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Cheryncp123

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Everything posted by Cheryncp123

  1. Check out alkpositive.org on Facebook. I think you will find all the information you need on this topic there.
  2. Pneumonitis is unfortunately one of the possible side effects of Alecensa. I have been taking the drug for 16 months now and have not had this problem however if you check out the Facebook group Alkpositive.org I am certain you will find others who have and will be glad to answer any questions for you.
  3. I have been on Alecensa for 16 months now with no progression and all side effects that I experienced in the beginning are now gone. Great drug.
  4. I have been taking Alecensa for 16 months now with no progression and all side effects that I had in the beginning are gone.
  5. I was diagnosed with ALK+ lung cancer in 2015 at which time I was started on Xalkori (crizotinib) which worked amazingly well for 29 months before I had progression and was switched to Alecensa (alectinib). I have been taking it for 16 months now and all the side effects that I had in the beginning (muscle pain, diarrhea, sun sensitivity and some edema) have all gone. I try to eat a well balanced diet and drink lots of water. I stay as active as possible and that is about it. I am still doing great on the Alecensa at this point. I am a member of the Facebook group ALKpositive.org. If you prefer not to be on Facebook I will be glad to run any questions you have by the group and I can assure you someone will have an answer. Wishing you all the best. Sam McBride
  6. Tomm, I hate to hear this, you were the first person that responded to the first post I ever made online after my diagnosis and the information and support you gave me helped more than you can know. Holding you in prayer.
  7. Tomm, when you find out whether or not you have any gene mutations let us know and we will be able to better guide you to a group specific to your mutation.
  8. I agree with Bridget until you get your scans and the doctor goes over them with you there is not a lot of help we can give you and information online is not always up to date. I hope you can get your mind off of it and enjoy your Thanksgiving.
  9. Honey, slow down take a deep breath. You are going to get a lot of differing opinions from all these doctors and you are going to be more confused than ever. Without a biopsy there is no way to know if you even have cancer. If the tumor is too small to biopsy I am not sure why they want to do a lobectomy, that seems a little extreme to me. Once you get your scans you will first of all need to decide what doctor you are going to put your trust in and don't keep second guessing your decisions, that will just stress you out even more and you certainly don't need anymore stress. Has anyone mentioned a blood biopsy to you? If not ask about one. Please keep us posted, you are extremely fortunate that you caught this in it's early stages, that rarely happens with lung cancer. Good luck to you.
  10. Your symptoms sound very similar to mine. I think for the location of your tumors (in nearly the same area as my own) the symptoms you described are common.
  11. If you were diagnosed at stage 4, surgery is not usually an option, as far as radiation, unless the tumor is too close to a vital organ (heart) to radiate without causing more damage, then I don't know why that would not be an option. That is a good question for your doctor.
  12. Bethany, you will find that each of us has a different answer to your question, how long before you started treatment. For me it was 8 weeks from the time of diagnosis before I started treatment. I am on a targeted therapy drug because I have a specific gene mutation. Again everyone will have different experiences with their treatment but for me I have had very few side effects and have responded exceptionally well with my treatment. I pray for the same for your husband.
  13. Local Lung Cancer Patient Joins International Group to Fund Research to Save Their Own Lives (Place – e.g. Atlanta) ALK-positive lung cancer patient one of 1,000+-strong group announcing first 3 research studies FOR IMMEDIATE RELEASE Media Contact: LeslieTrahan [email protected] (318)355-6280 WASHINGTON, DC (June 4, 2018) — Andy Trahan is a lung cancer patient who was diagnosed February 14, 2013 after months of intense leg pain and ultimately blood clots in both legs and bilateral pulmonary embolisms. Andy’s tumor was tested and found to have a specific mutation in the anaplastic lymphoma kinase (ALK) gene, making him a candidate for one of the several new targeted therapies that target this mutation. Five years and 3 months later, Andy is able to work, play tennis, coach his son’s basketball team, travel, spend time with family, etc… A group of patients like Andy, who are living well with ALK-positive lung cancer, came together in 2015 on Facebook to support each other and share information. Today, the group has taken the name ALK Positive, and is focused on raising funds for scientific research to expand on currently available treatments in order to prolong their own lives. In 2017, ALK Positive partnered with LUNGevity Foundation, the premier private funder of lung cancer research in the U.S, to select projects that would quickly improve outcomes for the 4% of lung cancer patients who have tested positive for the mutation as well as have the potential to transform ALK-positive lung cancer into a chronic condition. Andy and I have made it our personal mission to help others who have been given a lung cancer diagnosis. Through sharing our story and advocating for more funding and research, we aim to give hope to others and increase survival rates. Our dream is to one day find a CURE! Three recipients of the new ALK Positive Lung Cancer Transformational Research Awards were announced on June 4, 2018. Each two-year project, funded with monies raised by ALK Positive, aims to understand why immunotherapy has not been successful in treating ALK-positive lung cancer and to test new immunotherapy approaches in ALK-positive lung cancer. Although the awards are specifically for ALK-positive lung cancer research, they have the potential to benefit lung cancer research in general.” Andy is looking toward the future, with hope made possible due to the rapid development of new treatments of the past few years. The old saying “it takes a village” is appropriate here. The ALK Positive village is strong and working together we will make change happen. We will change the face of lung cancer. We will find new treatments. We will make it possible for members of our village to see life milestones. We will find a CURE! About ALK-positive lung cancer ALK-positive lung cancer is found in about 4% of lung cancer cases, and is responsible for approximately 72,000 newly diagnosed cases each year and 64,000 deaths each year, worldwide. There is no proven or suspected association of ALK-positive lung cancer with any environmental toxins such as first or second hand tobacco smoke, asbestos, radon or air pollution. There is also no proven or suspected association with any particular diet, obesity or fitness level. About 50% of ALK-positive patients are diagnosed before the age of 50, about 65% are female, and the vast majority had an active and healthy lifestyle before developing ALK-positive lung cancer. About ALK Positive ALK Positive, a group of highly motivated, passionate, and dedicated ALK-positive patients and their caregivers, wants to drive change in the ALK lung cancer space. ALK Positive members are committed to raising funds for research to increase ALK-positive lung cancer patients’ survivorship. The three tenets by which they live are Information, Support, and Empathy. ALK Positive members uphold these by providing information about ALK lung cancer to each other; supporting one another around the globe to improve members’ physical and emotional well-being; and having empathy with each other because they share their lung cancer journey. For more information about ALK Positive, or to make a donation to help fund the ALK Positive Lung Cancer Transformational Research Awards, please visit www.alkpositive.org. About LUNGevity Foundation LUNGevity is the nation's leading lung cancer organization investing in lifesaving, translational research and providing support services and education for patients and caregivers. LUNGevity’s goals are three-fold: (1) accelerate research to patients, (2) empower patients to be active participants in their treatment decisions, and (3) remove barriers that patients face in accessing the right treatments. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as by providing community, support, and education for all those affected by the disease. LUNGevity’s comprehensive resources include a medically vetted website, a toll-free HELPLine in partnership with CancerCare®, a unique Lung Cancer Navigator app, peer-to-peer mentoring for patients and caregivers (LUNGevity LifeLine), and survivorship conferences. LUNGevity also helps patients find and navigate clinical trials through our Clinical Trial Finder tool, a Clinical Trial Ambassador program, and participation with Emerging Med. Our vision is a world where no one dies of lung cancer. For more information about LUNGevity Foundation, please visit www.LUNGevity.org.
  14. Local Lung Cancer Patient Joins International Group to Fund Research to Save Their Own Lives (Place – e.g. Atlanta) ALK-positive lung cancer patient one of 1,000+-strong group announcing first 3 research studies FOR IMMEDIATE RELEASE Media Contact: LeslieTrahan [email protected] (318)355-6280 WASHINGTON, DC (June 4, 2018) — Andy Trahan is a lung cancer patient who was diagnosed February 14, 2013 after months of intense leg pain and ultimately blood clots in both legs and bilateral pulmonary embolisms. Andy’s tumor was tested and found to have a specific mutation in the anaplastic lymphoma kinase (ALK) gene, making him a candidate for one of the several new targeted therapies that target this mutation. Five years and 3 months later, Andy is able to work, play tennis, coach his son’s basketball team, travel, spend time with family, etc… A group of patients like Andy, who are living well with ALK-positive lung cancer, came together in 2015 on Facebook to support each other and share information. Today, the group has taken the name ALK Positive, and is focused on raising funds for scientific research to expand on currently available treatments in order to prolong their own lives. In 2017, ALK Positive partnered with LUNGevity Foundation, the premier private funder of lung cancer research in the U.S, to select projects that would quickly improve outcomes for the 4% of lung cancer patients who have tested positive for the mutation as well as have the potential to transform ALK-positive lung cancer into a chronic condition. Andy and I have made it our personal mission to help others who have been given a lung cancer diagnosis. Through sharing our story and advocating for more funding and research, we aim to give hope to others and increase survival rates. Our dream is to one day find a CURE! Three recipients of the new ALK Positive Lung Cancer Transformational Research Awards were announced on June 4, 2018. Each two-year project, funded with monies raised by ALK Positive, aims to understand why immunotherapy has not been successful in treating ALK-positive lung cancer and to test new immunotherapy approaches in ALK-positive lung cancer. Although the awards are specifically for ALK-positive lung cancer research, they have the potential to benefit lung cancer research in general.” Andy is looking toward the future, with hope made possible due to the rapid development of new treatments of the past few years. The old saying “it takes a village” is appropriate here. The ALK Positive village is strong and working together we will make change happen. We will change the face of lung cancer. We will find new treatments. We will make it possible for members of our village to see life milestones. We will find a CURE! About ALK-positive lung cancer ALK-positive lung cancer is found in about 4% of lung cancer cases, and is responsible for approximately 72,000 newly diagnosed cases each year and 64,000 deaths each year, worldwide. There is no proven or suspected association of ALK-positive lung cancer with any environmental toxins such as first or second hand tobacco smoke, asbestos, radon or air pollution. There is also no proven or suspected association with any particular diet, obesity or fitness level. About 50% of ALK-positive patients are diagnosed before the age of 50, about 65% are female, and the vast majority had an active and healthy lifestyle before developing ALK-positive lung cancer. About ALK Positive ALK Positive, a group of highly motivated, passionate, and dedicated ALK-positive patients and their caregivers, wants to drive change in the ALK lung cancer space. ALK Positive members are committed to raising funds for research to increase ALK-positive lung cancer patients’ survivorship. The three tenets by which they live are Information, Support, and Empathy. ALK Positive members uphold these by providing information about ALK lung cancer to each other; supporting one another around the globe to improve members’ physical and emotional well-being; and having empathy with each other because they share their lung cancer journey. For more information about ALK Positive, or to make a donation to help fund the ALK Positive Lung Cancer Transformational Research Awards, please visit www.alkpositive.org. About LUNGevity Foundation LUNGevity is the nation's leading lung cancer organization investing in lifesaving, translational research and providing support services and education for patients and caregivers. LUNGevity’s goals are three-fold: (1) accelerate research to patients, (2) empower patients to be active participants in their treatment decisions, and (3) remove barriers that patients face in accessing the right treatments. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as by providing community, support, and education for all those affected by the disease. LUNGevity’s comprehensive resources include a medically vetted website, a toll-free HELPLine in partnership with CancerCare®, a unique Lung Cancer Navigator app, peer-to-peer mentoring for patients and caregivers (LUNGevity LifeLine), and survivorship conferences. LUNGevity also helps patients find and navigate clinical trials through our Clinical Trial Finder tool, a Clinical Trial Ambassador program, and participation with Emerging Med. Our vision is a world where no one dies of lung cancer. For more information about LUNGevity Foundation, please visit www.LUNGevity.org.
  15. I have never participated in a trial of any kind however crizotinib was my first line of treatment after being diagnosed with Alk positive adenocarcinoma and it worked beautifully with few side effects for 29 months at which time my scans showed some progression and I was switched to alectinib which has worked just as well with even fewer side effects. We are blessed that there are so many options for us these days.
  16. “Drug-related deaths have grown to be a major US public health problem over the last two decades. Between 2006 and 2015 there were more than 515,000 deaths from drug overdoses.…” This from a March 26 article in Science Magazine. The death rate averages 5,722 per year over the cited period. Further, “the drug epidemic is a pressing concern among policymakers.” This concern translates to a $865 million research budget for the National Institute on Drug Abuse. This budget funds $151,117 per individual drug-related death. This year, 163,199 Americans are projected to die from lung cancer. The National Institute of Health Lung Cancer research budget for 2018 is $282 million. This level of research amounts to only $1,727 per individual death. Lung cancer kills 28 times more people per year than drug addition, but the drug addiction research budget is 87 times larger then lung cancer’s on a per-death basis. Clearly, our public health policy makers fail to understand the meaning of the word major. The major and largely unaddressed US public health problem is death from lung cancer. Stay the course. Tom Galli
  17. Most people are still under the misconception that lung cancer is only caused by cigarette smoking and therefore bring it on themselves and federal funding is minimal compared to funding for research of other cancers. It totally baffles me why their thinking isn't the same for drug use which is perpetrated for the most part by drug companies and doctors who are in bed together.
  18. I was fortunate to attend a Hope Summit a couple of years ago and came away just as impressed as you are.
  19. Will do, Tom and thank you Steff. Praying for the best for all of us!
  20. There is a website and Facebook page called ALK Positive Outreach. It is a closed group specifically for those who have been diagnosed with the ALK gene mutation. It is a very active group where you will find support, information and great people dealing with ALK positive lung cancer. This is the link to the Alk positive Facebook group registration form: https://tinyurl.com/alk-pos-reg-form
  21. I was on Xalkori for 29 months with no problems so I never had to take a break from it however, I did have progression and was switched to alectinib at that point.
  22. Update: After being on alectinib for 4 months here are the results of my first PET scan after beginning alectinib: 1. Previously identified focal area of hypermetabolic activity involving the pleura of the right middle lobe anteriorly has significantly decreased in hypermetabolic activity with max SUV of 2.6 compare to prior exam when it had a max SUV of 10.7. THERE IS NO SIGNIFICAN MEASURABLE MASS REMAINING! 2. Previously identified hypermetabolic activity involving the pleura of the right lung medially is NO LONGER VISUALIZED ON TODAY'S EXAM! 3. Stable hypermetabolic activity associated with pleural thickening in the apex of the right lung, which is not significantly changed compared to prior examination. I will take it!!!!
  23. Sorry, I have not heard about the study. I was on crizotinib for 29 months when I had some progression and was switched to alectinib which I have been on for 4 months now with great results.
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