Understanding Diagnostic Technologies and Biomarkers

This podcast was originally published by Cancer Care on May 6, 2015, here.

Topics Covered

 

  • Why the Molecular Portrait of Cancer is Important
  • The Role of the Pathologist
  • Benefits of Diagnostic Technologies, Biomarkers, Precision Medicine and Predicting Response to Treatment
  • Clinical Trials: How Research Contributes to Your Treatment Options
  • Questions to Ask Your Health Care Team
  • Quality-of-Life Concerns
  • Questions for Our Panel of Experts

 

Our Panel of Experts

Richard J. Gralla, MD, FACP

Professor of Medicine, Albert Einstein College of Medicine

Al B. Benson, III, MD, FACP, FASCO

Professor of Medicine, Associate Director for Clinical Investigations, Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Sarah E. Kerr, MD

Senior Associate Consultant, Division of Anatomic Pathology, Department of Laboratory Medicine and Pathology, Assistant Professor, Laboratory Medicine and Pathology, Mayo Clinic

Charles L. Loprinzi, MD

Regis Professor of Breast Cancer Research, Mayo Clinic College of Medicine

Caroline Edlund, MSW

Online Support Group Program Director, CancerCare

Prostate Imaging

This resource was originally published by the Prostate Cancer Research Institute here.

TRANSCRIPT:

“So your PSA number came back high. What now?”

Let’s say, like many men,  you’ve been getting your PSA checked every year as part of your routine checkup. In the past it has always hovered around 2 or maybe as high as 3.0, and suddenly it’s up to 5! Or maybe this is your first PSA test. Everyone knows that 4.0 is the magic number, anything above that means something is not right with your prostate. Right? Actually, it’s a lot more complicated than that, but for this video we’ll take that as a given. OK, so the number is high, what do you do? Well, if you’re like many men your first instinct might be something like this…

“Aaaah,  I’ve got prostate cancer! Cut the *****ing thing out”!

Unfortunately, there are a bunch of people in the medical community that will support and even encourage that instinct. It’s the wrong instinct.

Wait.

Slow down.

Take a deep breath.

Now just to be clear, this video is not advocating any sort of wonder-cure and we’re not downplaying how serious prostate cancer can be. Everything we’ll talk about here is backed up by good science, the latest technology, and highly trained medical professionals.

Let’s stop and talk for a second about the prostate. No offense to our creator, or to evolution or whatever you believe about human origins, but you couldn’t find a worse place to situate an organ, especially one that can be prone to problems. It’s…”down there”. And it’s in the middle of everything “down there”. Your urethra, that tube that carries urine out from the bladder, runs right through it… as do a couple of nerve bundles that control your ability to get and maintain an erection. And its located right in there close to the rectum. So, right in the middle of three really important systems.

OK. Back to your story. You’ve got the high PSA number. What’s likely to happen now?

Your general practitioner is probably going to want to refer you to a urologist. The urologist is almost certainly going to want to perform a needle biopsy and usually right away. It’s cancer! There’s urgency! Right?  Ummm. Not really. But we’ll get to that in a future video. For now, just know that for the overwhelming majority of men prostate cancer is very slow growing. You have time.

Here’s your first step in taking control. That’s what this is all about. Taking control of your own healthcare.

Unless your PSA number is crazy high (above 20 for example) or your GP has felt that something is wrong during the Digital Rectal Exam or DRE (that’s the finger up your butt exam that we all adore), you need to tell him or her that you want another PSA test. You see, that test measures a substance in the blood that the prostate gives off when it’s aggravated, and it can be aggravated by quite a few things other than cancer. Sexual activity, inflammation, certain types of heavy lifting, even riding a bike. So you’ll want to wait a few weeks, take it easy for the last few days, refrain from sex for 48 hours (you can do it), and retake the test. If your number has gone back down to near its normal level, you’re done for now. Just make sure to keep getting those yearly PSA tests and DREs.

If it remains high, then its time to move to the next step. Biopsy, right?

Nope. Not if you can help it.

The random needle biopsy, as it’s called, involves sticking a rather large needle into the area just in front of the rectum 12 times to remove samples, called cores, from different areas of the prostate.

It sounds horrible but, to be honest, it’s not terribly painful and it’s usually over in 10 or 15 minutes. A visit to the dental hygienist is probably just as uncomfortable. But it is invasive. Three percent of the men undergoing needle biopsies get infections, some of which are very serious. More importantly though, is the fact that the random needle biopsy is not very accurate. It can miss serious cancer or it can pick up low level, non-aggressive cancers that really don’t require treatment. (We’ll talk about the types of prostate cancer in a future video.)

The doctors who use the random needle biopsies don’t do it because they are mean or ignorant…maybe just a little slow to change. Until the last couple of years the needle biopsy was the best diagnostic tool that we had. Recent advances in MRI imaging have changed everything. The latest generation of MRI machines called 3 Tesla, or 3T machines, scan at a much higher resolution than the earlier machines. They enable radiologists to see all but the tiniest tumors. The tumors that they can’t see almost certainly don’t matter.

What improvements in imaging mean is that biopsies, when they are needed, can be targeted, right to the suspicious area in the prostate. No more random poking.

So, to summarize. If your PSA number comes back high:

Schedule a second PSA test.
Start doing some research. A good place to start is PCRI.org.
If the number is still high after that test, find an MRI center that does “Multi-parametric” testing using a 3T scanner. The MRI report will provide two types of important information:

The MRI measures the size of the prostate. The scan report will enable you to determine if your PSA elevation is proportionate to your prostate size. We’ll talk about this more in a future video. As regards cancer,  there are three possible outcomes:

No high-grade cancer. Further monitoring without biopsy is OK.
A high-grade lesion is detected.  Targeted biopsy is needed.
An ambiguous area is detected.  Another MRI in 6 months may be appropriate.

Scanning the prostate in men with PSA elevation is a brand new approach that is more reliable than the old-fashioned method of using 12 random needle sticks. However, this claim is only accurate when using the very latest state-of-the-art MRI technology at approved centers. This technology is so new that finding doctors willing to abandon the old random needle biopsy approach is still a major challenge.  Even so, there is a big payoff, being able to bypass those needles, those infections, and the inaccuracy is worth it.

Living with a Myeloproliferative Neoplasm

This video was originally published by Cancer Support Community on May 26, 2015, here.

 

First New Treatment in a Decade for MF Patients

This blog was originally published by PV Reporter on August 16, 2019, bDavid Wallace, here.

INREBIC provides new, once-daily oral option for patients affected by rare bone marrow cancer

SUMMIT, N.J.–(BUSINESS WIRE)–Celgene Corporation (NASDAQ: CELG) today announced the U.S. Food and Drug Administration (FDA) has approved INREBIC® (fedratinib) for the treatment of adult patients with intermediate-2 or high-risk primary or secondary (post-polycythemia vera or post-essential thrombocythemia) myelofibrosis.1

Celgene Fedratinib FDA approved for Myelofibrosis“The approval of INREBIC is another important milestone for Celgene and underscores our commitment to people living with blood cancers,” said Jay Backstrom, M.D., M.P.H., Chief Medical Officer for Celgene.  “We are excited to provide INREBIC as a new treatment option that may be used in patients with myelofibrosis, including patients previously treated with ruxolitinib.”

“Myelofibrosis can cause patients to suffer in many ways, including experiencing debilitating symptoms,” said Ruben Mesa, M.D., FACP, Director of the Mays Cancer Center at UT Health San Antonio Cancer Center MD Anderson.  “There has not been a new treatment approved for this disease in nearly a decade.  With INREBIC, physicians and patients now have another option available for myelofibrosis.”

The INREBIC development program consisted of multiple studies (including JAKARTA and JAKARTA2) in 608 patients who received more than one dose (ranging from 30 mg to 800 mg),1 of whom 459 had myelofibrosis,1 including 97 previously treated with ruxolitinib.1 The JAKARTA study evaluated the efficacy and safety of once-daily oral doses of INREBIC compared with placebo in patients with intermediate-2 or high-risk, primary or secondary (post-polycythemia vera or post-essential thrombocythemia) myelofibrosis who were previously untreated with a JAK inhibitor, had enlarged spleens (a condition known as splenomegaly), and had a platelet count of ≥50 x 109/L (median baseline platelet count was 214 x 109/L; 16% <100 x 109/L and 84% ≥100 x 109/L).1,2 In the JAKARTA study, spleen volume was reduced by 35% or greater, when assessed from baseline to the end of cycle 6 (week 24), with a 4-week follow-up scan, in 37% (35 of 96) of patients treated with INREBIC 400 mg versus 1% (1 of 96) of patients who received placebo (p<0.0001).1 INREBIC also improved the Total Symptom Score as measured by the modified Myelofibrosis Symptoms Assessment Form (MFSAF) v2.0 diary2 (night sweats, itching, abdominal discomfort, early satiety, pain under ribs on left side, bone or muscle pain) by 50% or greater when assessed from baseline to the end of cycle 6 in 40% of (36 of 89) patients treated with 400 mg, versus 9% (7 of 81) of patients who received placebo (p<0.0001).1

Click Here for more details

PV Reporter was the first to report Fedratinib by Celgene, offered on Expanded Access Program for Myelofibrosis patients in November, 2018.

 

MPN Resources

These resources were originally published by MPN Cancer Connection here.

Resources

One of the first recommendations for the newly diagnosed is to see an MPN Specialist. This also applies to patients who have never seen an MPN Specialist. Financial difficulties can make this a difficult task. Before you begin treatment, patients and caregivers should meet with a financial counselor at the facility providing treatment. The counselor will assist in determining coverage and estimate out of pocket expenses. You might also consider an Oncology Nurse Navigator who helps provide support services, coordinates elements of care and helps you learn about additional cancer resources.

Connect with Myeloma Groups

This resource was originally published by Myeloma Crowd here.

CONNECT WITH THE MYELOMA CROWD

Myeloma Crowd is a division of the CrowdCare Foundation and is a registered 501(c)3 non-profit, tax ID 45-5354811. Contact us at info@crowdcare.org. For donations, please donate online to the MCRI project here or mail checks to:

CrowdCare Foundation
PO Box 1286
Draper, UT 84020

 

JOIN MYELOMA FACEBOOK GROUPS

MULTIPLE MYELOMA SPANISH SITE

Financial Assistance Programs

These resources were originally published by Myeloma Crowd here.

Financial Resources

Before starting treatment, patients and their caregivers should meet with the financial counselor at the facility where they will be treated. Each hospital will have its own financial counselor within each specific clinic (like the myeloma clinic or myeloma/lymphoma clinic). The counselor will help determine coverage and estimate out of pocket costs. There may be restrictions on treatment options covered by Medicare and Medicaid. After you have met with the counselor, the resources below can help bridge financial gaps.

Myeloma advocate and financial planner Diahanna Valentine helped compile this list of helpful financial resources. To contact Diahanna for professional assistance, email her at dtvallentine@gmail.com

Pharmaceutical Company Patient Assistance Programs

Amgen Assist 360  (1-800-28-AMGEN) (Kyprolis, Xgeva, Neupogen, Neulasta)

BMS Access Support (1-800-861-0048) (Empliciti)

Celgene Patient Support (1-800-931-8691, EXT 4077(Revlimid, Pomalyst, Thalomid)

Genentech  (1-888-941-3331) (Venclexta)

(800-609-1083) (Doxil, Darzalex)

Novartis Patient Assistance (1-800-245-5356) (Farydak, Zometa)

Takeda Oncology (1-844-817-6468) (Ninlaro, Velcade)

Other Patient Assistance Programs

Be The Match (Post-transplant financial assistance)

CancerCare

CephalonCares Foundation

HealthWell Foundation

Help with Paying Bills

The Leukemia & Lymphoma Society’s Co-pay Assistance Program

Patient Financial Aid

The Max Foundation

National Cancer Institute

National Organization for Rare Disorders

NeedyMeds

Patient Access Network Foundation

Patient Advocate Foundation

Patient Advocate Foundation Co-Pay Relief Program

Ronald McDonald House Charities

Basic Living Expenses

American Childhood Cancer Organization

American Life Fund
The Bone Marrow Foundation

The CHAIN Fund Inc

Child Care Expenses

Family Reach Foundation

The Bone Marrow Foundation

CancerCare

Equipment /Supplies Expenses

American Kidney Fund

CancerCare

Lymphoma Research Foundation

Stupid Cancer

Government Assistance

Benefits.gov

Centers for Medicare & Medicaid Services

Eligibility.com (Medicare Resources)

Legal Services Corporation

Social Security Administration

Social Security Disability Resource Center

U.S. Department of Veterans Affairs

Home Health Care Assistance

AVON Foundation for Women

The Bone Marrow Foundation

CancerCare

Brenda Mehling Cancer Fund

Stupid Cancer

Housing During Treatment

American Cancer Society (Hope Lodges)

The Bone Marrow Foundation

Healthcare Hospitality Network Inc

Hospitality Homes

Joe’s House

Lymphoma Research Foundation

Insurance Premium Expenses

American Kidney Fund (dialysis patients)

American Life Fund

The Bone Marrow Foundation

CancerCare Co-Payment Assistance Foundation

The CHAIN Fund Inc

Fifth Season Financial Assistance

HealthWell Foundation (diagnosis-specific)

Patient Advocate Foundation Co-Pay Relief

Patient Services, Inc

Stupid Cancer

Legal Issues

American Bar Association

Cancer and Careers

Cancer Legal Resource Center

LawHelp.org

Legal Services Corporation

National Coalition for Cancer Survivorship

National Health Law Program(links to assistance programs)

Patient Advocate Foundation

Social Security Disability Resource Center

Medical Care Expenses

American Life Fund

Be the Match

The Bone Marrow Foundation

CancerCare

Cancer Warrior, Inc

Fifth Season Financial Assistance

Foundation for Health Coverage Education

Leukemia and Lymphoma Society

Patient Access Network Foundation

Patient Advocate Foundation

Post-Treatment Financial Needs

Be The Match

Stupid Cancer

Prescription Expenses

The Bone Marrow Foundation

CancerCare Co-Payment Assistance Foundation

Cancer Financial Assistance Coalition

The CHAIN Fund Inc

Foundation for Health Coverage Education

GoodDays

HealthWell Foundation

The Leukemia & Lymphoma Society

Needy Meds

Patient Access Network Foundation

Patient Advocate Foundation Co-Pay Relief

RxAssist

RxHope

RxOutreach

Together Rx Access

Transportation and Travel Resources

Angel Flight

Air Charity Network

American Cancer Society (Road to Recovery)

Angel Airline Samaritans

Angel Airlines for Cancer Patientsrg

Angel Flight Central

CancerCare

Chai Lifeline

Corporate Angel Network

Family Reach Foundation

Lifeline Pilots

Lymphoma Research Foundation

Mercy Medical Angels

National Patient Travel Center

Veterans Airlife Command

Know What Your Doctors Know: Multiple Myeloma

This video was originally published by the National Comprehensive Cancer Network on April 15, 2019, here.

Experts discussed updates in the treatment of multiple myeloma during live webinars hosted by the National Comprehensive Cancer Network (NCCN) on April 15 and 16, 2019.

Care Coordination for Your Loved One Living with Cancer and Other Health Problems

This podcast was originally published by Cancer Care.org on June 17, 2019, here.

 

 

Topics Covered

  • Overview of Cancer & Co-Morbidities
  • The Role of Caregivers in Care Coordination for People Living with Cancer & Co-Morbidities
  • Tips for Communicating with the Health Care Team about Care Coordination
  • Challenges of Coordinating Your Loved One’s Care & Follow-Up Appointments
  • Adherence – Taking Pills on Schedule
  • Lead time in Refilling Prescriptions & Planning for Visitors, Weekends, Special Occasions, Travel & Holidays
  • Resources for the Costs of Care, including Homecare
  • Finding the Practical Help You Need: Co-Pay Foundations & Federal, State & Local Programs
  • Legal Advocacy Tips for Caregivers
  • Learning How to Appeal Insurance, Medical, Medicaid & Provider Denials
  • Other Resources, VA Benefits & Family Medical Leave Act/FMLA
  • Tips on Choosing Community & Medical Resources to Improve Your Quality-of-Life
  • Time Saving Self-Care/Self-Advocacy Tips for Caregivers
  • Questions for Our Panel of Experts

Our Panel of Experts

Stewart B. Fleishman, MD

Former Founding Director, Cancer Support Services, Continuum Cancer Centers of New York, Author, Researcher in Oncology

Guadalupe R. Palos, RN, MSW, DrPH

Clinical Protocol Administrative Manager, Office of Cancer Survivorship, The University of Texas MD Anderson Cancer Center

Debra J. Wolf, Esq.

Senior Supervising Attorney, LegalHealth, New York Legal Assistance Group (NYLAG)

Carolyn Messner, DSW, OSW-C, FAPOS, FAOSW

Director of Education and Training, CancerCare

Deciphering My Lab Results

This resource was originally published by Myeloma Crowd here.

We thought it might be helpful to have a document that describes your multiple myeloma test lab results and helps identify the important markers. This document contains a diagnosis summary checklist, a treatment summary form and each lab result described and color-coded for relevance.

 

Download It Here:

DECIPHERING MY MYELOMA LAB RESULTS

Managing Out of Pocket Expenses for Melanoma

This video was originally published by Cancer Support Community on August 24, 2015, here.

 

Lung Cancer: Coping With Unexpected Challenges

This video was originally published by Cancer Support Community on August 13, 2015, here.

Encore: Facing a Lung Cancer Diagnosis

This podcast was originally published by Cancer Support Community on November 17, 2015, here.

“Being empowered is choosing to adopt actions, behaviors, and attitudes that can help you regain a sense of control over your treatment and life with cancer,” excerpt from Frankly Speaking About Cancer: Lung Cancer. Part of being empowered means learning all you can about your specific type of cancer—what it is, how it affects your body, how it’s treated and what you can expect during diagnosis, treatment and beyond.

 

Know What Your Doctors Know: Non-Small Cell Lung Cancer

This video was originally published by National Comprehensive Cancer Network on December 17, 2018, here.

CLL: Risk, Research, and Resources

This podcast was originally published by The Bloodline With LLS on January 22, 2019, here.

Join Alicia and Lizette from The Leukemia and Lymphoma Society as they speak with Dr. Ann LaCasce, Program Director of the Dana-Farber/ Partners CancerCare Fellowship, the largest hematology/oncology training program in the country. On this episode, Dr. LaCasce explains the difference between chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL), CLL and its connection with Agent Orange exposure, resources available for Veterans, current and emerging therapies, clinical trials and the importance of medication adherence. Dr. LaCasce shares her excitement for what is to come for CLL treatment and her appreciation for fellow providers around the world, who work to move science forward as they continue to learn from each other.

Ann LaCasce, MD