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Everything posted by KatieB

  1. KatieB

    Need Tagrisso

    also, please reach out to the drug company as they have patient leads internationally that can offer you advice and assistance to getting their drug.
  2. KatieB

    Alecensa 150

    Hi there. I have reached out to the pharmaceutical company that makes this drug and found their patient lead for Lebanon. Please email her directly to see how they may help you. [email protected]
  3. https://www.global-patients.com/gp0674b-small-cell-lung-cancer-in-the-us/
  4. Bump- they need a couple more participants
  5. KatieB

    The CHRYSALIS Study

    Trial ID: NCT02609776 Condition: Non-Small Cell Lung Cancer Intervention: Parallel Assignment Study Type: Interventional Study Phase: I Study Sponsor: Janssen Research & Development, LLC Trial Start Date: May 24, 2016 Trial End Date: November 1, 2023 Participant Goal: 460 Age Group: 18+ years of age Gender: All Contact: [email protected] Study Summary: The CHRYSALIS Study is for adults with previously treated advanced non-small-cell lung cancer (NSCLC). The study is broken down into different parts and is specifically recruiting patients with NSCLC that have a documented primary MET Exon 14 skipping mutation. An investigational medication will be given to eligible participants to assess its the safety, tolerability, and anti-tumor activity. You may be able to take part in the study if you: · Are 18 years or older · Have been diagnosed with metastatic or unresectable NSCLC with a documented primary MET Exon 14 skipping mutation · Must have received prior treatment or declined currently available treatment. There are no limits on lines of prior treatment nor on the type of prior treatment. Patients are eligible post- chemo and post-MET TKI(s). Trial Eligibility Criteria: https://clinicaltrials.gov/ct2/show/NCT02609776?term=61186372EDI1001&draw=2&rank=1 Locations: https://clinicaltrials.gov/ct2/show/NCT02609776?term=61186372EDI1001&draw=2&rank=1
  6. “We currently have a study for patients who have been diagnosed with small cell lung cancer. We want to better understand the symptoms experienced by patients with small cell lung cancer and how those symptoms impact daily life. We are looking for people aged 18 and older have been with diagnosed small cell lung cancer and who have had chemotherapy. If you are a patient who qualifies and are interested in this study, you will be asked to participate in one or two 60-minute telephone or video interview. No medical treatment will be provided as part of this study. Eligible participants who participate in the interview will receive compensation of 150USD per interview for taking part.” https://www.global-patients.com/gp0674b-small-cell-lung-cancer-in-the-us/ We ask the participants to contact : [email protected]
  7. KatieB


  8. KatieB


  9. Join this event: Sign up here: https://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=966
  10. Orig article here: https://www.healthline.com/health/cancer/chemotherapy-cost#takeaway Chemotherapy, or chemo, is a form of drug therapy that destroys fast-spreading cancer cells. It’s used to treat cancer and reduce symptoms like pain. If you have a cancer diagnosis, your doctor might recommend chemo on its own or with other treatments. In either case, you’ll likely have a lot of questions, including how much chemotherapy will cost. Understandably, navigating these costs can be overwhelming. Any feelings you have are valid. It may help to learn about chemotherapy expenses before you begin treatment. This way, you can get a better idea of what to expect. In this article, we’ll explore the factors that can affect the cost of chemotherapy. We’ll also provide tips for managing the costs with or without health insurance. Average chemotherapy cost The cost of chemotherapy varies greatly. A major factor is health insurance. Generally, if you have health insurance, you can expect to pay 10 to 15 percent of chemo costs out of pocket, according to CostHelper.com. If you don’t have health insurance, you might pay between $10,000 to $200,000 or more. The total price of chemotherapy also depends on: Type of cancer. The type of cancer will determine what kind of chemo treatment you need. Stage of disease. Typically, treating early stage cancer costs less than advanced stage cancers. Number of treatments. The more doses you need, the more chemo will cost. Duration of treatment. The length of your treatment plan is also a factor. Type of chemotherapy. Chemo can be taken by mouth or intravenously. It can also be injected into the skin, artery, or tumor. Treatment setting. Depending on the type of chemo, you may receive it at home or in a clinic, office, or hospital. Geographic location. Chemotherapy costs are usually higher in areas with high living costs. Side effects. If you experience side effects due to chemotherapy, you may need additional treatment. This can increase the overall cost of chemo. How to pay for chemotherapy Most health insurance providers help cover cancer treatment. However, every insurance plan is different. The best way to know what your plan includes is to speak with your insurance provider. Insurance Health insurance may cover the following aspects of cancer treatment: Office visits One of the main components of cancer treatment is frequent checkups with specialists. This includes specialists like oncologists. In most cases, insurance providers partially cover the expense of each visit. You’ll be required to pay the remaining fee. Depending on your plan, the fee might be a dollar amount (co-pay) or percentage (co-insurance). Your copay or coinsurance might be listed on your health insurance card. Laboratory tests Your doctor might perform laboratory tests, like blood or urine tests, as part of cancer treatment. Typically, the fees for these tests are billed directly from the laboratory. Your insurance provider may cover part or all these costs. Imaging tests The group of healthcare professionals managing your care might use imaging tests to monitor your progress. This includes tests like: X-rays MRIs CT scans These tests might be partially covered by health insurance. Procedures and treatment There are several types of cancer treatment: Surgery. Your insurance may provide partial coverage. If your surgeon is not in-network, your insurance plan might not cover the procedure. Radiation. Similarly, your insurance provider might partially cover radiation treatments. Drug therapy. Your provider might also help pay for drug therapy, including chemotherapy. Usually, intravenous (IV) drugs are covered under your medical plan, while pills are covered by a separate pharmacy plan. Also, if you have to stay in the hospital, you might have to pay a fee per hospital admission or day. Medicare Medicare covers chemotherapy, plus other cancer treatments, according to Medicare.gov. Medicare Part A covers costs related to a hospital inpatient stay. Medicare Part B provides coverage for treatment in outpatient settings, like an office or clinic. Financial assistance If you don’t have health insurance, the following foundations can provide financial help: Cancer Financial Assistance Coalition Patient Access Network Foundation Patient Advocate Foundation ADVERTISING HEALTHLINE EVENT There is hope ahead Watch Lesley Stahl, Alyssa Milano, D.L. Hughley & more as they recount the past year and look ahead to the future. Watch our insightful and uplifting conversation on hope, vaccines, mental health & more. WATCH NOW Managing chemotherapy cost Consider these tips to help ease the stress of managing chemo costs: Choose in-network providers. When possible, visit in-network providers. Your health insurance may not cover visits out-of-network. Plan for out-of-network visits. If you prefer or need out-of-network care, call your insurance provider first to determine if these services can be covered. Get a full list of treatment needs. Ask your healthcare team for a list of proposed treatments. Call your insurance provider to see what’s covered. Call pharmacies in advance. If you’re taking drugs for side effects, shop around and call different pharmacies to find the best price. Explore alternatives. Ask your doctor if there are substitutions for your treatments that insurance is more likely to cover. Check if you need pre-approval. Some treatments need to be pre-approved or precertified by your health insurance. If you start them without pre-approval, you might need to pay the full cost. Check coverage for emergency care. Ask your provider what forms of emergency care they cover. This way, you’ll have an idea of what to expect if you need emergency services. Pay your health insurance premiums. Though it may be difficult to pay monthly fees, it’s important to avoid a lapse in health insurance. Paying your monthly premiums on time will ensure you always have insurance. Keep track of bills. Ask a trusted relative or friend to organize your bills, receipts, and insurance claims. This will help you manage money and resolve any future issues. Work with a counselor. A social worker or hospital financial counselor can help establish special payment plans with your treatment center. Seek financial assistance. Foundations like Cancer Financial Assistance Coalition, Patient Access Network Foundation,and Patient Advocate Foundation offer financial help for cancer treatment costs. Support programs for coping with chemotherapy cost Coping with cancer can be difficult, but you don’t need to do it alone. There are many programs that provide support and care for people with cancer. These groups can connect you to other individuals with similar experiences. You may be able to find cancer support groups at your local hospital or online. You can also search for programs in your area on the following websites: American Cancer Society CancerCare Friend for Life Cancer Support Community Takeaway The exact cost of chemotherapy is different for each person. It depends on many factors, including the stage of your disease, number of treatments, and the form of chemotherapy. In most cases, health insurance will partially cover these expenses. If you have questions, don’t hesitate to contact your healthcare team and insurance provider. The more you communicate your concerns and needs, the easier it will be to navigate the costs. If you need financial help, consider working with a hospital financial counselor or financial assistance programs. Last medically reviewed on April 1, 2021
  11. REPOSTING: We are looking for patients and caregivers of those who have been diagnosed with Small-Cell Lung Cancer (SCLC) to participate in confidential remote (online/telephone) research. The purpose of the study is to understand the experiences and challenges of those affected by SCLC. The information from this study will be used to increase understanding of the experience and the impact of the condition. The study is open to adult SCLC patients and/or their unpaid caregivers in the USA. Your name and personal information will be held strictly confidential. Compensation will be provided. If you are interested in participating or looking for more information on this research, please contact Kim Slusher via email or phone Email: [email protected] Phone: 980-677-1404 Ways to Participate: Minimum time commitment: 90 mins maximum time commitment: 2.5 hours (over 5 days)
  12. ****(Reposting this information. Please print the attachment if you'd like to discuss with your healthcareprovider) Title: A Phase 2 Multicenter Study of Autologous Tumor Infiltrating Lymphocytes (LN 145) in Patients with Metastatic Non-Small-Cell Lung Cancer: IOV-LUN-202 is a clinical study for patients with non-small cell lung cancer that has progressed after a single-line of therapy with chemotherapy + immunotherapy for their metastatic disease. Patients receive LN-145, a highly personalized immunotherapy developed from their own immune cells (tumor infiltrating lymphocytes; TIL) which are harvested from their tumor, expanded, reinvigorated, and infused back to the patient to target the tumor anywhere in the body. To learn more about the trial: • Call center – 866-565-4410 – select option 3 • Visit - https://www.iovance.com/clinical/iov-lun-202-non-small-cell-lung-cancer/ • Email - [email protected] • Clinicaltrial.gov - NCT04614103 NSCLC trial with TIL_2.26.21.docx
  13. ***reposting information about this trial. Please print off the attachments if you would like to discuss this with your healthcare provider) Title: A Phase 2 Multicenter Study of Autologous Tumor Infiltrating Lymphocytes (TIL) in Patients with Solid Tumors: IOV-COM-202 is a clinical study for patients with relapsed or refractory metastatic non-small cell lung cancer using LN-145 in combination with checkpoint inhibitors (e.g., Keytruda or Opdivo). LN-145 is a highly personalized immunotherapy, developed from a patient’s own immune cells (tumor infiltrating lymphocytes; TIL) which are removed from their tumor, expanded, reinvigorated, and infused back to the patient along with a check point inhibitor to target the tumor anywhere in the body. To learn more about the trial: • Call center – 866-565-4410 – select option 3 • Visit - https://www.iovance.com/clinical/immunotherapy-for-solid-tumors • Email - [email protected] • Clinicaltrial.gov - NCT03645928 Solid Tumor Trial with Lung Cohorts_2.25.21.docx
  14. Definitely let the oncologist know. Immunotherapy may have a cumulative effect or it may be completely unrelated. He may order a scan just to be certain and that would give you some peace of mind- not to mention address that side effect. Wishing your mom the best. Please keep us posted!
  15. Reposting this opportunity created by lung cancer survivor and MD, Dr. Morhaf Achkar. "LUNG CANCER AMONG BLACK AMERICANS We invite you to be part of a research study about the lung cancer experiences of Black/African Americans. This study is being conducted by Morhaf Al Achkar and his collaborators. The goal is to understand the racial health disparity related lung cancer diagnosis. Please consider study participation if you are a Black/African American person with lung cancer. Caregivers, healthcare providers and community advocates for Black/African American patients with lung cancer are also invited to participate. The study consists of interviews, focus groups, and surveys, 6-12 months apart. Some participants may be asked to send photos or videos as well as record reflections with loved ones or other people involved in their cancer care. Some may also be asked to submit personal writings, such as journals. Some of the interviews and focus groups will be led by community members and some by researchers. This is an IRB approved study and IRB documentation is attached to the invite study email. If you choose to participate, you will be paid $50 for each interview or focus group, $25 for each survey, $25 for prompted conversations with caregivers and $5 for submission of artwork, writings or videos. The same amount will be paid for each follow up data collection instance. If you would like more information about this study, please call (206)-809-0311 or email [email protected] Agreeing to be contacted or a request for more information does not require you to participate in this study. Please complete the following eligibility survey and select your interview/focus group availability times here": https://www.surveymonkey.com/r/3BNKGBP
  16. HI, Please see the information attached on two new trials to discuss with your doctor - Mariposa_PAG Clinical Trial_09Feb21.pdf PapIllon_PAG Clinical Trial 09Feb21.pdf
  17. Pregnancy and Lung Cancer Researchers at the University of Colorado Anschutz Cancer Center are collecting patient experiences related to being diagnosed with and/or treated for lung cancer while pregnant, being diagnosed shortly after giving birth, or considering becoming pregnant while on a TKI. At present oncologists and obstetricians have little data on these topics to offer their patients. Patients need more information to make decisions that balance the relative risks to both lives at stake. If you have had any the experiences mentioned above, you can help yourself and others learn more about pregnancy and lung cancer. Please contact [email protected] to share your information.
  18. Ph I/II trial evaluating our KRAS G12C inhibitor, MRTX 849 as monotherapy & in combination with other agents in NSCLC and other tumors. https://www.clinicaltrials.gov/ct2/show/NCT03785249 Sapphire study. Ph III comparing sitravatinib+nivolumab vs. docetaxel in NSCLC patients who progressed on prior PD-1/PD-L1 based therapy https://www.clinicaltrials.gov/ct2/show/NCT03906071
  19. The VA Has Embraced Artificial Intelligence To Improve Veterans' Health Care https://www.scpr.org/news/2020/04/17/92010/the-va-has-embraced-artificial-intelligence-to-imp/ Inside a laboratory at the James A. Haley Veterans' Hospital in Tampa, Fla., machines are rapidly processing tubes of patients' body fluids and tissue samples. Pathologists examine those samples under microscopes to spot signs of cancer and other diseases. But distinguishing certain features about a cancer cell can be difficult, so Drs. Stephen Mastorides and Andrew Borkowski, decided to get a computer involved. In a series of experiments, they uploaded hundreds of images of slides containing lung and colon tissues into artificial intelligence software. Some of the tissues were healthy, while others had different types of cancer, including squamous cell and adenocarcinoma. Then they tested software with more images the computer had never seen before. "The module was able to put it together, and it was able to differentiate, 'Is it a cancer or is it not a cancer?'" Borkowski said. "And not only that, but it was also able to say what kind of cancer is it." The doctors were harnessing the power of what's known as machine learning. Software pre-trained with millions of images, like dogs and trees, can learn to distinguish new ones. Mastorides, chief of pathology and laboratory medicine services at the Tampa VA, said it took only minutes to teach the computer what cancerous tissue looks like. The two VA doctors recently published a study comparing how different AI programs performed when training computers to diagnose cancer. "Our earliest studies showed accuracies over 95 percent," Mastorides said. AI software was able to differentiate between benign colon tissue (left) and cancerous tissue (right). It was also able to determine the type of colon cancer. Enhance, not replace The doctors said the technology could be especially useful in rural veterans clinics, where pathologists and other specialists aren't easily accessible, or in crowded VA emergency rooms, where being able to spot something like a brain hemorrhage faster could save more lives. Borkowski. the chief of the hospital's molecular diagnostics section, said he sees AI as a tool to help doctors work more efficiently, not to put them out of a job. "It won't replace the doctors, but the doctors who use AI will replace the doctors that don't," he said. The Tampa pathologists aren't the first to experiment with machine learning in this way. The U.S. Food and Drug Administration has approved about 40 algorithms for medicine, including apps that predict blood sugar changes and help detect strokes in CT scans. The VA already uses AI in several ways, such as scanning medical records for signs of suicide risks. Now the agency is looking to expand research into the technology. The department announced the hiring of Gil Alterovitz as its first-ever Artificial Intelligence Director in July 2019 and launched The National Artificial Intelligence Institute in November. Alterovitz is a Harvard Medical School professor who co-wrote an artificial intelligence plan for the White House last year. He said the VA has a "unique opportunity to help veterans" with artificial intelligence. As the largest integrated health care system in the country, the VA has vast amounts of patient data, which is helpful when training AI software to recognize patterns and trends. Alterovitz said the health system generates about a billion medical images a year. He described a potential future where AI could help combine the efforts of various specialists to improve diagnoses. "So you might have one site where a pathologist is looking at slides, and then a radiologist is analyzing MRI and other scans that look at a different level of the body," he said. "You could have an AI orchestrator putting together different pieces and making potential recommendations that teams of doctors can look at." Alterovitz is also looking for other uses to help VA staff members make better use of their time and help patients in areas where resources are limited. "Being able to cut the (clinician) workload down is one way to do that," he said. "Other ways are working on processes, so reducing patient wait times, analyzing paperwork, etc." Barriers to AI But Alterovitz notes there are challenges to implementing AI, including privacy concerns and trying to understand how and why AI systems make decisions. Last year, DeepMind Technologies, an AI firm owned by Google, used VA data to test a system to predict deadly kidney disease. But for every correct prediction, there were two false positives. Those false results may cause doctors to recommend inappropriate treatments, run unnecessary tests, or do other things that could harm patients, waste time, and reduce confidence in the technology. "It's important for AI systems to be tested in real-world environments with real-world patients and clinicians, because there can be unintended consequences," said Mildred Cho, the Associate Director of the Stanford Center for Biomedical Ethics. Cho also said it's important to test AI systems with a variety of demographics, because what may work for one population may not for another. The DeepMind study acknowledged that more than 90 percent of the patients in the dataset it used to test the system were male veterans, and that performance was lower for females. Alterovitz said the VA is taking those concerns into account as the agency experiments with AI and tries to improve upon the technology to ensure it is reliable and effective. This story was produced by the American Homefront Project, a public media collaboration that reports on American military life and veterans. Funding comes from the Corporation for Public Broadcasting.
  20. We need to hear from you!! “Are you worried about your lung cancer treatment and participating in clinical trials during #COVID19? If you live in the United States, please share your concerns with us so we can start to address them.” https://www.surveymonkey.com/r/COVID19_LC_treatment_clinical_trials
  21. its 75 today after some gloomy rainy days... I'm enjoying all the fun jokes and good news I'm seeing online this week. I hope all of you are doing well.
  22. I love this idea! And I love Oxford! I had a beloved Yorkie too (RIP) Here is my furry brood.
  23. KatieB

    COVID 19 shopping

    HI Folks. As someone who is immune compromised and on a clinical trial- I am a big germaphobe !! That said, we need to temper the hype and panic with the actual facts. I travel across the country for my job (that's not stopping) and I just try to remain vigilant during this time of year to keep healthy! If you're feeling ill or worried about going into crowds where others may be ill, do your shopping during slow peaks and buy in bulk so that you limit your time around crowds and potential illness. Experts recommend practicing the same safety advice we have been given during flu-season. So, what should we do? Members of LUNGevity’s Scientific Advisory Board recommend basic public health measures such as staying home when ill, handwashing with soap and water (or using a hand sanitizer), and respiratory etiquette including covering the mouth and nose during sneezing and coughing. If you feel any flu-like symptoms, please visit your healthcare provider. While the risk of contracting the virus remains low within the United States, everyone is advised to exercise judgement when making travel plans. Please check with your doctor before making international travel plans. Even though the chances of a local outbreak remain low, the CDC urges everyone to take precautions against potentially contracting the new virus: Avoid close contact with people who are sick. Avoid touching your eyes, nose, and mouth. Stay home when you are sick. Cover your cough or sneeze with a tissue, then throw the tissue in the trash. Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe. Follow CDC’s recommendations for using a facemask: CDC does not recommend that people who aren’t sick wear facemasks to protect themselves from respiratory diseases, including COVID-19. Facemasks should be used by people who show symptoms of COVID-19 to help prevent the spread of the disease to others. The use of facemasks is also crucial for health workers and people who are taking care of someone in close settings (at home or in a health care facility). Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom, before eating, and after blowing your nose, coughing, or sneezing. If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol. Always wash hands with soap and water if hands are visibly dirty. Here's a great article I read when I was on the airplane: xoxo KatieB
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