Patient Advocacy

Red Flags   * It cures ALL cancers (as if it was one disease) and other diseases. * It's based on a theory but not an actual test of the theory - a clinical trial. * It’s "natural" it has no side effects. * A conspiracy (greed / profit ..) explains why it isn’t prescribed by your doctor * It’s only available in a country that lacks medical regulations. * You can buy it online - without a doctor's prescription. * There’s only one group or person promoting it. * The "evidence" of benefit  is cherry-picked and based on test tube / animal experiments * The claim has not been tested in people – in predefined controlled clinical trials * It is said to “boost the immune system”   (without defining this or providing clinical evidence showing this is effective) * It relies on testimonials Red Flags and Free Speech - a more detailed narrative: While eating well and regular exercise will not cure or treat cancer, these CAN impro...

 Karl Schwartz artist & advocate for patients, democracy, and the planet  Give Thanks To the sun that also rises The moon that guides the path of deer Breakfast and the silence of the morning The pock and pong of the paddle Chasing fleeting beauty and truth That we can contemplate the tragic history of men Our possible and avoidable futures Our dear life-long and new friends To Family The long odds against any of this. Artist BA - RIT | BFA - Maryland Institute of Art | MFA - Brooklyn College Paintings  | Figurative Drawings Patient Advocacy Previously Patient representative to FDA (Advisory Committee) President and founder - Patients Against Lymphoma Member - NCI Centralized Institutional Review Board - adult early phase cancer research Member - NCI Steering Committee, Co-chair NCI Patient Advocate Committee Member: AACR Joint Scientific Advisory Committee - Stand Up to Cancer Faculty - AACR/ASCO Methods in Clinical Cancer Research Workshop  Lymphoma Topics Pat...

The Problems with Testimonials as Medical Communications   "testimonials seem to affect recipients' decisions and intentions... if they are vivid and come from a person who is much like the recipient with whom the recipient can identify (Dillard and Main, 2013).  Testimonials by lay persons are similar to case reports by physicians, each are based on observations. "For centuries doctors used leeches and lancets to relieve patients of their blood. They KNEW bloodletting worked. EVERYBODY said it did. When you had a fever and the doctor bled you, you got better. EVERYONE knew of a friend or relative who had been at death’s door until bloodletting cured him. Doctors could recount thousands of successful cases." ~ unknown attribution Bloodletting is largely discounted in modern medicine based insights into the biology of diseases. It was still used in the 1920s because it was believed to help cure a variety of ailments, including cardiac problems (Humors theory). ... It ...

Karl Schwartz, @Lymphomation  Caregiver and patient advocate Formerly: Patient representative to FDA (ODAC) President of Patients Against Lymphoma CIRB member - adult early phase research NCI Steering Committee, Co-chair NCI Patient Advocate Committee Faculty - AACR/ASCO Methods in Clinical Cancer Research Workshop at Vail   My full advocacy CV Lymphoma simplified Guidelines at Diagnosis   The Problems with Testimonials Reporting Symptoms & Side Effects Red Flags & Free Speech - Identifying bogus information Citizens Petition to FDA to require or urge Quality of Life comparisons in clinical trials <a rel="me" href="https://mastodon.social/@lymphomation">Mastodon</a>

 For the Newly diagnosed This topic is for anyone who has just been diagnosed - or just prior to the diagnostic evaluation.  It is also for caregivers -- loved ones who will help the loved to navigate the diagnosis, treatments, and the related decisions to be made. A lymphoma can be a serious disease, but it is also  effectively treatable even at a very advanced stage. Some types of lymphoma are readily cured, other types can be managed well as needed. The rarer sub types require more attention than most diseases since experience and therefore expertise is less common, so you may need to get more involved with your diagnosis (seeking a second evaluation) and treatment (considering clinical trials) and also seek an expert at a major academic institution to work with your treating physician. For the indolent lymphomas it can be more likely that you will die with the lymphoma than from it. So let's get started on your new study project. Here are the steps we recommend you...

Lymphoma Simplified - how it begins Our body is made of countless cells of many types. Cells have specialized jobs and names, such as skin, nerve, heart, lung, blood, immune cells, and so on. For the human body to function normally, each organ must have a certain number of cells. ...By design, the cells in most organs have a short lifespan. Therefore, to continue functioning the body needs to replace lost cells by the process of cell division. ...Cell division and cell death are controlled by genes that are located in the cell nucleus. Genes function like an instruction manual telling the cell what proteins to make. These proteins in turn control the behavior of the cell. ...Some proteins direct the cell to divide; others how long it will live; and others begin cell death - a normal process by which the body rids itself of old, unneeded, or damaged cells. Under normal conditions there is a balance in which new cells replace old, and each cell carries out tasks specific to its...