“Have you reviewed your medical records? You should”
Kidney Cancer Education - Peggy Zuckerman
by peggyzuckerman@gmail.com
3y ago
…and I’m not alone in saying this.  Often I am a voice in the wilderness, asking/demanding that we all have easy and complete access to our health records–all of them and as soon as they are created.  This article posted by Pinnacle Care sites multiple reasons why.   Get your records, read them, make sure they are correct, and that they really ARE your records.  Look through the medication lists; read those imaging reports, get the details of your diagnosis, and let your family know where your copy is stashed.  Important stuff for all. PinnacleCare November 13 ..read more
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Patient ToolKit–Prepare for your doctor appointment
Kidney Cancer Education - Peggy Zuckerman
by peggyzuckerman@gmail.com
3y ago
Patient_Toolkit_v4A_Fillable Format The Patient’s Toolkit for Diagnosis prepares patients for medical appointments. We patients know that being engaged in our care helps figure out a “working diagnosis”. That “working diagnosis” may change as more information is gathered.  We recognize that a diagnosis can be certain or uncertain.  But communication between patients and medical providers leads most efficiently to the most accurate diagnosis. The Toolkit help the patient be part of this process.  As you fill out the form, think through the problems which concern you. Then yo ..read more
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Is the Cheapest Medication the Best for YOU? Or is the Best Medication Cheaper in the Long Run?
Kidney Cancer Education - Peggy Zuckerman
by peggyzuckerman@gmail.com
3y ago
kidney cancer ▼ Started by Peggy Z  Imagine hearing from your doctor that you must, “Fail first on this cheaper drug. Then I can prescribe a carefully chosen treatment.” In January of 2019, new Medicare Advantage prescription rules change. Cleverly called “step therapy”, this is a step backwards for our RCC friends with MA plans, undermines the autonomy of doctors, limits timely access to approved medications and may shorten lives of patients given ineffective medication. “Step therapy” takes treatment recommendations from the doctor and gives it to the bookkeepe ..read more
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What Do You Mean “No Nephrectomy?” An ASCO Study to Question & Answer
Kidney Cancer Education - Peggy Zuckerman
by peggyzuckerman@gmail.com
3y ago
The headlines announced (or pounced upon) a study from ASCO (American Society Clinical Oncologists), with MedScape’s 6/2/2018 example: “In Advanced Kidney Cancer, Surgery No Longer Sole Standard of Care”. Is there value to surgery in advance of treatment with Sutent(sunitinib) for the patient with metastatic clear cell carcinoma? The study author,  Dr. Arnaud Mejean from France claimed, “Cytoreductive nephrectomy should no longer be consider the standard of care in metastatic renal cell carcinoma.” My own doctor said it, “flips the existing paradigm” of treatment.  Typically, a patie ..read more
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ABSTRACT from ASCO & Impact for Patients: “Alterations in key clear cell renal cell carcinoma (RCC) genes to refine patient prognosis”
Kidney Cancer Education - Peggy Zuckerman
by peggyzuckerman@gmail.com
3y ago
This abstract title reflects important changes about kidney cancer. It is not about “kidney cancer”, but clear cell RCC, with a  focus on changes or genomic alterations (GAs) in the genes.  The study goal was to see if patient the prognosis related to those GAs in genes that are found in RCC.  It describes ccRCC in a very detailed way–as to its gene expressions/changes.  (Abstract and Take-Home messages from Dr. Monty Pal are found below, with my comments to follow. Session: Genitourinary (Nonprostate) Cancer Saturday June 2, 8:00 AM–11:30 AM 4516 (http://abstracts.asco.org ..read more
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Clinical Trial for NEWLY DIAGNOSED–Surgery Now or Later with an Immune Therapy Option
Kidney Cancer Education - Peggy Zuckerman
by peggyzuckerman@gmail.com
3y ago
Kidney cancer patients are stunned by their diagnosis, anxious to make a treatment decision, and  simply not know what to expect.  If you are struggling with the issue of surgery to remove the tumor/kidney or to start with a med, you need to read this.  Deb Maskens, Kidney Cancer Patient and Patient Advocate, our guest writer is a valued member of our disease community and currently serves on the Renal Task Force for the National Cancer Institute.  A series of links below will also be helpful.  (My extra comments will be in italics, like this. )Welcome aboard, Deb ..read more
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Genetic Differences in Kidney Cancer? So What or What’s UP?
Kidney Cancer Education - Peggy Zuckerman
by peggyzuckerman@gmail.com
3y ago
A few years back, I attended a kidney cancer conference with a highly eminent kidney cancer doctor.  He opened his talk by saying he was no longer treating kidney cancer!  The room was stunned, patients already wondering where to go for the next appointment when he finished his statement. “From now on, I will be treating cancers of the kidney.” Not a small distinction, and a great way to confuse the patient and the newly diagnosed, but is critical. Just because some growth lands in the kidney, that growth is not the same person to person, and even not from kidney to kidney ..read more
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New “NEWS!” for Non-Clear Cell re NIVO or NOT? Limited data or a light along the way?
Kidney Cancer Education - Peggy Zuckerman
by peggyzuckerman@gmail.com
3y ago
With the headline, “Nivolumab Shows a Substantial Objective Response Rate in Refractory Non-Clear-Cell Renal Cell Carcinoma”, the article should be welcome to all of those in the  in the non clear cell RCC world.  Clear cell  is the most common, the garden variety of renal cell carcinoma.  This is welcome news, as the non clear cell patients get very little attention from the research world. Though the patient with nccRCC might interpret this as, “Good news! Now that they know what to do for me!” , it is just not the case.  Rarely is the news all that good or all ..read more
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“Predicting Short Survival” article: A Self-fulfilling Prophecy for the Newly Diagnosed
Kidney Cancer Education - Peggy Zuckerman
by peggyzuckerman@gmail.com
3y ago
I thought I had seen enough articles which concentrated on the stats of how poorly kidney cancer patients did, but then, this one came along from Norway.  “A Three-Variable Model Predicts Short Survival in Patients with Newly Diagnosed Metastatic Renal Cell Carcinoma”, just published in 2017, it is shocking and may create barriers to proper care for patients.  The title might have been more accurately titled something like, “How We Fail to Find Kidney Cancer, Therefore Dooming Many to an Unnecessarily Efficient Death”. Maybe it especially bothers me, in that I have come to expec ..read more
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Kidney Tumors & Diagnosis? Size Matters–Big Surprise
Kidney Cancer Education - Peggy Zuckerman
by peggyzuckerman@gmail.com
3y ago
Kidney cancer is generally a very silent disease. It is sneaky, hides out for years, and is often assumed to be something else.  In my case, my doctor essentially decided I was just a menopausal women with the ever-popular “stress” as a an extra.  The stress of carrying about a 10 cm tumor and wasting away  was probably part of it. That slow diagnosis, often delayed for years is far too typical.  Only the greater use of CT scans has been significant in finding kidney cancer at an early stage. And just what is early or small? Looking for a cracked rib, or the dislo ..read more
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