NikoleV

Novartis is having their national oncology meeting in New Orleans January 12 through January 14 and they are looking for a survivor who's had a positive experience on their LDK378 trial to come and share their story. If you've had a positive experience with LDK378 and you're interested please get back to us with your contact info as soon as possible thank you! Please send your email to nventrca@lungevity.org Thanks, Nikole

Novartis is having their national oncology meeting in New Orleans January 12 through January 14 and they are looking for a survivor who's had a positive experience on their LDK378 trial to come and share their story. If you've had a positive experience with LDK378 and you're interested please get back to us with your contact info as soon as possible thank you! Please send your email to nventrca@lungevity.org Thanks, Nikole

We are currently looking for volunteers who want to support others impacted by lung cancer. Survivors, caregivers and families can volunteer to be a support partner and offer 1 on 1 support. Our LifeLine Support Partners volunteer to mentor and offer encouragement, advice, experience and hope to those newly diagnosed and anyone needing additional support through a one-on-one personal connection by email or telephone. LUNGevity’s LifeLine Support Partner program is utilized by dozens of hospitals and many support organizations to ensure that people impacted by lung cancer get the support they need. If you are in a place in your journey where you are ready to mentor others--volunteer to BE a lifeline to someone else today! Looking for one on one support? We can match you with someone that can offer you support, who's walked the same path and understands what you're going through. Find out more at the following link or email me (Nikole) with any questions at nventrca@lungevity.org http://events.lungevity.org/site/PageNa ... eLine.html

We are currently looking for volunteers who want to support others impacted by lung cancer. Survivors, caregivers and families can volunteer to be a support partner and offer 1 on 1 support. Our LifeLine Support Partners volunteer to mentor and offer encouragement, advice, experience and hope to those newly diagnosed and anyone needing additional support through a one-on-one personal connection by email or telephone. LUNGevity’s LifeLine Support Partner program is utilized by dozens of hospitals and many support organizations to ensure that people impacted by lung cancer get the support they need. If you are in a place in your journey where you are ready to mentor others--volunteer to BE a lifeline to someone else today! Looking for one on one support? We can match you with someone that can offer you support, who's walked the same path and understands what you're going through. Find out more at the following link or email me (Nikole) with any questions at nventrca@lungevity.org http://events.lungevity.org/site/PageNa ... eLine.html

Dr. Antoinette Wozniak on Small Cell Lung Cancer: Current Management and Future Directions June 21st, 2013 - by Dr. Jack West http://expertblog.lungevity.org/2013/06 ... irections/ I must apologize for it taking so many months to get the webinar by Dr. Antoinette (Toni) Wozniak, from Wayne State University’s Karmanos Cancer Center in Detroit, on small cell lung cancer (SCLC). There has been so much timely content from the 2012 Lung Cancer Highlights, Santa Monica Targeted Therapies in Lung Cancer Conference, and then ASCO that this never saw the light of day. Let’s rectify that. SCLC has been declining in frequency, now accounting for about 12% of lung cancers in the US, but that’s still about 20-25,000 cases/year, so it definitely deserves our attention. In the first podcast episode listed here, Dr. Wozniak provides general background and introduces the staging system that is closely associated with how we treat SCLC: (Click link above to view the video/audio links) Wozniak Pt 1 SCLC Intro and Staging Video Podcast Wozniak Pt 1 SCLC Intro and Staging Audio Podcast The second part of her presentation covered both current treatments and future directions. Audio and video versions of this podcast are here: Wozniak Pt 2 SCLC Current Treatment and Future Directions Video Podcast Wozniak Pt 2 SCLC Current Treatment and Future Directions Audio Podcast I’ll try to get the figures and transcript added here very soon, but I didn’t want to delay any longer in getting this content out. I hope it’s helpful.

ASCO Update: Is Avastin Critical in First Line Therapy and Maintenance for Advanced NSCLC? June 17th, 2013 - by Dr. Jack West http://expertblog.lungevity.org/2013/06 ... al-zinner/ Here’s another video we filmed at the end of ASCO 2013, in which Dr. Pennell from Cleveland Clinic summarizes the PRONOUNCE trial that compares two different commonly used regimens for first line and maintenance therapy in advanced NSCLC. What did we learn? (Click link above to view the video) ASCO Video: PRONOUNCE Trial of carbo/taxol/avastin –> bev vs. carbo/Alimta–> Alimta

Quick ASCO Summary: Potential New Options for Lung Cancer June 15th, 2013 - by Dr. Jack West http://expertblog.lungevity.org/2013/06 ... ng-cancer/ Continuing with a second part after my summary of new presentations on management options for some of our current tools against lung cancer, today I wanted to briefly cover some of the more promising new agents and approaches emerging in lung cancer at ASCO 2013. Probably the biggest story in lung cancer from last year was the anti-PD1 immunotherapy now called nivolumab, an “immune checkpoint inhibitor” that essentially turns off the brakes of the body’s self-regulation that can keep our immune system from recognizing and fighting cancer cells. PD1, or “programmed death-1″ is a target protein on the T-cells of our own immune system, and PDL1 is the ligand (binding partner) for it, a protein on the tumor cell side. This year, we got an update of nivolumab that essentially corroborated that the preliminary results from last year in some heavily pre-treated patients are still holding up, are durable (1 year or longer) in many of them, and seem to now be about as common in those with an adenocarcinoma or non-squamous NSCLC as in squamous, where it appeared that there may be particular activity. This year, there was also some very early work combining this immunotherapy with nivolumab along with first line doublet chemo, and this work showed that the combination was feasible and had activity that looked like it may exceed what we expect to see from standard chemo alone. More to come on that, but the general momentum is such that the results with these immune-based treatments are promising enough that we should expect to see them not only left as second, third, or fourth line treatments but will soon see them tested more as first line for metastatic NSCLC and potentially soon in earlier stage patients who we’re treating for cures. Another early trial was with an anti-PDL1 agent called MPDL-3280A, which was also just tested in the first few dozen patients with lung cancer and found to have an objective tumor shrinkage rate (objective response) rate of 20-25%, with some of these being quite dramatic and potentially long-lasting — though this work is still too early to say much. However, it’s also important to note that the response rate of 20-25% almost certainly underestimates the benefit of this drug and other immunotherapies because it doesn’t include patients with “pseudo-progression“, a very important phenomenon with some immune-based treatments in which existing lesions may appear to grow and/or new lesions appear, then actually shrink dramatically after a subsequent scan is done if patients continue on this treatment. If biopsied, these lesions may actually show lots of T cells, the immune reaction fighting cells attacking the cancer, which may infiltrate a tumor or even make a tiny one appear as a new lesion (presumed to be the reason why a “new” nodule may appear and then melt away). This is critical to recognize, because oncologists aren’t used to seeing pseudo-progression, but the point is that if patients appear to be doing well clinically, it may be premature to discontinue an immunotherapy just because a new lesion happens to appear or existing lesions may grow — this may just precede a subsequent dramatic response. A couple of trials highlighted some potential new advances in second line treatment for metastatic NSCLC. The first is nindetanib, or BIBF-1120, an oral anti-angiogenic drug that actually inhibits several potentially relevant targets in cancer cells. A global phase III trial (the kind that can lead to a new treatment being approved for commercial use if found to be favorable) randomized about 1300 patients to second line Taxotere (docetaxel) chemotherapy alone to the same chemo with nindetanib and demonstrated a marginally significant improvement in progression-free survival (PFS) overall, but in patients with an adenocarcinoma, there was a much more striking improvement in PFS and overall survival (OS) (more than a 2 month improvement in median OS). The combination in second line was actually especially favorable in the patients with a metastatic lung adenocarcinoma that progressed early on first line doublet chemotherapy. This trial may be sufficient to lead to nindetanib becoming approved by the FDA and commercially available in the next 12 months, at least for patients with a lung adenocarcinoma (less likely to be approved for all metastatic NSCLC). Another second line trial was with the “heat shock protein inhibitor” (or HSP-90) inhibitor ganetestespib, also tested in combination with Taxotere and compared with Taxotere alone, in a randomized phase II trial (which can give a signal of value of the drug but isn’t big enough to confirm it should be approved for commercial use). This trial, called GALAXY-1, initially included patients with squamous as well as non-squamous NSCLC, but there were some safety concerns with the squamous cell NSCLC patients in the early part of the trial, so it continued to enroll only non-squamous patients. It showed an impressive superiority in PFS and OS for the combination in adenocarcinoma patients, and this was particularly true in the subset of patients who were enrolled on the second line trial more than 6 months after their initial diagnosis. This factor likely represents something about a more favorable biology of these cancers. In any event, there is a new, phase III trial moving forward (GALAXY-2) that will do the same randomization of Taxotere with or without ganetespib, only enrolling patients with metastatic non-squamous NSCLC (it may be only lung adenocarcinoma — not sure) who were diagnosed at least 6 months prior to the time of initiating second line treatment. Interestingly, it seems that the nindetanib may be a particularly appealing choice for patients with patients who progress early on first line chemo, while ganetespib may be particularly appealing for those patients who do much better with first line chemo +/- maintenance therapy. The final group of new agents I wanted to touch on is a series of second generation ALK inhibitors that are being tested in the approximately 4% of patients with an ALK rearrangement. While XALKORI (crizotinib) was a major contribution in lung cancer, albeit for a small subgroup, it was only “accidentally” discovered to be effective as an ALK inhibitor while being developed as a MET inhibitor. In contrast, the second generation ALK inhbitors, including one from Novartis called LDK-378, one from Ariad called AP-26113 (which also inhibits EGFR, but not nearly as well as it inhibits ALK), and one from the Japanese company Chugai called CH5424802, all have very impressive activity in ALK-positive patients, with response rates ranging from about 60-94%, seemingly as good in patients who have progressed on XALKORI as in those who are XALKORI-naive, leading to some very long-lasting responses (most still ongoing), and some responses of brain metastases, where XALKORI isn’t effective. These drugs are all in rapidly enrolling clinical trials and hold a great hope as an appealing option for patients who have already received and progressed on XALKORI, or perhaps as a first line treatment alternative to XALKORI. That’s enough for now. I think there’s reason to be hopeful about many of these strategies.

Just Wondering June 21st, 2013 - by Kenneth Lourie http://blog.lungevity.org/2013/06/21/just-wondering/ Having never attended medical school (and not really having had the grades or commitment to do so), and having only completed 10th grade biology and freshman year astronomy, and rarely even driven by a medical school growing up, my understanding and/or instincts regarding how a medical professional plans and/or prepares for his day is as foreign to me as sugar-free chocolate (if I’m going down, I’m going down swinging; in truth however, considering the anti-cancer, alkaline diet I’m following, I do need to swing a little less frequently). Nevertheless, having had multiple appointments with doctors/health care professionals over these last four cancer-centric years, I’ve often wondered how much preparation occurs before each appointment. There’s a schedule certainly, but does the doctor review it daily/weekly – in advance, to determine the course of his possible action/discussion with the patient? And if so, does he review/study/research said patient’s medical chart/history to better prepare for these discussions or does he sort of “wing it,” professionally speaking, and instead wait to hear what the patient has to say? Moreover, if there’s been lab work, diagnostic scans, etc., completed previous to the appointment, does the doctor receive indications – electronic or otherwise, before the appointment, with enough time to evaluate the results/read the reports or does he see it for the first time sometime during the day of the appointment? And while this curiosity exists in my head, is the doctor likewise preoccupied (even a little bit) with my ongoing health situation beyond the 30 minutes or so we spend together every few months or his time too precious, respectfully speaking? I realize he’s busy, but do I rank in his file? And if so, what does he know and when did he know it? Not that I’ve ever felt unknown or disrespected when visiting either my primary care doctor or my oncologist, but I have felt a little distance when I’ve seen specialists: pulmonary, thoracic, nephrology, surgery, to whom I’ve been referred, who previous to seeing me face-to-face had never met and/or spoken to me. Now I never took it personally; I took it professionally, as in: I suppose this is the process. However, how do they know a patient they don’t know, let alone advise with proper consent? Over time though, my thinking has evolved. Now I’m thinking/wondering if they are even supposed to prepare for me – and not by reading my file for the first time when I’m sitting on an examining table directly across from them or through study the night before, but at all? Perhaps my situation – as serious as it is to me, is not as serious to the doctor? And by that I mean, he’s not ruled by his emotions – he’s not terminal, that I know of, anyway. It’s just another day at the office – so to speak. I understand that he likely has many patient histories on his mind/in his head and focusing/preparing too much for one somehow has adverse consequences for the others. Maybe the treatment protocols, as complicated as they are to me, are fairly mundane to the doctor and don’t require that much homework, so discussing my chart as he reads it for that first time is no big/complicated deal and standard operating procedure? I’ve actually experienced this sensation a couple of times with my oncologist. When I was a more frequent visitor to the Infusion Center – every three weeks, occasionally I would see him tending to other patients; he didn’t seem to know I was going to be infused that day (in fairness, the infusion appointment does not directly involve the oncologist), even exhibiting surprise at my presence. Still, I would more often than not ask him a question about my specific health situation. However, if I didn’t have a non-infusion appointment scheduled that day, he wasn’t comfortable answering my questions. He would say: he wasn’t prepared to answer the question. Apparently, he couldn’t pull my information out of thin air. I came to understand and accept that if it wasn’t my day to be examined, it wasn’t a good day to ask him health-related questions about yours truly. Still, I wonder, as much from lack of knowledge as anything: are my expectations unreasonable? I know, in my head anyway, as concerns my cancer treatment, it’s all about me. But what about in my oncologist’s head? Am I on his radar or am I out of sight, out of mind? And if so, is there any harm in that, or is it just me wondering too much about too much (the bane of this cancer patient’s existence)? Heath care professionals chime in. How do you prepare for an office visit with a patient? _____________________________________________________________________________ “This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.” Mr. Lourie’s columns can be found at www.connectionnewspapers.com. (key word, Lourie)

Summer Camps for Kids Impacted by a Cancer Diagnosis June 18th, 2013 - by Katie Brown http://blog.lungevity.org/2013/06/18/su ... diagnosis/ Traditionally “summer camp” is viewed as a carefree, fun and sometimes educational program for kids to take part in during their summer breaks. Lasting a few days to a few weeks, these programs can teach life skills, sportsmanship, and team work, build self-confidence and help form life-long friendships. Many of us utilize summer camps to keep our children physically active and to keep them from being bored out of their minds during the summer. But did you know about the specialty camps available today to help kids who have been impacted by a cancer diagnosis in their family? One in three women and one in two men will be diagnosed with cancer in their lifetimes and cancer affects an entire family. Some of these camps are available at low or no cost and offer an environment of understanding and support for a child and family members who are experiencing tragic or difficult circumstances. A camp like this can offer a child a break from the reality of their current situation, a break from cancer or maybe for the first time be the one place where there are others that truly understand. If you have or know of a child impacted by a loved one’s cancer diagnosis, it’s worth it to check into the availability of camps in your area. I’ve posted some listings of camps below. If you know of others, please feel free to post the links in the comments section. Angel Foundation’s Kid’s Kamp, Minnesota http://www.mnangel.org/attend Facing Cancer Together, a program of Angel Foundation, offers a free camp for children ages five to 18 who have a parent with cancer. Facing Cancer Together offers education and support programs for the whole family throughout the year. Arizona Camp Sunrise and Sidekicks, Arizona http://www.azcampsunrise.org/ Established by the ACS, Arizona Camp Sunrise offers special programs for children who have or have had cancer and Sidekicks, programs for the siblings of children with cancer. Arizona Camp Sunrise offers weeklong, residential summer camps, day camps, weekend retreats, teen trips, and other year-round special events. Camp Kesem, throughout the United States http://campkesem.org/find-a-camp Organized by college students, Camp Kesem is a weeklong, sleep-away summer camp for children ages six to 13 with a parent who has or has had cancer. The camps are held on college campuses throughout the United States. Each of the camps is organized and operated by a group of student leaders. Camp Mak-A-Dream, Montana http://www.campdream.org/ Camp Mak-A-Dream is operated by Children’s Oncology Camp Foundation. It is a medically supervised, cost-free camp for children (ages six to 13), teens (ages 14 to 18), and young adults (ages 19 to 25) with cancer. Camp Mak-A-Dream also offers a camp for siblings ages six to 17 who have a brother or sister with cancer and hosts retreats for adults with cancer each fall. Cancer Services of New Mexico’s Family Cancer Retreats, New Mexico http://www.cancerservicesnm.org/programs/retreat.php Family Cancer Retreat is a free, three-day educational retreat for adults with cancer and their families. The event includes a combination of educational workshops and family activities. The retreat is held twice a year in Glorieta, New Mexico. Harmony Hill, Washington http://www.harmonyhill.org/personal-retreats Harmony Hill, located on the south shore of the Olympic Peninsula’s Hood Canal, offers weekend, residential cancer retreats for people with cancer and their loved ones. The Hole in the Wall Gang, Connecticut http://www.holeinthewallgang.org/Page.aspx?pid=471 The Hole in the Wall Gang is a camp founded by Paul Newman in 1988 that offers summer programs, fall reunions, parent support programs, and other outreach programs. The Hole in the Wall Gang is one camp within the Association of Hole in the Wall Camps. Special Love, Inc., Virginia http://www.speciallove.org/ Special Love provides camps, support networks, and other unique experiences for children with cancer, their siblings, and families. ____________ Originally posted on the EmpowHER Network

ASCO Video: Trial tests predictive value of blood test for EGFR inhibitor therapy June 12th, 2013 - by Dr. Jack West http://expertblog.lungevity.org/2013/06 ... r-therapy/ In this video podcast from our discussion at ASCO 2013, Dr. Nate Pennell from the Cleveland Clinic discusses the key findings from the PROSE trial, a study that looked at whether a blood-based test could help us anticipate which patients are more likely to benefit from an EGFR inhibitor like Tarceva (erlotinib) or chemotherapy as second line treatment for advanced NSCLC. Drs. Mary Pinder and I also join in with our thoughts about the potential implications of this work. (Click link above to view the video) ASCO 2013 video Pennell on PROSE Study of Veristrat test in Advanced NSCLC I hope it’s interesting and helpful.

ASCO Update: Molecular Selection of Chemo for Advanced NSCLC Fails to Deliver June 10th, 2013 - by Dr. Jack West http://expertblog.lungevity.org/2013/06 ... o-deliver/ Dr. Mary Pinder, from Moffitt Cancer Center in Tampa, FL, was one of the investigators very involved in a high profile trial called MADeIT, which directly tested whether we might do better with chemo by selecting a particular regimen for each patient based on molecular markers for the cancer. Here’s her discussion of the trial, along with another from Spain presented at ASCO 2013 that demonstrated no improvement in outcomes with this approach, and the implications of this work for treatment of advanced NSCLC today: (Click link above to view the video) Molecular Selection of Chemo for NSCLC ASCO 2013 Trials Video More to come, including some video summaries that describe more encouraging results! -Dr. West

Quick Highlights from ASCO 2013 in Lung Cancer: How to Best Use Our Current Tools June 9th, 2013 - by Dr. Jack West http://expertblog.lungevity.org/2013/06 ... ent-tools/ I’m just catching up on sleep after ASCO 2013, so now is the time for me to provide a quick mention of some of the key themes and what we’ll be talking about more in upcoming videos, webinars, and posts. The first topic we covered in the recent video from ASCO was “Biomarkers France”, an effort in which a network of centers in France that managed to test 10,000 patients, essentially all of the patients with advanced non-squamous NSCLC, for both the most readily actionable mutations like EGFR and ALK, as well as several that may emerge as actionable in the next few years. This work confirms that it’s possible to do molecular marker testing for lung cancer on a national scale, not just at a few academic centers while excluding patients who are community-based. There was also some work on “multiplex” testing (testing for multiple molecular markers at the same time from one biopsy sample) that should lead us all to expect that it will only get easier to do this testing on many people for all of the relevant markers pretty much now, and certainly more in the very near future. Finally, there was even an encouraging trial, called CUSTOM, looking at the feasibility of doing molecular marker testing on small cell lung cancer and thymic carcinomas, so we may see more molecular marker-based trials and treatments emerging for other less well studied thoracic cancers in the near future as well. There were a couple of high profile tests of various potential molecular markers proposed to help guide selection of an optimal chemotherapy: markers like ERCC1 (suggested to correlate with resistance to platinum-based chemotherapy), RRM1 (potentially correlated with resistance to gemcitabine), and a couple of others that have sometimes even been used to select chemo regimens outside of a protocol (though most experts have advised against this). One was the MADeIT (Molecularly Adapted Design of Individualized Therapy) trial, run largely out of Moffitt Cancer Center in Tampa, and the other was done by the Spanish Lung Cancer Group, out of Barcelona. Both of the studies were stone cold negative, no benefit at all to trying to select a better chemo based on these tests, which turned out to be not very reliable in their readout, which was a known concern about them. These completely negative results, though disappointing, should remind us that tests promising tailored treatment recommendations for chemo, as advertised by several outside labs marketing to consumers, don’t have actual evidence that they help patients do any better. There were a few studies of maintenance therapy for advanced NSCLC. One, called PRONOUNCE, tested carboplatin/Taxol/Avastin first line followed by Avastin maintenance vs. carbo/Alimta first line therapy followed by Alimta maintenance therapy and showed no significant differences in either efficacy or side effects. Though disappointing, it does show that you don’t need Avastin to do well — you could do just as well with a doublet and no Avastin. A second maintenance therapy trial called AVAPERL gave all patients first line cisplatin/Alimta/Avastin and then randomized them to maintenance Avastin alone or Alimta/Avastin. After previously showing a significant improvement in progression-free survival (PFS) favoring the combination maintenance therapy arm, an update showed that there was a 4 month better overall survival (OS) in patients on the Alimta/Avastin combination. It seems the Alimta clearly adds to Avastin, but it’s not clear the Avastin adds to Alimta. There was also a trial called DELTA, done out of Japan, that tested second line Tarceva (erlotinib) vs. standard chemo with Taxotere (docetaxel). It showed a superior PFS for the recipients of Taxotere overall (most patients didn’t have an EGFR mutation), though there was no significant difference in OS. Still, what I think was most notable was that, in the wake of the TAILOR trial presented a year ago that showed a better PFS and also response rate with Taxotere vs. Tarceva in EGFR wild type patients (no EGFR mutation), was that we now have corroborating evidence that in the absence of an EGFR mutation, chemotherapy appears to be a marginally better choice for second line therapy. One heavily anticipated trial is called PROSE and tested a serum-based approach called Veristrat for its predictive value in determining whether Tarceva is likely to be helpful for previously treated patients with advanced NSCLC. The study prospectively looked at patients randomized to receive second line Tarceva or Taxotere and showed that being found to have a “Veristrat Poor” profile (seen in about 1/3 of patients) was associated with doing far worse when patients were given Tarceva, but these patients did the same as the 2/3 of patients who were “Veristrat Good” when they received chemotherapy. In other words, the Veristrat test was predictive of utility only of EGFR-based treatment, not just predictive of a patient doing well or poorly no matter what treatment they received. The problem, however, is that if you have already decided that second line chemo is a better choice for patients with EGFR wild type based on the findings of the TAILOR and DELTA trials, it’s not clear that you gain anything by doing Veristrat testing. Perhaps you use it to decide whether to try Tarceva as third line therapy or never bother with it at all, but it’s an FDA approved therapy, so I think many patients won’t be looking for a trial that can only tell them that they lose one option that they might have been hopeful about. I’ll continue with discussion of the key findings for several novel agents in my next summary post.

Key Research in Lung Cancer, Direct from ASCO 2013: Nation-Wide Molecular Marker Testing June 7th, 2013 - by Dr. Jack West http://expertblog.lungevity.org/2013/06 ... r-testing/ This is the first podcast as part of a video program just done a few days ago at the end of ASCO 2013, the largest cancer conference of the year. I was joined there by Drs. Nate Pennell, lung cancer specialist at the Cleveland Clinic Foundation, as well as Dr. Mary Pinder, from Moffitt Cancer Center. We covered a series of topics over a little more than an hour, and over the next several weeks I’ll be relaying podcast pieces from that event right here, in 3-10 minute pieces. I hope it’s helpful. The first of these covers a presentation on a project called “Biomarkers France”, a nation-wide platform to test for a collection of current and emerging molecular markers in patients with non-small cell lung cancer. Here’s that video: (Click on the link above to view the video) Direct from ASCO Pt 1 Biomarkers France In the next day or two, I’ll also be writing a summary of my general impressions and some highlights from 20,000 feet, which will largely serve as a preview/table of contents for many of the videos you can expect to see here over the next month. Or catch them on YouTube, subscribe on iTunes, etc. We want to make them as accessible as possible for you.

ASCO June 13th, 2013 - by Susan C. Mantel http://blog.lungevity.org/2013/06/13/asco/ Back a few days now from the always intense American Society of Clinical Oncology (ASCO) annual meeting in Chicago, and I’ve been reflecting on the take-aways for lung cancer from all of the presentations, posters and discussions. There weren’t major breakthroughs for lung cancer patients, but there was a lot of energy and forward momentum and I am feeling really positive about how much attention is being paid (finally!) to people with lung cancer. Here are three things that particularly struck me: There was more interest in lung cancer than ever by the attendees. The poster session the first day, where almost 170 different research project results were displayed, was so jam-packed that I could hardly walk through to see all of the information. The oral presentations and the education sessions also had amazing numbers of people listening, learning and engaging—definitely more than I have seen in my previous seven ASCOs. People attending ASCO included scientific researchers and pharmaceutical/biotech/device, etc. companies, but also many, many practicing physicians who are just trying to get better at treating their patients. ASCO seems to be doing an overall better job of providing meaningful sessions for this third group, and the breakthroughs we’ve already seen HAVE to be understood and implemented by all doctors treating lung cancer patients, or we will not see an increase in overall survival of the disease. That brings me to my next take-away. There was a LOT of research information presented on lung cancer. One major area of focus was consolidating the knowledge we have— looking at research from the past several years and anything new, how do we sequence or combine surgery, radiation, chemotherapy, targeted therapies in the most effective way? How do we treat different sub-populations, like the elderly, most effectively. Is there enough research in these areas to make a decision, or do we keep doing more studies? One conclusion relates to the elderly. We know older people can have vastly different states of health and disease, but treating decisions have often been made by age group as a whole. There is now evidence that age is NOT the number to use for deciding to provide certain chemotherapies. Elderly patients have to be fully evaluated on health status too, and, if your doctor isn’t doing this, demand it or change doctors. Another standard of care with tons of evidence to support it, but with uneven implementation around the country—molecular testing of tumors. The other big category is new treatments in early stages of research. Immunotherapy and heat shock protein (HSP) inhibitors were two really interesting areas, but the research is still in its first stages. Therapies for additional targets, like RET, ROS and MET, are also in development, as are second or even third generation targeted therapies to deal with EGFR and ALK inhibitor resistance. Early results are exciting, but the only way we will move forward is through clinical trials. With the really small populations affected (less than 1-2% in some cases), the research community is going to have to change how they offer enrollment and probably exclusion criteria too, or they will never get enough patients involved for us to get answers to these questions. And patients and caregivers are going to have to be really informed going into their appointments. Exciting times in lung cancer, and to keep the momentum going for the best care for people with lung cancer, we all need to get informed, get involved, and stay committed.

How to Help Someone with Lung Cancer June 11th, 2013 - by Katie Brown http://blog.lungevity.org/2013/06/11/ho ... ng-cancer/ I’ve been thinking a lot about Lori Hope lately. In case you didn’t have the pleasure of knowing her IRL or online, here is a link that will give you a little more information about who Lori was. Lori was a lung cancer survivor who defied odds and outlived her prognosis. She was such an inspiration and source of hope to so many people in the cancer community. She was a rare soul. She was a cancer survivor who thought about others. I’ve known my share of cancer survivors who thought only of themselves. She often thought of those newly diagnosed and about their families. She wanted to leave this world a better place than when she was diagnosed and I admired her so much for how huge her heart was. Lori died September 2012 and is very missed by so many. Lori’s book. Help Me Live: 20 Things People With Cancer Want You To Know has been a reference for so many of us who support patients and families. A copy of that book sits on a shelf above my desk. I see it every day when I walk into my office. Today it’s inspired me to write my own list; a list specific to lung cancer. HOW TO HELP SOMEONE WITH LUNG CANCER Life’s financial burdens, family, children, employers and household chores don’t disappear when a lung cancer diagnosis happens. Navigating the medical process and surviving treatments and side effects are added to the mountain of responsibilities a person typically has. These are just 5 simple ways that you can help someone you care about who’s been diagnosed with lung cancer. 1. Don’t ask if they smoked. Instead, show them that you care. Empathy and sympathy comes easier to those who’ve been diagnosed with other types of cancers. With lung cancer there are misconceptions about the disease and who can get it. Some people may believe that lung cancer is solely a preventable disease and don’t know that all you need to get lung cancer are lungs. There may be blame or even guilt associated with a lung cancer diagnosis. While lifestyle can play a part with any health issue, it isn’t your place to assess the cause of their lung cancer or place any blame upon them. When you learn of someone’s lung cancer diagnosis you need to decide whether or not you’re going to be a part of their supporting team. In one interview, Lori Hope mentioned how “OK” it was to say that a person’s diagnosis was “unfair”. Saying a diagnosis is unfair lets the patients know that you care; you understand that it could happen to anyone and that there is no blame placed upon the patient for their diagnosis. 2. Listen. Listen to the patient. Some patients are blessed with family members and friends who will become caregivers and can support them throughout their lung cancer experience. Everyone wants to help and sometimes the wishes of the patient and even how they are feeling emotionally about their health and future can get lost in the day to day responsibilities. Don’t forget to include the patient in every aspect of decision making unless they defer all responsibility of that task to a specific person. Don’t forget to ask how the patient is doing and listen to the patient talk about how they are feeling about their situation. It’s ok not to know what to say or not have any answers. Just listen. Listen for the patient. Doctors’ appointments, treatments, procedures and life changes are overwhelming. It can be difficult emotionally to process all the things coming at you. Ask the patient to designate a healthcare advocate or “listener”. This person will go to doctor’s appointments, writes down questions and answers and records side effects and anything else the patient is experiencing and act as a liaison between the patient and their doctors. 3. Share hopeful stories and experiences. Don’t talk about how you lost someone to cancer to someone who’s just been diagnosed with it. The idea is to inspire and offer encouragement, not instill fear or dread or even false hope. If you don’t have any real positive stories of people surviving cancer, find some survivor stories to share and talk about everything else. Your conversations needn’t revolve around cancer all of the time. 4. Don’t ask. DO. “Let me know if I can help.” You’ve probably said these words many times in your lifetime in many different circumstances. Did you mean it then? Do you mean it now? There are so many things people can do to help, but the patient and their family will rarely ask for help. And saying those words simply puts the onus back onto the patient and off your shoulders. Actions speak louder than words. Set up a meal train or a chore chart among family and friends. Schedule a specific task and do it. Then do it again or do something else but keep helping as often as you can. A person diagnosed with lung cancer can use all the support and help you have to offer for the duration of their treatments and recovery. You’d want people to do the same for you. 5. Seek outside support. If you don’t have time to spare to take on responsibilities and physically help the patient, there are still ways you can help. You can research to find outside resources to help support the patient and their family. You can find volunteer organizations who offer rides to treatments, you can contact churches and groups to mow lawns and do light housekeeping and deliver meals. You can even find cancer support groups and mentors/support buddies for the patient. Ask them what their needs are and work to help fulfill them. You can find a listing of resources on the LUNGevity Caregiver Resource Center.

E-Male June 10th, 2013 - by Kenneth Lourie http://blog.lungevity.org/2013/06/10/e-male/ My oncologist is a man. He has e-mail. He works for an HMO that encourages/advertises its connectivity and responsiveness – electronically, to its members. If I want to get medical answers in a reasonable amount of time – save for an emergency, typing, “mousing” and clicking is the recommended methodology. No more phone calls, preferably. Though pressing keys on a keyboard rather than pressing buttons on a phone might have felt counter-intuitive at first as a means of receiving prompt replies, it has proven over these past few years to be a fairly reliable and predictable information loop. Not in minutes necessarily, but more often than not during the same day – and almost always by the very next day. In fact, I’ve received e-mails from my oncologist as late as 9:18 p.m. (time-stamped) after a sometime-during-the-day e-mail had been sent. The content of the sent e-mail has almost always been helpful or constructive, even instructive concerning the issue at hand. I’ve never felt disconnected, though; alone maybe, but that’s more because, other than our three cats, there is rarely anyone else at home with me. Being a salesman can sometimes be a solitary pursuit. And though there are many advantages – freedom and independence being the two most important, occasionally you find yourself alone with your thoughts, literally. Attempting to speak directly with my oncologist during the day – at my convenience, given the too-numerous-to-list responsibilities of his non-stop, double-booked routine, seems a bit unrealistic. And if there’s anything I’ve learned during this cancer experience, it would be to minimize/manage my expectations in a way – any way, to avoid any totally understandable but fairly unhelpful jumps to discouraging conclusions. Patience can be a virtue, although being one of many, less so. And though I consider myself an important patient (I would imagine most “terminal” patients would characterize themselves as such) and thus deserving/expecting exceedingly prompt and predictable feedback, the reality appears to be somewhat less Kenny-centric. Not that I need constant care (I don’t, thank God!) or reassurance for that matter; however, when your oncologist shortens up your life expectancy by say, 30 years, you kind of think/feel that you’ve risen to the top of his to-do list. Which I certainly don’t know that he has/keeps. If he did/does, perhaps my placement on it would warrant a more immediate reply, electronic or otherwise. Nevertheless, my diagnosis-to-date sense has been that though I am likely on a list, there are probably other equally less fortunate people who have become listed as well. All of whom feel as I do: that they’re the most important name on that list – real or imagined. Apparently, for the medical system’s exchange of information and for the treatment of patients to sync, e-mail has to suffice. And though it may have taken me a little while to sync up, I am now a regular e-mailer to my doctor and an equally regular receiver of his electronic expertise. It’s not perfect, but four years into it, I feel fortunate to have the access that I do. It’s not exactly any port in a storm, but the weather has been inclement and having lines of communication available to me 24/7 has smoothed out many rough patches. How does your medical team communicate with you? What are the things you’d change if you could? ______________________________________________________________________________________ “This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.” Mr. Lourie’s columns can be found at www.connectionnewspapers.com. (key word, Lourie)

Words of Hope and Strength Do Not Cure Cancer June 5th, 2013 - by Katie Brown http://lungevity.org/support-survivorship/get-connected/blog/words-of-hope-and-strength-do-not-cure-lung-cancer WORDS OF HOPE AND STRENGTH I love to communicate with different and interesting words. I think words are delicious and I think the right words can inspire others, especially over the internet. Some people may blame my love of words and catchy phrases on my past pee-wee cheer-leading experience (an elementary version of “Bring it On!”) or the fact that I was a reporter for my college paper (yes it was actual newsprint back then) or maybe it’s because I’m a mom to two really clever kids, who teach me new words and phrases everyday. For whatever reasons, I love words. I also love to make up words. Making up words and phrases is my thing. When I’m having a bad day, things are “craptastic”. When something I’m counting on falls through, that’s a “poop-thing” to happen. When I’m having a great day things are “awe-MAZING” or “beautimous” and when I’m describing our annual HOPE Summit , it’s “HOPEtacular.” I know it’s not the most professional language to use, but the patients and families I support see enough professionals on a daily basis. By the time they get to me, they are looking for patient navigation, emotional and practical support, a one on one real time connection, and hopefully at the very least, a smile. Those are things I can deliver on. CRITICS AND PESSIMISTS Recently I was cautioned by a fellow survivor over the use of some of my descriptive words. Survivor. Strength. Hope. Warrior. I’ve read the handful of articles over the years who have said that words of “hope” and “strength” and “survivorship” don’t cure cancer and are just an added pressure placed onto patients. They want people like me to “get real” and not offer false hope. I can truthfully say I’m the first person to “be” real and not offer false hope. I’ve held the hands of each of my parents as they took their last breaths and I’ve lost countless to lung cancer in my 11 years as a patient advocate in the lung cancer community. That’s as “real” as it gets, folks. While I realize the seriousness of what people impacted by lung cancer go through, as a cancer survivor myself I also believe that every day should be celebrated in some way. Words like hope and strength, courage and fighter have been used to describe people impacted by cancer long before I ever became a patient advocate. The difference is I use these kinds of words to describe and inspire those with lung cancer. HOPE IN RESEARCH Historically, a lung cancer diagnosis was never thought of as “hopeful”. It has been described as a death sentence. There were rarely any “survivors” and the word “strong” wasn’t used to describe someone who had been diagnosed with the deadliest cancer killer and going through extremely harsh treatments. While lung cancer still claims the lives of more people than any other cancer and still receives the least in funding dollars, there has been marked progress in the 11 years since my dad was diagnosed. The science is very encouraging and LUNGevity, the largest lung cancer nonprofit, funds more lung cancer research than anyone else. I’m seeing more people live longer with lung cancer and live with it as a chronic disease. I see an integrative and interactive medical community and collaborative treatment team. I see young researchers excited and interested in making an impact against this disease. I see a better quality of life for people diagnosed with lung cancer, clinical trials and many more treatment options today than 10 years ago. We have a very long way to go in our pursuit of making lung cancer a survivable disease at all stages of diagnosis, but there has been progress. SURVIVORS DO EXIST Patients feel stronger. They feel hopeful. I’m meeting more and more multi-year survivors. Through events like the HOPE Summit they feel empowered to make their survivorship the best it can be- whether that survivorship is just months long or many years long. And that IS hopeful. I don’t mean to negate the gravity of a lung cancer diagnosis when I use the word “hope”. I don’t ever mean to imply a positive attitude and some crafty words is all anyone needs to survive this disease. What I do mean to do is inspire and encourage people with my words. I use the stories of survivors to inspire people who are newly diagnosed so that they don’t feel isolated or alone. When I see a photo of a stage 4 survivor in active treatment, who has a multitude of side effects, walk on a treadmill or complete a cancer walk, the words I use to describe that patient are COURAGEOUS and LUNGevity STRONG. No. No amount of cheerleading and none of these clever words or descriptions will cure lung cancer. But let me tell you what it can do. Words can make you laugh or smile. They can inspire someone on the brink of despair. Words can refill lost hopefulness. They can offer emotional support to someone who otherwise may have no one. Words can educate someone enough to get a second opinion, to ask questions, speak to their doctors and empower them to advocate for themselves and improve their quality of life. I think that’s HOPETASTIC.

Tips for Lung Cancer Caregivers June 4th, 2013 - by Katie Brown http://blog.lungevity.org/2013/06/04/ti ... aregivers/ Being a lung cancer caregiver is both a rewarding and challenging experience. Families and loved ones of lung cancer patients take on many roles during the lung cancer journey. It helps to know what to expect, where to find answers to questions and how to ask for help and get support. For new caregivers, there are three essential principals that I’d like to focus on; getting educated, getting support and becoming an advocate. Here are some practical tips that may help those who have willingly accepted this role for a loved one diagnosed with lung cancer. Get Informed and Organized. Get educated. Learn about your loved one diagnosis. It’s important to understand the type and stage of lung cancer, whether or not there is any metastasis (cancer that has moved outside of the primary location) and what treatment options are available to pursue. Getting informed and becoming educated about lung cancer and your specific experience is an ongoing process. There are many ways you can get informed and learn about lung cancer. • Talk to the doctor At diagnosis there will be forms, printouts, folders, booklets or CDs explaining what cancer is and the different types of treatments. Read them, jot down questions and meet with the treating doctor/facility to ask them to explain what you are reading and how it applies to you. With the patient, keep a log, journal or list of questions for the doctor that you can ask at every appointment. • Research online There is a vast amount of information online about cancer and lung cancer and all the different treatments, procedures and medications. Be very cautious about which website you peruse and only visit credible websites. You may visit LUNGevity’s Caregiver Resource Center to access the many resources we have available for people impacted by lung cancer who have been properly vetted. You can also submit questions to our Ask the Experts. Get Support. Ask for help. Caregivers willingly and selflessly devote their time to care for their loved ones battling lung cancer, while oftentimes neglecting themselves in the process. It is important to remember that there are resources available to help lung cancer patients and to help caregivers be the best they can be. One of the biggest challenges in asking for help is taking that first step. Given everything else you are focused on while caring for your loved one, asking others for help can take some of the pressure off of to do everything ourselves. • Asking for and arranging for help Reach out to family members, friends, neighbors, co-workers, clubs and churches. These are the people who care the most about the patient and they WANT to help. You can also visit LUNGevity’s Caregiver Resource Center for resources on organizations that help you schedule or arrange chores and helping opportunities for volunteers, lists of in person lung cancer support groups and ways to find other resources that help with day to day caregiving responsibilities. Some patients find hope and meaning in being a part of a support network or being mentored by a survivor. • Seeking out support for yourself It helps to know there are other caregivers experience the same things that you are experiencing. Talk to other caregivers, seek their advice and learn from their experiences. You can access LUNGevity’s free LifeLine Support Partner Program to be matched with another caregiver who can mentor you and offer you support, you can participate on an online message board and always accept help for yourself from family and friends who care about you! Become an advocate. Becoming a patient advocate takes time. You need to be well informed about the patient and their disease. You will need to become comfortable in asking questions and seeking out answers. You will need to form a working partnership with the treating medical team. You also need to be an advocate for yourself, your personal needs and what you are going through during this time. • Advocate for the patient The healthcare advocate can be the primary caregiver or a third-party who will advocate for the patient, with their permission. They will be at doctor’s appointments, write down notes, asks questions, relays information on side effects and the patient’s general well-being and keeps accurate health records. Having a healthcare advocate lessons the chance that things will be lost in the “process” of the medical system, side effects aren’t ignored and information is relayed about the patient properly. • Advocate for personal time If possible, take time away from caregiving and away from lung cancer. This may be in 5 minute increments, a single morning or an entire day off with the help of family and friends. Research shows that taking this personal time is important, as it allows caregivers to relieve stress and ultimately be a better caregiver. Remember that your health is as important as that of your patient’s health, and avoiding the signs of caregiver fatigue can be detrimental to both you and your loved one. Caregiver fatigue is very real. Lastly, it does help to know you aren’t alone and that resources are available to help you help the one you love.

Father’s Day June 4th, 2013 - by Randall Broad http://blog.lungevity.org/2013/06/04/fathers-day/ As June rolls around again this year, I can’t help but be reminded of Father’s Day, especially since we’re bombarded with reminder Tweets, Facebook ads, and of course men’s apparel offerings across the networks. But I’m not going to go off on a tangent on the commercialism of the day; rather, this year I’m starting to realize just how significant Father’s Day is for me. I consider my role as a father to be one of my greatest accomplishments and one that continues to bring me joy and purpose. This year, I finally understand just how extraordinary the gift being a dad truly is. For the record, my first several years of fatherhood, I paid little attention to the celebration. As one who was flying through life at the speed of sound, most were a blur on the side of the road from the fast lane. In fact during this time, most were plain and simply taken for granted. They seemed at the time a mere reason to have a party, buy gifts, get a card, or simply acknowledge the obvious with little significance nor meaning behind it. I was busy with whatever else to stop long enough to take much notice. I can’t tell you where this malaise for the date stemmed or how it seemed less important. But for more than a decade of being “Dad,” little acceptance was put forth surrounding the Sunday in June directed towards my responsibility and me. Oddly, acknowledging my own Dad’s special day always had meaning. I vividly recall one summer when I was seven. We had moved from Seattle to Florida a couple years earlier; my dad had been transferred to Cape Canaveral for an aerospace job. This year however, my mom, sister and I had flown back to Seattle to spend the better part of the summer with my grandparents, thus missing Father’s Day (as well as his birthday). My Dad remained behind to do what dad did and that was providing for his family. On the flight back to Florida I was so excited I could barely contain myself. Mom informed my sister and I we would be celebrating Dad’s day when we arrived. She needn’t remind nor advise, as we were primed to share our love and appreciation. This had been my first and longest time apart from him since birth. During the flight, two flight attendants could tell I was wound tight and took me under their wing. They made sure I was well attended to throughout our cross-country trip and saw to it that I had plenty to eat, drink, comic books, and toys to keep me occupied. As we were preparing to depart our four-prop DC 6, one reached in her pocket and pinned a set of United Airlines wings on my lapel. A real honor was bestowed upon me and I felt extra special. Back then, the only way off a commercial plane was down a wheeled roll away ramp. As I stepped onto the first step and felt the humidity of the Florida night, my eyes locked on my smiling dad stationed below. He in his customary white collared short sleeve shirt, dark rimmed glasses, and black narrow tie, stood like a pillar on the tarmac awaiting my descent. The level of emotion that filled me in that moment can only be described as ginormous. A feeling so strong, my eyes swelled with tears of such joy and happiness, it caught me off guard. I was way too old and a man for heavens sake, how dare I show this weak and fettered side of me. But there was no holding back the onslaught of emotion, which carried me down those steps. I had to find cover and it better be quick. My winged pin, yes, the cruel pin, it clearly had inflicted pain and harm as it poked me while making my way towards my fathers embrace. My dad wrapped his arms around me, hugged me deeply and absorbed my wailing excuse. To this day, I don’t know if he saw through my feeble and made up tale or not. Looking back, I guess it doesn’t really matter. All I know is I was above and beyond happy to be back in his presence and know he was my dad and he was there; strong and present. Something every child cherishes and deserves. I’m still challenged to understand the difference between my acceptances of my early Father’s Day celebrations versus honoring my dad’s. I guess it boils down to being easier to give than to receive. Perhaps it’s being on the other side of the relationship. But I am now certain of one thing, and that is the day carries far deeper meaning for me than in the beginning years of parenthood. Today, I’m on par with my dear old dad for I can receive on equal footing. What caused this transformation? The second I heard, “You have cancer.” In that instant, the thoughts entering my mind went straight to my two kids. What would life be in a world without their father? How will they survive and feel the safety nets only a father can and will provide? What vacuum will they feel? All painful emotions and in that moment, although not cognizant, the subconscious underpinning I felt stirred from memories outlined, came pouring through every ounce of me. My cancer diagnosis transformed my view of myself as a father and the perception of such dramatically. I couldn’t comprehend nor imagine at my kid’s age a world without a dad. It was unfathomable. I’m now five years enlightened and Father’s Day has finally sunk in. It’s as if a light appeared in a dimmed room and the day took on new meaning and importance. Most of all I’ve gained perspective on the importance of being a dad. For now I see its purpose far more clearly and appreciate the honor. It’s now on my list of special days and awarded to someone at least fifty percent responsible for bringing others into the world. I like to think of it as the gift that keeps on giving as I’ve been extremely blessed with two wonderful contributions to mankind. They are as good as they can possibly be and I’ll leave it there. Looking back on my prior life, I didn’t give much credence to dates and milestones in general. It took my cancer diagnosis to open my eyes to such. I’m now grateful for my new one and I’d be remiss if I stated celebrating the day where I’m acknowledged for being a dad was just another day. It’s not. It’s taken on complete and absolute meaning. A day I cherish and am eternally grateful to experience again and again for however many more I’m given the opportunity to share. Live life as if you have cancer. And have a…Happy Fathers Day!

Not My Mom May 22nd, 2013 - by admin http://blog.lungevity.org/2013/05/22/not-my-mom/ Janet Hollands was originally diagnosed with lung cancer of two etiologies in August of 2011. She had a lobectomy, stereotactic radiation and chemotherapy. At that time her 15 yr old daughter wrote a poem about cancer that was published in her school journal. This March, Janet was once again diagnosed with two “nodules” in her right lung. When she told her daughter, now 16, she wrote the poem below. Janet says her daughter Bailey is her inspiration to beat lung cancer, as many times as she has to. Both Janet and Bailey have agreed to share this poem with our readers. Cancer The word struck me with an unknown fear Cancer Why did my mom get diagnosed with this? I don’t ever want to have to give her that one last hug or kiss Cancer The doctors said it with such casualty Like “oh this may just hurt badly” Looks around the room, what’s this mean? My sister hugged me and tears came to my eyes I stayed as strong as I could Only letting out silent cries Cancer How to react? Nobody knows It’ll be okay, that’s what everyone hopes After all what are people supposed to say about a nice lady, a savior in scrubs That now has a thousand doctors, and only gets paid in hugs Cancer She fought it long, and she fought hard Cancer left, but left her scarred Everyone was all smiles She had been on the cancer free road for miles and miles Until she wasn’t Cancer It came back with no invitation, no warning Unexpected and unwanted She sat me on the couch with a look I hadn’t ever seen The doctors say its back, you see? I’m not cancer free anymore, so it seems She promises she’ll be there through it all I believe her, she’ll be the one who does my hair at prom She’ll be at my graduation, my wedding, she’ll be at it all Cancer Not even that could bring her down Not my Mom. Not, Cancer by Bailey Davis age 16

Definition of Slippery Slope May 22nd, 2013 - by Kenneth Lourie http://blog.lungevity.org/2013/05/22/de ... ery-slope/ Figuratively speaking, of course. That definition being: a late stage cancer patient/survivor previously characterized as “terminal” awaiting the results of their most recent diagnostic scan. A scan that will indicate whether the tumors have grown, moved or God forbid, appeared somewhere new. If your life hung in the balance before the scan, waiting for results of this however-many-months-interval-scan will most assuredly loosen your figurative grip on your equilibrium and your most literal grip on your sanity. This is a domain, unlike the one referred to in one of the more infamous Seinfeld episodes, that one cannot master. To invoke and slightly rework Dan Patrick’s “catch” phrase: You can’t stop it, you can only hope to contain it. Unfortunately, for many of us cancer patients, cancer is the big dog, and if it wants to get off the porch, it will. Our staying put on the porch, however, won’t likely protect those of us inflicted with this most insidious disease. In fact, standing pat – on or off the porch, isn’t likely to have much effect, either. In many cases (make that individuals) cancer is in control. In the medical profession, as much as it has researched and studied, and as many dollars as it has committed in the pursuit of eradicating cancer, the reality is there is much work yet to be done. Though many improvements in diagnosis and treatment have occurred, thereby lengthening life expectancies (I’m living proof of that); still, in many (make that most, let’s be honest) instances, “cancer” is the last word anyone wants to hear associated with whatever symptoms manifested themselves that led to their seeking a medical evaluation in the first place. I wouldn’t say that a terminal patient’s day-to-day existence is chaotic, but neither would I characterize it as the most predictable set of circumstances. I imagine it’s a bit like living in the wild, where you have to live by your wits and trust your instincts. Moreover, I don’t know of any Living with Cancer for Dummies-type book full of wit and wisdom that exists for the newly diagnosed cancer patient. Being there – diagnosed and treated for cancer previously – and currently, and having already done that (lived/evolved with a terminal prognosis), certainly helps moving forward, but it’s hardly a desirable location and certainly not a cure-all (I wouldn’t mind if it were a cure-this-one, though). However, given the choices, I’d rather have the experience (meaning I’ve survived) than not (the definition of DUH). Avoiding it altogether is the goal. However, as this lifelong non-smoker with no immediate family history of cancer can attest: that is much easier written than realized. But as you regular readers know, I don’t complain. It’s a miracle/amazing/extremely fortunate/inexplicable almost, that I am still sitting here – upright and fairly productive, four years into a “13-month to two-year prognosis.” I wouldn’t describe my diagnosis-to-date, Kenny-with-cancer life as having been a walk in the park; more like a series of mini challenges, akin to crossing a stream dotted with stepping stones. Still, it is life, and I am living it, and I’m certainly not going to let a few stones – figuratively or literally, get in my way. Cancer be damned. What keeps you from sliding down the slippery slope emotionally? Share your tips, comment below. _______________________________________________ “This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.” Mr. Lourie’s columns can be found at www.connectionnewspapers.com. (key word, Lourie)

A Boulder of Hope May 13th, 2013 by Anne Gallagher http://blog.lungevity.org/2013/05/13/a-boulder-of-hope/ I recently returned from LUNGevity’s 3rd annual Hope Summit. It was a truly powerful experience and I find it difficult to express how much this event means to me. I spent a few days in Washington DC afterwards and visited the Martin Luther King Jr. Memorial. Imprinted on the side of his statue is the saying, “Out of a mountain of despair, a stone of hope.” I feel like this sums up Hope Summit however I might call it a boulder instead of a stone. All of the attendees who go to Hope Summit have been through so much and there is a depth of experience in that room that is felt very deeply. I attended the HOPE Summit for the fist time last year and that was my first opportunity to sit and talk to survivors like myself. This year it felt like reconnecting with family and meeting some new family members. This year’s event left me with the courage and hope to face another year. HOPE Summit was an emotional weekend that leaves me filled with a fire to continue fearlessly. I really wish that the rest of the world could look into this room and see that there are lung cancer survivors who are not only surviving but they are thriving. It is a room of inspiration and most importantly hope. As a patient navigator I always encourage patients to find a support community and I would highly recommend this event to any of them. I know that many of the patients I see would greatly benefit from this event. Hearing the stories of the others in the room and seeing so many advanced stage patients who are years out from diagnosis is truly remarkable. Not only does this event provide a support community but it provides patients with practical knowledge. There are speakers who talk about pulmonary rehab and breathing techniques, nutrition, exercise, advocacy, communication, surviving with disease, research, and managing side effects. It arms patients with tools to go home and be able to manage their disease and lives better. There was a welcome reception on Friday evening and within moments the room was abuzz with conversation. People from all of the country sharing their unique experiences which are also so similar. Everyone has their own story to tell but many of the experiences are the same and most importantly the feeling is the same. Everyone in that room understands how scary it is to hear that you have lung cancer and there is an instant connection between survivors and caregivers alike. The staff of Lungevity is around and it is easy to tell that their hearts and minds are in the right place. They are focused on survivors, hope, and research. It was a weekend of hugs, support, strength, education and hope. It was difficult to say goodbye but when I did and I said to so many, “See you next year”, I was able to mean it. This event gives me the hope to believe that that will happen! For more information on LUNGevity’s HOPE Summit, please visit www.LUNGevity.org/hopesummit

Looking Forward to Next Year May 13th, 2013 by Randall Broad http://blog.lungevity.org/2013/05/13/lo ... next-year/ This past weekend I had the privilege to attend the third annual LUNGevity Hope Summit (HS) in Washington DC. For those unfamiliar with the event, this is where LUNGevity hosts a two-day (plus an opening evening mixer) for 120 of your closest lung cancer (LC) friends and colleagues. Being my second HS, that makes me HS alum. A chevron I wear proudly on my lapel (or anywhere else it may attach). Last year being my (and approximately fifty others) first, I was pleasantly surprised to see our numbers at this event double in size. I realize this sounds off to say I’m glad to see we doubled in size seeing as to grow this number requires association to either having or caring for LC; a gift you wouldn’t subject your deepest darkest enemy to. What I mean to say here is IF you have LC and/or care for someone afflicted with LC and are capable of flying to DC for a weekend, a better and more enlightened group of individuals you will most likely never encounter. I’ve had a few days to reflect upon the experience from this year before submitting my thoughts this go around. Having done so and let ‘Hugs for Lungs’ moment’s sink in, I am now in a better position to provide first hand input from the experience. For me, it was wonderful to see many of last year’s attendees. Honestly speaking, this was my shining highlight of this year’s event. For the newbies (as Katie the amazing Brown so affectionately refers to the first time Summiter’s), there is much emotion behind this aspect of evaluation as there were several of last year attendee’s not in attendance this go around. Not because they didn’t raise the necessary travel funds, couldn’t afford the trip, or were busy doing something else. They were not with us because they are no longer with us. The cold hard reality many of us face on a day-to-day basis living with the disease. When Andrea shared this aspect in her opening remarks and was overcome with emotion, I know I speak for the other alum’s, we were right there with her. I will forego and spare the reader a detailed and formal evaluation of the Summit as we were all given the opportunity to provide this onsite. Doing so would prove redundant and immaterial. That said, I do want to draw attention to a piece of the program that I for one found to be extremely informative, worthwhile and most of all, enlightening. I’m referring to the second day morning presentation with David Carbone, MD PhD. Carbone proved once more how much of a comedian God can be. After all, here’s a guy who dedicates his entire life and being to dealing with and treating LC only to become a fellow recipient of a cancer diagnosis. As if he is so empathetic towards his patients he contracts the disease by osmosis. And then God has the audacity to have him not only experience the very treatment he prescribes but keeps him alive long enough to empathize, continue to treat and research and gifted enough to share the experience. I’m literally rolling in the aisles on this one…Oh my, God you should be doing stand-up! I must say, when the good doctor shared the gory details of his treatment, I could have probably done without the depth therein. After all, most of us in the room have lived that horror and the not so gentle reminder of the garden hose sticking out of my side draining pink lung-aide into the silver trough below my wheeled and propped up hospital bed (I’ve done my fair share of meditation to let go of that one). The depth of description however did ensure his attentive audience knew full well this doctor is different because he has literally walked the cancer walk. A two-step I believe few practicing oncologists neither knows nor cares to know the actual steps to. Doctor Carbone leads the orchestra on this one and the lung cancer world is better off having the baton in his all too knowing and capable hand. This is such a special gift that has been bestowed upon Carbone it’s hard to fathom. To know what he knows through his years of studying and learning along with what the LC patient knows from personal experience is not to be taken lightly. This combined with the ability to continue to work in the very field is extraordinary to say the least. And to continue to get up every morning, pull his pants on a leg at a time and work in this field is nothing short of amazing and a demonstration of fortitude and dedication. I for one am a fan and could have listened to him present both sides of the equation for the better part of the entire day. The question and answer period would most certainly still be active if we continued in the same room. Without a doubt, the number one take-away for me was not centered on the topics of EGFR mutations, ALK, clinical trials, types of disease, etc. No, for me, the biggy was him sharing snorkeling off the Great Barrier Reef, his family, his personal photos, and his living life. This is the clarion bell ALL LC patient’s share and knows the precious truth that life is short and if given a second chance, you take it. Pure and simple and this aspect of his presentation put it all into perspective. I absolutely loved it! And to know that he’s on the LUNGevity Scientific Advisory Board once more puts feathers in their cap and arrows in their proverbial quiver. I don’t know why I continue to be surprised by such uncovering’s around this organization, but I do. LUNGevity is so buttoned down you need four thumbs and an equal number of index fingers to take off the gown. In closing, to say it was an uplifting and memorable weekend goes without saying. What I will say however is what occurred on the flight home Sunday night; I was seated in an exit row on the aisle of a completely full Boeing 737. I put on my headphones and cranked up my iTunes to full force and played every rock till you drop song I could find. In the process, I guess I got a little carried away as people in front and side kept giving me a look. Four songs in, the guy two seats over reached across my neighbor and tapped my shoulder politely with a smile and said, ‘I promise not sing to you if you promise not sing to me.’ He was even wearing headphones…I guess I was a bit jazzed from the weekend. I look forward to seeing everyone next year and sing you a song as well. For more information on LUNGevity’s HOPE Summit visit www.LUNGevity.org/hopesummit

Selfless or Selfish May 1st, 2013 - by Kenneth Lourie http://blog.lungevity.org/2013/05/01/se ... r-selfish/ Just in case anybody is paying attention, and my behavior plays some kind of role/has any effect on my outcome whatsoever, I’d just as soon be one more than the other. However, receiving a terminal cancer diagnosis (stage IV and let me remind you there’s no stage V) out of the blue at age 54 and a half, less than three months after burying your widowed mother, tends to upset this delicate balance. If I’ve heard it once – since my diagnosis – I’ve heard it multiple times, and from trusted, respected sources: “It’s all about you, Ken.” And when the oncology nurse sticks that needle in your arm for the first time and then hooks you up to a six-hour I.V. drip containing chemotherapy drugs “cocktailed” to poison you (kill your tumor-carrying white blood cells actually), the decision about whom to care about most, you or someone else, begins to take on a life of its own. Controlling that other life has become one of my biggest challenges. It’s very easy to lose yourself in the midst of a metastatic malignancy when your oncologist gives you “13 months to two years” to live. For all anybody knows, it’s your attitude or even your personality that keeps you alive as your treatment ramps up. However, thinking and doing for others is extremely difficult at this time, a time when you can barely get out of bed. Chemotherapy has a way of leveling the playing field: You can’t do anything for anybody, least of all for yourself. As you begin to bounce back after your treatment (if there is an interval), you semi-regain your composure in anticipation and preparation for the next infusion. Nevertheless, before too long, the mental demons begin to take hold yet again, attempting to tear down every emotional underpinning you’ve devised. No one said it was going to be easy. In fact, one of our best friends, Lynne, a recent breast cancer survivor said quite the opposite: “Ken, this is going to be the hardest thing you’ve done.” Of course, she was 100 percent correct. Over time and over treatment, you begin to assimilate the demands: the infusions, the frequency, the doctors’ appointments, the diagnostic scans, the lab work, the side effects, the straight-on effects, the highs, the lows, the hopes, the prayers, the statistics; until it becomes, at least for me it has, sort of mundane and part of a process that takes over your life – for some very unfortunate reasons. You accept it because: it appears there are very few exceptions. Cancer rules and thinking it doesn’t is disrespectful almost and incredibly naive. Giving respect to such a dreaded – but previous to my diagnosis, not a part of my family’s history – disease, helped guide me back to becoming more selfless and less selfish; understanding that reclaiming that dignity and integrity in this context anyway, can have a powerful effect on both myself and those around me, which in turn works back to me (the old what goes around comes around-type karma) and ultimately benefits and enhances my life. The longer I’ve survived with this diagnosis, the more characteristic of the pre-Kenny-with-cancer I’ve become. That’s not to say that I don’t occasionally slip and fall – emotionally, but now, getting up is not nearly so difficult. I’ve been there, and I’ve done that. Besides, I’m happier being me, and happiness can work miracles. For those living with cancer, how do you balance taking care of yourself and being there for others? ____________________________________________________________________________________ “This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.” Mr. Lourie’s columns can be found at www.connectionnewspapers.com. (key word, Lourie)

Writing What Four April 22nd, 2013 - by Kenneth Lourie http://blog.lungevity.org/2013/04/22/writing-what-four/ As far as anniversaries go–and I hope this one “goes” a lot further; acknowledging, dare I say celebrating my four-year survival anniversary from “terminal” stage IV (inoperable, metastasized) non-small cell lung cancer, a diagnosis I initially received on Feb. 27, 2009, along with a “13-month to two-year prognosis” from my oncologist, is certainly column-worthy. Not that I haven’t mined these emotional depths before–end of years one, two and three if truth be told, but I’m sure I can be given a pass, given the subject matter. And what matters more than a characterized-as-terminal cancer patient outliving his prognosis by years? Not too much, from my perspective. Quite frankly, this is the content of a column I can get used to writing repeatedly, if need be, and I’m hoping the need be. Oh, I don’t suppose I’ll be recycling material from previous anniversary columns, even though the sentiment would be familiar: amazing good fortune, gratitude, anxiety concerning an unpredictable future, etc. Nevertheless, I’ll risk expressing some feelings here that might be somewhat reminiscent of columns and anniversaries gone by. Being diagnosed with lung cancer two and a half months after my widowed mother succumbed to her old age–thereby making my brother Richard and I orphans, as it were (my father had died two years earlier, almost to the day of my mother’s passing)–seemed a bit unfair, especially considering how much my brother and I had sacrificed as we cared and concerned ourselves with the last years of our parents’ less-than-ideal lives. But “fair” has never really entered into my equation. That’s not how I look at things. I look at things the way I’ve heard (on sports talk radio, anyway) how football players describe their attitude toward a starting player being injured: “Next man up.” There are no excuses. It’s not exactly poker, but you play the cards you’ve been dealt. And so, in my four years of living with cancer since February, 2009, I have not pursued justice, nor have I declared my independence, but I have tried to live my life with good humor–and liberty and happiness when I could manage it. Not always have I achieved these goals or maintained the balance necessary to counter the emotional weight and physical toll receiving a terminal diagnosis–and the treatment protocol–can impose. I’ve had my moments, to be sure, but overall, I’m proud of how I’ve changed for the better and persevered. Though cancer has proven over the years to be an equal-opportunity-disease, my diagnosis has never caused me to feel doomed (a little gloomy, maybe). Moreover, I’ve always felt hopeful and as such have tried to be proactive, open and compliant in order to give myself every possible advantage in this life yet to be lived. Woe is not me. Why is of no concern. How it could have happened is of no particular interest. Reviewing my past transgressions never mattered to my oncologist. His only concern was the future and treating me forward. For the most part, I have embraced that/his philosophy, except at this time of the year: my still-living-with-cancer anniversary when I revisit the past–hopefully as a prelude for the future. That’s my intent, anyway. Do you mark your “cancerversary”? If so, how? _______________________________________________ “This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.” Mr. Lourie’s columns can be found at www.connectionnewspapers.com. (key word, Lourie)