Melinda

Christina, I contacted them--but as it was late Friday afternoon, I am not expecting to hear from them until Monday/Tuesday. If I don't hear back by then, I will place a phone call. I don't know what the "volunteers" do, but am particularly curious to find out. I will post (and/orPM you) any and all additional information I receive on the board. Last year (the first NYC walk/run) apparently over 6,000 people participated. Not bad. And I am telling everyone I know in the tri-state area about it (and asking them to participate in lieu of birthday, engagement gifts, etc.). I am also trying to see if I can can find out what "corporate sponsership" entails ($$$) and see if I can enlist any additional sponsers. I also plan to make sure that my friends at various news/media organizations know about the event and give it plenty of press. Let's hope for good weather on Sunday, April 25th in NYC. I might not acheive any of this--but a gal can try, right? It is time that the general public got the information they need to know (and we need them to know) about LC!!! I knew NOTHING about this disease only TWO weeks ago!--How appalling is that?!? Sincerely, Melinda

Our thoughts are with BOTH of you. Melinda

Welcome, Karen! I am glad that your mom sent you this link and I hope your "lurking" has been helpful to you. We, however, are glad that you are out of "lurk" mode. I only found this site a week ago and it has already helped me (and my fiancee) tremendously. I know how hard it is to be so far away from your parents when they are sick (my mom had just decided to return to North Carolina--where she grew up--when she was diagnosed with breast cancer for the 2nd time, this past fall). All the best, Melinda

You might want to take a look at The Thomas G. Lebrecque Foundation. This foundation is the one that organizes a run/walk/awareness raising for LUNG cancer in New York's Central Park (April 25th, this year) and has a lot of corporate sponsers (who may underwrite administrative costs). Web site: https://www.tglclassic.com Its goals are to: 1) To spread awareness that anyone, at any age, can suffer from lung cancer. 2) To support lung cancer research by funding the development of new treatments and better screening tools. 3) To justly focus media and grassroots attention on LUNG cancer, since it is the #1 cancer killer in the U.S. 4) To continue the fight... I'm sorry I don't know more--I just learned about it myself today (we were only dx'ed last week). I also worked for a not-for-profit and am extremely aware of how important it is to find out what percent of your donation actually goes to cause you wish to fund! As someone whose finacee's mother just was dx'ed with stage IV LC--I understand, and applaud your sister's decision. If I find out any more, I will let you know. Melinda

Thank you--I have passed the information along. Melinda

Targeted Lung Cancer Treatment Causes Tumor Regression in Some Patients Therapy Works Best in Never-Smokers CHICAGO, June 1, 2003 – A new study suggests that a drug called erlotinib (TarcevaTM) has promising activity in patients with bronchioloalveolar cell carcinoma (BAC), a type of non-small cell lung cancer generally considered to be resistant to chemotherapy. Researchers from Memorial Sloan-Kettering Cancer Center (MSKCC) reported the preliminary results today at the American Society for Clinical Oncology annual meeting. "While it is premature to make any conclusions about survival, we found that this treatment induced regressions that were often dramatic in patients with advanced BAC, and that the responses seem more durable and meaningful than what we have seen with chemotherapy," said the study's lead investigator Vincent Miller, MD, medical oncologist at MSKCC. "The treatment was especially effective in those patients who never smoked," he added. Erlotinib is a small molecule that works by blocking the activity of an enzyme called "epidermal growth factor receptor (EGFR) tyrosine kinase," which helps communicate information within the cancer cell. EGFR is found on the surface of many tumor cells and may be involved in the growth and virulence of those cells. BAC has certain pathologic and clinical features that distinguish it from other lung cancers. Approximately 3 percent of all lung cancer patients have what are called pure BAC tumors, but overall about 20 percent of an estimated 135,000 non-small cell lung cancers diagnosed each year possess some BAC features. BAC tends not to metastasize, but rather to spread within the lung causing symptoms such as shortness of breath and sputum production. Chemotherapy usually does not work as well for people with this type of lung cancer as it may in other types. BAC is increasing in incidence and it is more common in women and in individuals who never smoked. In this phase 2 study, 33 patients with BAC or adenocarcinomas with BAC features were accrued to the trial and began treatment between June and December of 2002. Nine of the patients never smoked. Eight out of 30 patients who completed at least one month of therapy achieved a partial response. Of the eight patients who responded, five never smoked, two smoked one pack a day for less than 10 years, and one was a heavy former smoker. Two patients died from progression of their disease. "The particularly encouraging activity of this drug in never-smokers suggests that tobacco-related genetic changes in this patient population may influence resistance to this drug. Further research is necessary to address this possibility," said Dr. Miller. According to the study's authors, BAC has not been well studied, yet it is a significant problem that needs to be looked at separately and perhaps treated differently in the future. Previous studies of erlotinib have shown promising activity in the treatment of advanced non-small cell lung cancer patients whose tumors had not responded to initial chemotherapy, and anecdotally, some of the most striking results occurred in individuals with BAC. This led investigators to conduct the current trial in an attempt to begin to better define the activity of this agent specifically in patients with BAC. Patients in this study experienced modest side effects including rash and diarrhea, most of which seem to attenuate over time. "This is not a panacea, but to see a therapy actually cause tumor regression in a meaningful percentage of patients with this disease is really unexpected and a pleasant surprise. The hope is to ultimately manage BAC like a chronic disease." Investigators from Vanderbilt University Medical Center also contributed to the research, which was funded by Genentech Inc., South San Francisco, CA. Memorial Sloan-Kettering Cancer Center is the world's oldest and largest private institution devoted to prevention, patient care, research, and education in cancer. Our scientists and clinicians generate innovative approaches to better understand, diagnose and treat cancer. Our specialists are leaders in biomedical research and in translating the latest research to advance the standard of cancer care worldwide. Journalists may contact the Department of Public Affairs for more information. Telephone: 212-639-3573 Email: publicaffairs@mskcc.org http://www.mskcc.org/mskcc/html/13825.cfm

The web address for this is: http://www.mskcc.org/mskcc/html/14468.cfm ------------------------------------------------------------------------------------- Here you can find a continually updated listing of Memorial Sloan-Kettering's current clinical trials for lung cancer. To learn more about a study, choose from the list below. -------------------------------------------------------------------------------- 3-D Reconstruction of CT Scan Images in the Evaluation of Non-Specific Pulmonary Nodules Feinstein Marc B M.D. [Protocol 03-039] Acupuncture for Chronic Shortness of Breath in Cancer Patients Cassileth Barrie Ph.D. [Protocol 01-096] DNA Repair & Genetic Susceptibility to Lung Cancer Rusch Valerie M.D. [Protocol 03-003] Dosing Study of N-Propionylated Polysialic Acid Vaccine in Patients with Small Cell Lung Cancer Who Have Achieved a Major Response to Initial Therapy Krug Lee M M.D. [Protocol 02-097] Low-Dose Computed Tomographic (CT) Screening for Detection of Early Lung Cancer Heelan Robert M.D. [Protocol 01-086] Methylated Genes in Blood as Biomarkers for Advanced Lung Cancer Kris Mark M.D. [Protocol 02-111] Methylated Genes in Blood as Biomarkers for Early-Stage Non-Small Cell Lung Cancer Rusch Valerie M.D. [Protocol 02-112] Phase I/II Trial of OSI-774 (Erlotinib, Tarceva) in Patients with Advanced Non-Small Cell Lung Cancer Miller Vincent A M.D. [Protocol 02-115] Phase I/II Trial of Weekly ABI-007 in Patients with Advanced Non-Small Cell Lung Cancer Who Have Not Had Chemotherapy for Metastatic Disease Rizvi Naiyer A M.D. [Protocol 03-111] Phase II Study of KOS-862 in Patients with Non-Small Cell Lung Cancer that has Progressed Following Initial Therapy for Advanced or Metastatic Disease Rizvi Naiyer A M.D. [Protocol 03-134] Phase II Study of Soblidotin (TZT-1027) in Patients with Progressive Locally Advanced or Metastatic Non-Small Cell Lung Cancer Rizvi Naiyer A M.D. [Protocol 03-016] Phase II Study of ZD6474 and ZD1839 (Iressa) as Second-Line Therapy for Locally Advanced or Metastatic Non-Small Cell Lung Cancer Rizvi Naiyer A M.D. [Protocol 03-090] Phase II Trial of Cisplatin, Gemcitabine & Daily Erlotinib (OSI774, Tarceva) in Patients with Locally Advanced Non-Small Cell Cancer Miller Vincent A M.D. [Protocol 02-071]

I've posted this in other sections, too --------------------------------------------------------------------------------- Below please find the link to Memorial Sloan Kettering's latest press release on their study of Iressa (why it seems to work better for some with NSCLC than others): "Study Examines Why New Lung Cancer Treatment Is Effective for Some Patients but Not Others" http://www.mskcc.org/mskcc/html/18608.cfm Let me know if you can't access the link, and I will post the article. Melinda

Below please find the link to Memorial Sloan Kettering's latest press release on their study of Iressa (why it seems to work better for some with NSCLC than others): "Study Examines Why New Lung Cancer Treatment Is Effective for Some Patients but Not Others" http://www.mskcc.org/mskcc/html/18608.cfm Let me know if you can't access the link, and I will post the article. Melinda

Becky-- In addition to showing everyone (including us--who already had a pretty good sense) what a strong and incredible person you are--------think of all the people who read that article who now know more about LC!!! Every student/facultymember/staff member you come into contact with is now FAR better informed. Think about how many people they, in turn, may educate and help. I only wish I had read an article like that 6 mos ago! I can only give thanks that there are others who may benefit. Thank you!!! Melinda

Anyone in the NYC TRi-State area want to volunteer/participate with me? ------------------------------------------------------------------------------------- Thomas G. Labrecque Foundation About Us The foundation was founded in 2002 by the Labrecque family in honor of Tom’s memory. At the age of 62 the former Chairman of Chase, a non-smoker, died from lung cancer. Tom’s family and friends initiated the Thomas G. Labrecque Classic, “Run as One” event, with the hopes of raising lung cancer awareness and vital research dollars to find a cure. We Pledge To spread awareness that anyone, at any age, can suffer from lung cancer. To support lung cancer research by funding the development of new treatments and better screening tools. To justly focus media and grassroots attention on lung cancer, since it is the #1 cancer killer in the US To continue the fight… Race Information and Registration Who’s participating so far? More than 6,000 adults and children are expected to participate this year. Participants include Tom’s family and personal friends; Tom’s “extended family” at JP Morgan Chase; members of New York Road Runners Club; physicians, nurses, staff and patients from Memorial Sloan-Kettering Cancer Center, and hundreds of other caring individuals. Activities for children of all ages will follow the race. The funds raised will go towards research and lung cancer awareness, with all research dollars going to Memorial Sloan-Kettering Cancer Center. Corporate Sponsers: JP MorganChase Pfizer Verizon Bloomberg Wyeth Time Warner Prudential Financial March and McLennon Incorporated Citigroup 850 Third Avenue, 21st Floor NY, NY 10022, USA phone 212-331-6855 | fax 212-331-6608 www.tglclassic.com

Mo, You are a fighter, extrordinaire! Our thoughts are with you--and we are glad you got that sticker/tags. You don't need ANY unecessary stress!!! Hurray for better parking spots! --Melinda

Dear all, Thank you for your prayers and well wishes. They mean so much. The bone scan today indicated that she also has mets to the femur. We are waiting to hear the MRI results to find out about mets to the brain. She started Zometa today, though. Trying hard to keep her/their spirits up---this is all so terrifying/demoralizing. And we have JUST begun!!!???!!! I feel so helpless to assist them--this board has been a Godsend. Thank you, all. Melinda

Gayle, I'm afraid I, too, do not have nay answers for you--but my thoughts are with you and your mom. My fiancee's mother mentioned yeaterday that her ankles were swelling--and thanks to all the responses to your post--I have been able to pass information along to my fiancee and his parents to make sure they make the onc. aware of it. We thought she had just been on her feet a lot that day (which, may very well be the case). Hang in there, Melinda

Dear all, My fiancee's mother is going in for two tests tomorrow: 1) a more detailed bone scan that will tell us how advanced the bone mets are 2) an MRI to let us know whether or not she has mets to the brain. (Please, no; please, no; please, no!) My stomache is churning even as I write about it. If all goes well there--she is scheduled to start daily radiation to right lung (5 days/wk); weekly chemo; and Zometa on Monday at New York Hospital. We met with the radiologist and she had her "port" for chemo put in yesterday. She is also scheduled to meet with doctors for a second opinion at Memorial Sloan-Kettering on Wednesday (a week from today). The whole family has started doing yoga with her and cooking healthy, organic meals (that don't irritate her throat) to build up her strength before the treatment begins. Please keep her in your thoughts, as you all are in mine. Her name is Anna. Thank you. Melinda

Dear Cheryl and Jack, As I am am new to both this disease and this site (fiancee's mother dx'ed Friday 3/12/04)--I am just learning about GVAX. You are in our thoughts. Melinda

John, Thank you for the information--I have passed it on. She is currently being treated by Dr. David Wolf at New York Hospital (who is WONDERFUL!) but has an appointment to get a second opinion at Sloan Kettering next Wed. (We concur with you about ALWAYS getting a second opinion). Her Chemo may start as soon as this Friday, though (one week from dx; that's good, right?). We are taking her to see the radiologist and get a tube in her chest for the Chemo tomorrow. Thanks, again. Melinda

Erin, I am so sorry to hear the new news. My fiancee's mother is in a similar boat (she was just dx'ed on Friday) and we collectively feel like we have been hit by a Mack truck. I made a couple of posts today trying to find out what bone mets really meant. I was just going to see if any responses had been posted when I saw your note. I have read about a BUNCH of people with stage IV mets to bone who are still alive and kicking or in remission (and even one or two who are cancer free!). Has your mom had a PET scan? Brain scan? Does she have spinal pain? Have her ask her doctor about Zometa--I've been reading a lot about that (see Don Wood's posts). You are in my thoughts. Melinda

Denise-- Thank you for your welcome and your mom's story. I am SO glad to hear that she is doing well! It gives us hope. I forward every postive thing I find to them--and it seems to make this a little easier for them. I am so very glad that spring is almost here in NYC--I think it might make these initial first weeks easier for my fiancee and his family (they all worked on gardening together today--something his mom LOVES and misses about not being in New Hampshire). Chemo may start as early as Friday (one week from the dx!). That's good, right? Time is of the essence... Your mom--and everyone else I have read about on this site--is in our thoughts. Sincerely, Melinda

Hi, everybody-- Thank you for your warm welcome to this board. My fiancee is really confused/scared about what mets to the bone actually means. Right now he is trying to just spend as much "quality" time (watching funny movies, seeing friends, doing projects together) with his mom before she starts treatment--and my "job" (and natural bent) is to do what "research" I can and pass the information on to him so that they can ask the doctors more informed questions. Is it posible that mets to the bone can be *eradicated* or is treatment simply "pallitiave"? Or is it somewhere in-between (trying to keep it stagnant)? I have read on this board that mets to the liver seems to heal in cases, but I know that the liver has such wonderful powers of regeneration. Bone, I'm sure, is a seperate case entirely. And I have read that it provides the cancer with a lot of what it needs to proliferate. We are under the assumption that surgery to the spine/hip is not an option for mets to the bone. Would they ever consider a hip replacement for someone with mets to the hip? We are also assuming that lung surgery is not an option for people with mets to the bone, based on the research we've done. Why exactly is that? Why don't they operate on the primary site (the lung) after an initial round of radiation/chemo/drugs to attack the bone mets? I'm sure there's a good reason, but to those of us who just learned about this whole darm dx on Friday 3/12/04--it seems like leaving a tumor in her lung/nodes is just a yet another ticking time bomb. Most of the research I've done over the weekend on lc with mets to the bone was superficial. Frustrating. Also, what side effects may be coming our way (bone pain to be treated be drugs--what drugs?)? Trying to avoid fractues and hypercalcimia. Anything else? Right now she has NO bone pain, whatsoever. No pain at all, in fact, except that she is tired from excessive coughing and she is hoarse. And scared by this mack-truck that just smacked into her last week. Any insight would be most welcome. Don, you sound like you may know a great deal about this. Thanks. Melinda

Hi, everybody-- Thank you for your warm welcome to this board. My fiancee is really confused/scared about what mets to the bone actually means. Right now he is trying to just spend as much "quality" time (watching funny movies, seeing friends, doing projects together) with his mom before she starts treatment--and my "job" (and natural bent) is to do what "research" I can and pass the information on to him so that they can ask the doctors more informed questions. Is it posible that mets to the bone can be *eradicated* or is treatment simply "pallitiave"? Or is it somewhere in-between (trying to keep it stagnant)? I have read on this board that mets to the liver seems to heal in cases, but I know that the liver has such wonderful powers of regeneration. Bone, I'm sure, is a seperate case entirely. And I have read that it provides the cancer with a lot of what it needs to proliferate. We are under the assumption that surgery to the spine/hip is not an option for mets to the bone. Would they ever consider a hip replacement for someone with mets to the hip? We are also assuming that lung surgery is not an option for people with mets to the bone, based on the research we've done. Why exactly is that? Why don't they operate on the primary site (the lung) after an initial round of radiation/chemo/drugs to attack the bone mets? I'm sure there's a good reason, but to those of us who just learned about this whole darm dx on Friday 3/12/04--it seems like leaving a tumor in her lung/nodes is just a yet another ticking time bomb. Most of the research I've done over the weekend on lc with mets to the bone was superficial. Frustrating. Also, what side effects may be coming our way (bone pain to be treated be drugs--what drugs?)? Trying to avoid fractues and hypercalcimia. Anything else? Right now she has NO bone pain, whatsoever. No pain at all, in fact, except that she is tired from excessive coughing and she is hoarse. And scared by this mack-truck that just smacked into her last week. Any insight would be most welcome. Don, you sound like you may know a great deal about this. Thanks. Melinda

Thank you, Mo-- Reading the "gentle cyber hugs" you all have given each other on this board have put me back together after I sucumb to a wave of overwhelming grief and disbelief. And being "together" is one of the most important things I can do when I am with my fiancee and his family. I need to be strong when I am with them--and then when I fall apart, privately--I can come back here for hope and support. My mom is battling her 2nds breast cancer right now, which has been truly terrible--but there is so much more information/activism/proactive screening regarding that type of cancer. It just blows my mind that lung cancer does not get the same kind of attention (because it is viewed as a sin?!?!?!?!? cancer) when it affects *so many* people. I had no idea until Friday... Still in initial shock mode. Melinda

Thank you, Ginny and Don, Your warm welcome and stories/bios about your husband and wife, respectively, have given us much needed hope. I am very glad I found this site--it is one of the most positive sites I've found on the internet thus far. You are in our thoughts, as well. Sincerely, Melinda

Hi-- My fiancee is simply crushed by his mother's recent diagnosis. I am looking for *positive* things/stories/survival stories to tell to him in order to keep him strong (so he may better help his mom/family) through this. They all want to fight! Any *positive* stories from an analogous situation? Fiancee's mom: 60; healthy all her life w/ the exception of a 'bout with shingles a few years back; never-smoked; lived in rural areas with "clean" air; very religious; strong family ties; no history of lung cancer in family that we know of. Had a bad cough and was hoarse for about a month (12/03) Was diagnosed up with walking pnemonia (1/04) Was diagnosed with pnemonia and hospitalized on IV antibiotics (2/04) No response to treatment Found new and more aggressive doctor X-ray viewed as suspicious (2/27/04) Came down to New York; my mom got her an appt. with her oncologist who sent her to pulmonologist Given CT scan and PET scan (3/9/04) at New York Hospital Diagnosed with lung cancer with mets to nodes, spine, and hip (3/12/04). Doctor told my fiancee (but not her or his dad) it was "incurable"--she has maybe 2 years to live if it goes into remission. Goes in for MRI to see if it has mets to brain next week. Starts daily radiation and weekly chemo next week. Insurance may not cover New York Hospital--may move to Sloan Kettering. Family still in shock from dx on Friday. Thanks so much. I just don't know how else to help him/them! Melinda