GRACE forums here.  We’ll try to fix everything in the next few days, before we close off the OncTalk forums and start redirecting everyone to GRACE.

  Finally, for the handful of you who had already added a new avatar photo and modified your profiles on GRACE (and the profile is much more robust on GRACE than for OncTalk), that was erased in the conversion, so please edit/upload again.  I don’t think we’ll be doing any more transitions, so it should stay the way you want it once you edit your profile as you’d like.

We’re doing this again. But now, there are two web guys on the job. I really think we’re close. So we’re going to go through this process from a few weeks ago ONE MORE TIME:

Continuing the process of transitioning over to a new website run by GRACE, we’re moving more content from OncTalk over there, but the posts and comments need to be temporarily frozen (late on March 25, 2008). I think only overnight and back up March 26th, but if things aren’t quite right at the moment, it’s not your system, and it’s just temporary.

During that time, here’s what’s not available:

1) We can’t leave new posts or post comments

2) We can’t have new people register as members

The forum section is still open for business from registered members.

So you can save post comments or put them in the forum section if you’re a member. If you’re not and you want to be, don’t lose faith. We’ll get

What will happen next? After debugging and tweaking to make the new site more functional and beautiful, or at least aesthetically pleasing, we’ll move the forums off OncTalk and over to GRACE. The OncTalk forums will be frozen but readable and searchable, but the new site will have the more current discussions, and with more features. More on that later.

For now, use the forums for questions and comments, and just hold on for a day if you want to join as a new member.

  The tech support folks did some adjustments and debugging late yesterday, particularly to try to ensure that password recovery works when you request an e-mail for a new one.  They think you should now be able to log into the main site home page (www.cancergrace.org) as well as the forum page (www.cancergrace.org/forums), and that the password recovery system should work.  They test a few situations, but it would be helpful if people could try to log-in, perhaps simulate not being able to remember your password and type in something wrong (for some, this may not require a simulation), then see if you can request and successfully receive a new password.  You can continue to leave comments here, which the tech guys will check today to monitor for success or failure before moving over tonight if all goes well. 

   I’m continuing to suggest minor changes, such as increasing font sizes where they’re incredibly small, so if you don’t see some link it would be helpful to add, etc., now is a great time to write down and send in your wish list. 

   Thanks for beta testing for us.

   OK folks, the web guys think they fixed the GRACE sign-in issues AND (let’s hope) the lack of e-mail response when users request a new password.  Please report any emerging or continuing problems to me (west@cancergrace.org), or you should still be able to start a thread on the OncTalk forums for a while to generate your own bug list.  We’re obviously going to need to address any residual problems as a very high priority (not that it wasn’t before, but now we’re burning the boats and moving ahead with GRACE, so that should provide extra incentive).

   Tonight or tomorrow evening, we’re going to shut down OncTalk for comments and new user registrations, while the current information, including all posts and comments, are moved over to GRACE (along with the user list).  If all goes well, information here will continue to be readable for a while (before people are automatically redirected to the GRACE website), but:

1) new users will need to register at GRACE, not OncTalk

2) new posts will be up at GRACE, not OncTalk, except for notices like this

3) people will be able to make comments at the GRACE site, not on OncTalk

4) very soon, we’ll freeze the forums here, which will remain browsable and searchable, but people won’t be able to add to them. Instead, new threads and responses will be at the GRACE forums (www.cancergrace.org/forums).  And users that join after today will only be able to post on the GRACE forums. 

   I expect that there will be a few bumps in the road, but just let me know what isn’t working, and we’ll jump on these problems.  In the end, GRACE will provide more features, beyond what we could build into OncTalk. 

   The leading side effect of EGFR inhibitors, both the oral tyrosine kinase inhibitors (such as tarceva (erlotinib)) and the IV monoclonal antibodies (such as erbitux (cetuximab)), is rash, dryness, and other skin side effects.  While a rash sounds modest to many people compared to many of the leading problems with chemo, many of the members here can attest that while an EGFR rash can range be as mild as a pimple or two, it can also be itchy, painful, and be as severe as a skin rash covering large amounts of the body, sometimes with open lesions.  And for some patients, the skin side effects can require dose reductions or even lead patients to discontinue their EGFR inhibitor, even if it might help against their lung cancer.

   As described in a press release last week, Hana Biosciences, based in South San Francisco, has initiated a study of topical menadione, a precursor to forms of vitamin K that also activates EGFR.  This topical medication is being studied in the setting of both a prophylactic treatment and as a treatment for skin side effects that emerge on treatment.  This research is being led by Dr. Mario Lacouture at Northwestern, who I’d consider to be the leading expert in EGFR rash treatment right now. 

   There have been several posts and forum threads on managing the rash, but it’s very encouraging to see that not only is more attention being paid to this problem, there are actually trials being run, even with new agents, that are trying to reduce a side effect that can significantly worsen the quality of life for patients on EGFR inhibitors, sometimes even keeping them from getting the drug, or perhaps a dose that could be managed chronically if the rash was controlled more effectively.

  It’s getting to that time of actually moving it all over to GRACE.  The web guys are planning to make a few more edits early this week, then update the posts to add content put on OncTalk over the last few weeks, and then have new content go over to GRACE, which you’ll notice is divided into different subjects, both in division of the posts and in the fourm questions.  Lung cancer is a big one, but now Leah and potentially other contributors will have a separate social work/coping with cancer section, complementary medicine will have posts in that separate section, questions about the various cancer treatments and supportive care is on its own section, etc.  One key reason that sections on symptom management and side-effects of treatments are a distinct section rather than part of the lung cancer section is that pain control or side effects of tarceva or chemo or whatever are generally the same for a lung cancer patient as well as a colon cancer patient.  Eventually I may have experts in other types of cancer join in on a separate subject section for colon cancer, prostate cancer, etc., and this way it’s possible for everyone to share access to tips on managing side effects or cancer symptoms.

   In anticipation of the move to the new site, I wanted to give people a chance to navigate the new forums and leave some questions/comments, just testing the waters before we freeze the OncTalk forum section and leave it for browsing but no new threads or comments on existing threads.  Importantly, the old forums will be searchable from the GRACE site, which will return results of content on both the GRACE site and the OncTalk forum pages.

   Your current log-in should work.  Once in, it should now be much easier to edit your profile, add an avatar, and now send private e-mail to other users.   We can change the structure and certainly fix bugs (and I’m sure there will be some bugs) — just let us know.  The forum page is here.   Feel free to navigate around the rest of the site, but know that there are still a few small edits we’re making (including updating the supporter list, so for those of you who have donated in the last month, know that the page will be updated to recognize you within the next 48 hours). 

   So look around, please feel free and quite encouraged to leave questions and comments there.  For the next few days at least, I’ll plan to check and answer questions at both the OncTalk and GRACE forums.  But know that in a short time we’re moving exclusively to GRACE, so the OncTalk threads will be readable but frozen.

   Thanks, and post at the GRACE or OncTalk forums, or e-mail me at west@cancergrace.org if you have questions, comments, or bugs to report.

(Click on image to enlarge)

   Tomorrow we start our fourth MITOC program, a meeting here on the Seattle waterfront that brings together a group of national experts in pulmonology, surgery, radiation oncology, and medical oncology to discuss new information and options for managing the tough real-life lung cancer cases that don’t have a straightforward answer.  We started this conference for our medical colleagues, knowing that it’s hard to learn that much from 10 hours of one lecture after another, but it’s much easier to learn by doing and discussing.  Each year, I work with great thoracic surgeon Eric Vallieres and expert radiation oncologist Vivek Mehta from my own institution to put together a collection of tough cases that help frame clinical dilemmas that become a springboard for rich (and often slightly heated) discussion.  We present a sketch of how a patient presented, show images from their scans, then ask the audience and faculty in several steps as the case develops what they would do next among several reasonable options.  We have a few short lectures, but the majority of the content is in the form of the discussions among the faculty panel members about the pros and cons of various approaches, along with comments and questions from our audience of doctors who navigate these challenges every day.

    Both the audience and the faculty enjoy learning how other smart people think about managing tough cases.  Hearing other points of view helps us to avoid becoming trapped in my own interpretation and treatment style, or having the same group of doctors from an institution become an “echo chamber” that becomes insulated from other approaches.  There are clearly many ways to approach the cases that fall between the cracks, and it may be refreshing or mortifying to see that even the experts often don’t reach a unanimous (or even consensus) answer on the best course of action.

Here are the basic outlines of thorny cases we’ll be covering this year:

1) An elderly patient who is on the border of feasibility for surgery for early NSCLC

2) A young patient with apparent residual viable tumor after chemo and radiation for locally advanced NSCLC

3) An 81 year old never-smoking Asian woman with stage III NSCLC

4) A middle aged woman with newly diagnosed extensive SCLC

5) A 54 year old man with a solitary brain metastasis and a small NSCLC tumor in the chest

6) A 63 year old man with a large mediastinal mass that is ultimately diagnosed as thymoma (a topic not covered yet here)

7) A woman with a Pancoast (superior sulcus) tumor of borderline potential resectability

8) An elderly woman with metastatic NSCLC and a central tumor wrapped around a major blood vessel

   In the next few weeks I’ll try to present information on these cases and some of the dilemmas and debates that each introduces.

   If I’m a little slow on responding, it’s because this is going to be most of what I think about and work on until Saturday afternoon.

More later. 

by Leah deRoulet, MSW

   After covering the highlights of Medicare parts A, B, and C in the last post, we’ll now move to Part D, the plan that provides outpatient prescription drug coverage.  If one can afford it, it is usually best to purchase the plan that covers most of the medications you are taking, and this might be available through the Medigap supplemental plan you choose.  Then you have one plan that covers both Parts B and D.  In cases where this is not affordable, and you do not have prescriptions for many oral drugs, you might be able to get by with an inexpensive Part D supplement plan.  I have one patient who pays $25.50 per month for her plan, as well as the co-pays and the deductibles required for the plan.  But this is a very reasonable plan.  I have other patients who are paying $95.00 or more for their plans, but some of these more expensive plans also covered the dreaded “donut hole”, or coverage gap that occurs after a certain amount of money is spent by Medicare to cover the cost of the drugs.  Although there may be some differences in charges relative as to how much money should be spent, for the most part there are 4 areas of Part D that must be traversed.  The first one is the initial deductible.  The second one is the area where Medicare pays its share of the costs except for the co-pay, which is 25% of the cost of the drugs.  The third area is the coverage gap or donut hole, where Medicare pays absolutely nothing until the patient accrues a total amount of out of pocket spending, which can be as low as $3,800.00, including the deductibles and the co-pays and cost of the drugs while the patient is in the donut hole.  At the point at which the out of pocket spending meets the necessary monetary criteria (in 2008, that figure is $4,050.00), Medicare then picks up all of the cost of the drugs at a 95% payment rate, and the patient pays a minimal co-pay, usually no greater than $5-10.  This is returned to zero again at the beginning of every year, when the plan starts fresh for the next year, and the deductible (and donut hole) kicks in again. (more…)

by Leah deRoulet, MSW

   Recently I’ve had a few patients who wanted to come in and discuss their confusion about all of the Medicare plans since they had to make decisions whether or not to actually accept Medicare as their health insurance plan or stay on the plan they currently had.  Patients who have been granted Social Security Disability and are on it for 24 months receive a letter from the Social Security Administration informing them that will be eligible for Medicare on a certain date, and that they have approximately 30 days from the date of the letter to let the government know if they plan to accept Medicare, and what parts of Medicare they wish to enroll in.  So, although the Prescription Drug coverage, Part D is the one that confuses people the most, all of the other plans except Part A are still confusing.  Here’s a quick run through of Medicare, and then we will talk primarily about Part D in the next post (more…)