CindyA

Xingxing, Welcome to the group. I'm sorry to read about your mom. Here is a link from our website that talks more about the alk gene. http://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/targeted-therapy I personally have met several people who also have experienced alk and are doing well. There is HOPE! Please keep posting and letting us know how you are both doing. Cindy

BlueWolf, is there a Nurse Navigator or Social Worker that you are connected with? She or he may be able to explain these test results more clearly. I'm glad to read that her pain is gone. How are you doing?

LUNGevity Foundation will be recognizing the makers of Alimta and Cyramza at the New York gala. If you live in or around NYC and have benefited from either of these drugs please send an email to us at hope@lungevity.org to find out about a special opportunity!

CNN Article: Jimmy Carter's cancer: What a family history of cancer means for you (The story really isn't about him, it's more about familial history of cancer and lung cancer was listed, which is something that hadn't really been associated with familial history before in the media. That's a step in the right direction in terms of awareness.) http://www.cnn.com/2015/08/18/health/jimmy-carter-family-history-of-cancer/index.html Atlanta (CNN)One look at President Jimmy Carter's family history, and you have to wonder whether he and his relatives live in fear. His brother, father and two sisters all died from pancreatic cancer. His mother had breast cancer that later moved to her pancreas, and now Carter, 90, has been diagnosed with cancer. He has not yet revealed what kind. That pedigree certainly raises suspicion of a sinister gene passed from generation to generation. It's not known whether the Carters acted on this history and sought genetic testing, and if they did, what might have been found. But genetic counselors say one thing is for sure: Many families are cursed with cancer, and it can be absolutely terrifying. Billy Carter, left, was among Jimmy Carter's close relatives who died of pancreatic cancer. "Many of them think it's not a matter of if they get cancer, but when," said Joy Larsen Haidle, president of the National Society of Genetic Counselors. But just because family members had cancer doesn't necessarily mean you'll get cancer. There are many variables: Who in your family has had cancer -- close or distant relatives? Were they from one side of the family or both? Did they get cancer at a young age, when cancer is rare, or at an older age, when cancer is more common? If you've noticed cases of cancer in your family, the first thing to do is speak with a genetic counselor. Certain family history patterns signal there might be a bad gene in the family, while other patterns might point to a fluke. If it does turn out you have a serious family history of cancer, the next step is to decide whether you want to go searching for a bad gene. In some cases, as with breast cancer, knowing you have a bad gene can help you make decisions, such as whether to have a mastectomy before cancer strikes. Other times, knowing won't help you; it may not be worth looking for it. Whatever you do, Otis Brawley, the chief medical officer at the American Cancer Society, has one piece of advice: Talk to a genetic counselor before you go searching for bad genes, even if it costs a few hundred dollars. Genetics is a tricky, complicated business, and doctors typically don't know all the ins and outs. According to the American Cancer Society, only about 5% to 10% of all cancers result directly from inherited bad genes. "I've seen many people waste thousands of dollars," Brawley said, and some who've been given inappropriate testing. The National Society of Genetic Counselors website has a tool that can help find a genetic counselor near you. Below is a list of the six cancers in the United States that kill the most people. Together, they take hundreds of thousands of lives every year. Experts shared who should get tested, what that testing means and what you can do with the results. But first, a few notes: 1. Not all experts agree on what constitutes a family history of cancer. Bottom line: If you're worried, go talk to a genetic counselor. 2. To constitute a family history, the cancers don't have to be of the same type -- breast, liver, lung etc. Some genes increase the risk of more than one type of cancer, so pay attention to a family history of a variety of cancers, as those cancers might be genetically linked. 3. If testing does not find a bad gene (technically called a gene mutation), that doesn't mean your family doesn't have one. It may mean you have a gene mutation that hasn't been discovered yet, so there isn't a test for it. DEADLIEST CANCERS: LUNG What constitutes a family history of lung cancer? Research on lung cancer genetics is still in its early stages, so it's not clear what constitutes a family history. Seek genetic counseling if you have two or more relatives on the same side of the family with lung cancer. If I have one of these gene mutations, what are the chances I'll get lung cancer? About 20 genes are linked to lung cancer, and the risk they confer varies. For example, if you carry a mutation in the p53 gene and you smoke, you have a 50% risk of getting lung cancer in your lifetime, compared to about a 14% risk for smokers who don't carry a mutation. Because the research is still in the early stage, consider going to a center that specializes in lung cancer genetics, such as Johns Hopkins in Baltimore, Sloan Kettering in New York, Dartmouth in New Hampshire, the University of Cincinnati or Louisiana State University. If I do test positive for a gene mutation, what can I do? First of all, don't smoke. Second, ask your doctor about screening with a spiral CT scan, which can catch lung cancer at a very early stage. Such screening needs to be considered carefully, since the scan itself contains radiation, which increases the risk of cancer. To learn more, see information from the Centers for Disease Control and theAmerican Cancer Society. DEADLIEST CANCERS: COLON What constitutes a family history of colon cancer? • If you have two relatives with colon cancer on the same side of your family. • If you have one relative with early onset colon cancer (age 50 and under). • If you have a relative who's had 10 or more benign polyps. • If a relative has had both colon and endometrial cancer. • If you've been diagnosed with colon cancer at age 50 and under. If I have one of these gene mutations, what are the chances I'll get cancer? Most people have about a 5% to 6% chance of getting colon cancer in their lifetime. People with MLH1 and MSH2, two of the more common mutations for colon cancer, have a 50% to 60% lifetime chance of getting colon cancer. Some 18 other genes are linked to colon cancer, conferring varying levels of risk. If I do test positive for the gene mutation, what can I do? You can get regular colonoscopies with a gastroenterologist who has expertise in your genetic mutation. To learn more, see information from the American Cancer Society. DEADLIEST CANCERS: BREAST What constitutes a family history of breast cancer? • If you have two relatives on the same side of the family with early onset breast or ovarian cancer (early onset means age 50 or younger). • If you yourself have been diagnosed with breast cancer under age 45 or ovarian cancer at any age; genetic testing can help you make treatment decisions and can help other family members. • If anyone in your family had triple negative breast cancer under the age of 60. • If any male relative had breast cancer. • If you're of Ashkenazi Jewish heritage and breast or ovarian cancer runs in your family. If I have one of these gene mutations, what's the chance I'll get cancer? Any woman has about a 12% chance of getting breast cancer. A woman with a BRCA1 mutation may have as high as an 80% risk during her lifetime of getting breast cancer. A woman with a BRCA2 mutation has about a 45% risk. There are about 18 other gene mutations linked to breast cancer, and each one confers a different risk. If I do test positive for the gene mutation, what can I do? You can do regular screenings with MRI in addition to mammograms. You can also consider having your breasts and ovaries removed as a preventive measure. (Breast and ovarian cancers are genetically linked.) You can also consider taking the drug tamoxifen. To learn more, see information from the Susan G. Komen Foundation and theNational Society of Genetic Counselors. DEADLIEST CANCERS: PANCREATIC What constitutes a family history of pancreatic cancer? Genetic testing should be considered if two or more close relatives -- your parents, siblings or children -- have had pancreatic cancer, or if you have a family history of breast, ovarian, or colon cancer or melanoma as well as pancreatic cancer among your close relatives. If I have one of these genes, what are the chances I'll get cancer? There are about 12 gene mutations linked to pancreatic cancer. Depending upon which you have, you have a three- to tenfold increased chance of getting pancreatic cancer compared with someone who doesn't have a mutation. If I do test positive for the gene mutation, what can I do? You may want to become involved in a clinical trial, such as one at Johns Hopkins, the Cancer of the Pancreas Screening-5 CAPS5)Study, where early detection screening is provided by endoscopic ultrasound. To learn more, see information from the Sol Goldman Pancreatic Cancer Research Center and the American Cancer Society. DEADLIEST CANCERS: PROSTATE What constitutes a family history of prostate cancer? • If you have two or more relatives on the same side with early onset prostate cancer (under age 50). • If you have any relative with a Gleason score of 7 or higher. If I have one of these gene mutations, what are the chances I'll get cancer? There are about seven gene mutations linked to prostate cancer, and the risk they confer varies. For example, having the BRCA gene mutation means you have about a 20% chance of getting prostate cancer before you turn 70, while men without any mutation have about a 14% chance of getting prostate cancer before turning 70. If I do test positive for the gene mutation, what can I do? You can start screening earlier than normal -- at age 40, or 10 years before the earliest prostate cancer diagnosis among your relatives, whichever is earlier. For example, if your relative was diagnosed at age 40, start screening at 30. If he was diagnosed at 60, start screening at 40. Doctors will watch your prostate-specific antigen, or PSA, level and how quickly it increases over time. To learn more, see information from the American Cancer Society and theNational Cancer Institute. DEADLIEST CANCERS: LIVER It's not clear whether liver cancer runs in families, and there are no specific genetic tests. If cancer is found in the liver, be sure to ask the doctor whether it started there -- many people think they have liver cancer when the cancer actually started somewhere else and spread to the liver. To learn more, see information from the American Cancer Society. Sources: The information for breast, liver, prostate and colon cancers came from Larsen Haidle of the National Society of Genetic Counselors and Jason Flanagan, a genetic counselor at Sanford Health in Sioux Falls, South Dakota. Information for pancreatic cancer came from Alison Klein, a geneticist at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins. Information for lung cancer came from Christopher Amos, a geneticist at Dartmouth-Hitchcock Norris Cotton Cancer Center. CNN Health's John Bonifield contributed to this story.

Hi TeresaJ, Welcome to the Lung Cancer Support Community message boards. I'm sorry you have to be here. What kind of support are you interested in? LUNGevity has the LifeLine service where we connect you with a mentor who can talk to you about their experience & how they have been affected by lung cancer. Here is the link to get started. http://www.lungevity.org/support-survivorship/get-connected/lungevity-lifeline Or are you seeking smoking cessation help? American Lung Association is a good resource for that type of support. Please post and let us know how we can help. Looking forward to getting to know you. Cindy

Hello gattgato, Welcome to the Lung Cancer Support Community message boards. I am sorry to hear that your friend has been diagnosed with lung cancer. I am happy to read that her baby is doing well. There is HOPE. Here is a link to more information about ALK. http://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/targeted-therapy Also, here is a response from another member who has experienced ALK: "I have lung cancer and tested positive for the ALK genetic mutation. I am on an oral therapy. I take a pill twice a day, it's called Crizobnib or Xalkori. It is a fairly new treatment specifically for the ALK mutation. It has shown remarkable success. Minimal side effects!! I really don't even know I am taking it Please keep posting and letting us know how she is doing. You can also send her the link to join our group in case she has any questions or would like some advice. Cindy A.

http://www.lungevity.org/support-survivorship/get-connected/blog/food-as-nature%E2%80%99s-medicine-%E2%80%93-our-top-6-cancer-fighting-food-0 By Olivia Podolsky Everyone has heard the phrase “you are what you eat.” Although popular, this phrase is often forgotten in today’s fast food world. Diet plays an important role in all aspects of health, but can become even more important with a cancer diagnosis. Recent evidence suggests that diet may modify the risk of developing many cancers as well as in developing diabetes and heart disease. For example, intake of dietary fiber and higher consumption of fruit, vegetables, and fish, has been associated with reduced risk of some cancers. Population studies have also demonstrated that processed meat, dairy, alcohol and saturated fat increase can the overall risk of developing certain cancers. 1 Another popular phrase, coined over 2000 years ago by Hippocrates, states “Let food be thy medicine and thy medicine thy food.” There has been much research that indicates that plant foods – “Nature’s Pharmacy” – can influence gene function (epigenetics) and, as a result, affect our health. For example, vegetables and fruits containing high levels of carotenoids, such as carrots, sweet potatoes, spinach, kale, papaya, and tomatoes are linked to lower cancer incidence. Cruciferous vegetables like cauliflower, cabbage, cress, bok choy, and broccoli, are also shown to lower cancer risk. Along with carotenoid rich foods and cruciferous vegetables, antioxidant rich foods like blueberries, blackberries, green tea, and garlic are also associated with a reduced risk of developing cancer. Other studies, primarily in animals and in the lab, have shown that plant foods can slow or halt the growth and spread of cancer cells. While promising, it is important to note that much of the research on plant foods in affecting cancer cells’ growth and spread has not been conducted in humans and is not considered a cure or treatment for cancer. 2 All of these studies strongly suggest that consuming a mainly plant based diet is beneficial for our health and for the prevention of diseases including heart disease, diabetes and cancer. So what are some of the most promising and important fruits and vegetables to include in your cancer fighting diet? Read more about our top 6 phytonutrient-rich, disease-fighting foods that are part of Nature’s Pharmacy. 1. Tomatoes Scientists have recently found that lycopene, the chemical that gives tomatoes their red color, works to destroy oral cancer cells in the laboratory. Some scientists believe that lycopene strengthens the body’s natural ability to kill of cells that are not developing properly. 2 2. Blueberries Blueberries are one of the richest sources of ellagic acid. There have been many studies done that have demonstrated that people who consume foods high in ellagic acid are three times less likely to develop cancer when compared to those who consume very little of this phytonutrient. 3 3. Pomegranates Pomegranates are an excellent source of Vitamin C, K, folate and fiber. They are rich in antioxidants and phytochemicals. All three parts of the pomegranate, seeds, peel, and juice, have been studied for their cancer fighting antioxidant properties in the lab and on animals. 4 4. Brazil Nuts Brazil nuts are rich in selenium, a mineral that has been shown to lower cancer risk in animals. They are also rich in fiber, protein, and ellagic acid. 5 5. Broccoli Broccoli, a member of the cruciferous family of vegetables, is a great source of Vitamin C, carotenoids, fiber, calcium and folate. Broccoli is a rich in phytochemicals known as indoles, which are particularly helpful at combating breast cancer because of their ability to rid the body of excess estrogen in animals. 7 6. Flaxseeds Flaxseeds are excellent sources of fiber and omega-3 fatty acids. Flaxseeds are rich source of lignans, phytochemicals with beneficial antioxidant and phytoestrogenic properties. 6 In summary, whole plant foods contain a wide array of nutrients including vitamins, minerals, and phytonutrients, which provide our bodies with balanced nutrition – nature’s way of keeping us healthy and fight disease. By adopting a whole foods approach to eating, we can ensure an optimal intake of these powerful nutrients. A cancer-fighting diet that is concentrated in a variety of whole grains, fruits and vegetables, legumes, tea, nuts, and seeds can truly allow our bodies to “be what we eat”! ______________________________________________ Reposted by permission. Original article can be found on Meals To Heal's website.

Hi Rgagmg88, Welcome to the LCSC message boards. I'm sorry to read about the news of your dad. Tom is right, LUNGevity's website has a lot of good information. This link talks about the right questions to ask, and there is also a checklist that you can take with you to his next appointment. http://www.lungevity.org/support-survivorship/asking-right-questions/questions Please keep posting and letting us know how you both are doing. Take care, Cindy A.

Hi KStrikler, Welcome to the message boards. Thank you for introducing yourself and sharing your story. I am attaching a link that goes into more detail about therapy. http://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options-for-lung-cancer LUNGevity has a wealth of information. We also have a LifeLine service that connects you to a mentor that has gone through a similar situation. Please feel free to message me if you would like more information. In the meantime, please search around in the message boards. We are here for you.

Stand Up To Cancer Named August LUNGevity Hero www.lungevity.org/heroes-blog Stand Up To Cancer Named August LUNGevity Hero Print this page Lung Cancer Dream Team Focuses on Hard-to-Treat KRAS Mutant Lung Cancer FOR IMMEDIATE RELEASE Media Contact: Aliza Bran abran@susandavis.com (202) 414-0798 WASHINGTON, August 2015 – LUNGevity Foundation has named Stand Up To Cancer (SU2C) the August LUNGevity Hero in recognition of the organization’s role in making cancer research a national priority. More recently, SU2C has brought lung cancer to the forefront of public attention by launching the first Lung Cancer Dream Team with the American Cancer Society (ACS), with support from Bristol Myers Squibb, composed of leading researchers dedicated to understanding and treating the KRAS mutation of lung cancer, a genomic mutation that affects 20 to 25 percent of all non-small cell lung cancer patients, but for which there currently is no effective treatment. Created in May 2008 by the Entertainment Industry Foundation, SU2C is an initiative that seeks to expedite cancer research and treatment through its 16 Dream Teams, 2 Translational Research Teams, 26 Innovative Research Grants, and over 942 scientists, and raise public understanding of cancer by leveraging the film and media industry’s resources. Each Dream Team combines the skills and expertise of leading cancer experts who conduct innovative studies to help patients live longer, better lives. In April 2015, under the leadership of SU2C President and CEO Sung Poblete, the group introduced the new SU2C-ACS Lung Cancer Dream Team. “It is a hallmark of Stand Up To Cancer that our translational research result in patient benefits during the three years in which the Dream Teams are funded,” explained Sung Poblete, PhD, RN, president and CEO of Stand Up To Cancer. “SU2C is focused on accelerating research to save lives now and to make cancer patients become cancer survivors. The leaders of this Dream Team built on their experiences in prior SU2C-supported research and demonstrated the highest level of collaboration we’ve seen in a team prior to their selection. We are so excited that they are ready to hit the ground running to accelerate research that will make a difference in the lives of cancer patients and we’re very pleased by LUNGevity’s recognition of our work.” Led by Jeffrey A. Engelman, MD, PhD, associate professor of medicine at Harvard Medical School and director of thoracic oncology at Massachusetts General Hospital Cancer Center in Boston, and Jedd Wolchok, MD, PhD, chief of the Melanoma and Immunotherapeutics Service at Memorial Sloan Kettering Cancer Center in New York, the Dream Team will study and determine best treatments for the KRAS mutation. Cancers with gene mutations such as KRAS, which do not respond well to standard methods, are notoriously difficult to treat. With the aid of a three-year, $20 million grant, the Team will conduct a thorough investigation using a three-pronged approach: identifying effective targeted therapies, harnessing the immune system, and integrating targeted therapies and immunotherapies to develop the best combination treatment for KRAS mutated lung cancer. LUNGevity President and Chairman Andrea Ferris serves as patient advocate for the team. “LUNGevity Foundation is proud to name Stand Up To Cancer the August LUNGevity Hero for supporting dedicated research into the treatment of KRAS mutated lung cancer, which makes up a quarter of all non-small cell lung cancer cases, and for harnessing its powerful platform to bring much needed attention and awareness to the disease,” said Andrea Ferris, president and chairman of LUNGevity Foundation. “We are very pleased to be a patient advocate for this Dream Team, providing the patient perspective and supporting critical research.” For more on Stand Up To Cancer, see the LUNGevity Heroes blog atwww.lungevity.org/heroes-blog. For more information on LUNGevity Foundation, please visit www.LUNGevity.org.

SATURDAY, SEPTEMBER 12, 2015 MARRIOTT PORTLAND DOWNTOWN WATERFRONT, 1401 SW NAITO PARKWAY, PORTLAND, OR 97201 A survivorship conference for anyone who has ever been diagnosed with lung cancer Saturday, September 12, 2015 LOCATION Marriott Portland Downtown Waterfront 1401 SW Naito Parkway, Portland, OR 97201 SCHEDULE 10:00 am - 4:00 pm - Conference sessions 5:00 pm - 7:00 pm - Networking reception ABOUT REGIONAL HOPE SUMMIT NORTHWEST LUNGevity HOPE Summits are unique national and regional survivorship conferences that educate, empower, and create a community of support for lung cancer survivors. At HOPE Summits, LUNGevity serves as a bridge between patients, their families, and the medical and support communities. While lung cancer survivors are encouraged and invited to attend, caregivers and medical professionals wanting to learn more about lung cancer survivorship are also welcome. All conference sessions will be geared toward those who have been diagnosed with lung cancer. The summit is free to attend, but registration is required to save your seat. The featured expert speaker will be Dr. Jeremy Cetnar of Oregon Health & Science University.

Hi Ruby, Welcome to LUNGevity's Lung Cancer Support Community message boards. If you feel that your doctor doesn't have a sense of urgency you may want to seek out another opinion. Here is a link to a survivors' story on her thoughts of second opinions. http://www.lungevity.org/support-survivorship/get-connected/blog/lung-cancer-advocate-jane-elterman Please keep posting. I look forward to getting to know you.

Hi Amy, You have some great advice on here. I just wanted to add that LUNGevity has a link for questions to ask, and checklists to take with you. Here is the link to those. http://www.lungevity.org/support-survivorship/asking-right-questions Please keep us updated and let us know if you have any questions. Best, Cindy

Hi DonnaC, I like Randy's idea of getting a notebook for questions. I encourage you to read this Survivor blog from the LUNGevity website. http://www.lungevity.org/support-survivorship/get-connected/blog/in-contrast You can also search "sypmtoms", & "checklists" on the top right corner of the LUNGevity website. (If you are on a mobile device the search bar will be at the very bottom). Please keep posting, I look forward to getting to know you.

Hi DebbieY, The last time you wrote, you mentioned you were about to start chemo again. Are you doing okay with it?

Snowflake, how have you been?

What is going on in your life RIGHT NOW that is wonderful?

LSU Girls Rock - Have you considered LUNGevity's LifeLine Program? I feel it may be what you are looking for. Please private message me if you have any questions about this program. www.LUNGevity.org/LifeLine

Hi MaryMurph, I hope you are doing well. It's been awhile since we have heard from you. Please keep posting. I look forward to getting to know you.

Hi Carly, LUNGevity's website has great resources. Here is a link that I feel may help you. It is a list of "Asking the Right Questions" http://www.lungevity.org/support-survivorship/asking-right-questions Please keep posting, I look forward to getting to know you.

Hello Linda, welcome to the group. I am sad to hear that your ad has already gone through so much. It sounds like you would benefit from our LifeLine program. Maybe we could find you a mentor in the Chicago area? Here is the link if you would like to go ahead and fill out some primary information: www.LUNGevity.org/LifeLine Please keep posting and letting us knwo how you both are doing. Sending you positive and healing energy, Cindy

Hello Denzie, Thank you for joining the message boards and sharing your story. I'm happy to read that you are stable and NED! That's fantastic news!

Hi Suzanne. How are you doing? If you have any questions on how to navigate the message boards, please feel free to send me a message.

Hi everyone. I'm looking for New York Survivors who have taken Alimta for a possible opportunity. Please email me at calmendarez@lungevity.org for more information. Thanks!

Hi Sam, It sounds like you have a great support team. That's fantastic! We are here for you too. How are you feeling? I want to share this video with you about someone who has a similar diagnosis LUNGevity also has the LifeLine service available to you as well. We can connect you with a mentor with a similar diagnosis for you or your caregiver to communicate with. Here is the link for more information: http://www.lungevity.org/support-survivorship/get-connected/lungevity-lifeline Also, If you have any questions about navigating the message boards please feel free to send me a message.