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Cheryncp123

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Posts posted by Cheryncp123


  1. 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.


  2. 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


  3. 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.

     


  4. 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.


  5. 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.


  6. 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.


  7. 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.


  8. “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


  9. 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   

    Alk positive.jpg


  10. 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!!!!

     


  11. A "squeaky" voice was one of several symptoms that led to my diagnosis in the first place. I was found to have a gene mutation and was started on an oral targeted therapy drug that shrunk the tumor and as it did the squeaky voice went away. Eventually the effectiveness of the drug began to wear off and my symptoms returned including my squeaky voice, my oncologist switched me to another targeted therapy drug and as it began shrinking the tumor my squeaky voice went away again. It has been a good indicator of how my cancer is behaving. I am not sure if there is any treatment for the voice problem outside of dealing with the tumor that is causing it.

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