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About Erika Johnson

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So far Erika Johnson has created 99 blog entries.

Muscles for Myeloma: Self Awareness and Doing What You Can

September is Blood Cancer Awareness month and time to focus on how some myeloma patients are developing Muscles for Myeloma. Staying fit is critical for your best myeloma outcomes. Every patient will be different in what they can do, so talk with your doctor, listen to your body and stay as active as you possible [...]

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Muscles for Myeloma: Just Move–Daily Walks with Nicole

September is Blood Cancer Awareness month and time to focus on how some myeloma patients are developing Muscles for Myeloma. Staying fit is critical for your best myeloma outcomes. Every patient will be different in what they can do, so talk with your doctor, listen to your body and stay as active as you possible [...]

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Muscles for Myeloma: Myeloma Patient Runs Across North Carolina to Raise Awareness

September is Blood Cancer Awareness month and time to focus on how some myeloma patients are developing Muscles for Myeloma. Staying fit is critical for your best myeloma outcomes. Every patient will be different in what they can do, so talk with your doctor, listen to your body and stay as active as you possible [...]

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MGUS Patients Can Progress to Multiple Myeloma In Just 5 Years

Researchers at MSKCC (Memorial Sloan Kettering Cancer Center) recently found that patients with "a low- or intermediate-risk MGUS, a precursor to MM [multiple myeloma], can convert to high-risk MGUS and develop MM within just 5 years". MGUS (monoclonal gammopathy of undetermined significance) is typically diagnosed in patients while visiting the doctor for other medical reasons, [...]

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Keeping Track of Your Multiple Myeloma Medications

Let's face it, life as a multiple myeloma patient can be overwhelming. One of the stressors can be remembering to take your meds. Especially when more than one medication is involved, which is likely to occur with myeloma patients, keeping track of them can be very difficult. Whichever way you keep track of your medications, [...]

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Myeloma Crowd Round Table Expert Videos: St Louis — May 18, 2019

On May 18, 2019, a Myeloma Crowd Round Table meeting was held in St Louis, Missouri at the Eric P. Newman Education Center featuring six myeloma experts, including: Dr. Robert Kyle, Mayo Clinic, Rochester, MN Dr. Amrita Krishnan, City of Hope, Duarte, CA Dr. Mark Schroeder, Washington University, St. Louis, MO Dr. Keith Stockerl-Goldstein, Washington University, [...]

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Caregivers: How Do I Help My Multiple Myeloma Patient?

As a caregiver, supporter, friend or family member, it can be hard to know exactly how to help your myeloma patient. Your loved one has the disease, but sometimes it can feel as if you are carrying the weight of it just as much. It can even be confusing figuring out how MUCH to help. [...]

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Patient Power: Join the Myeloma Town Meeting On September 7 in Houston

Register for the Town Hall   Join us for the Myeloma Crowd and Patient Power Myeloma Town Meeting on Saturday, September 7th 2019 in Houston, Texas at The University of Texas MD Anderson Cancer Center. Topics of discussion will include: the latest research and treatment news with a panel of myeloma experts, learning how [...]

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New Study Helps Researchers Determine Which MGUS Patients Develop Multiple Myeloma

Researchers at the Memorial Sloan Kettering Cancer Center (MSK) published results that found individuals with low-risk or intermediate-risk myeloma precursor disease known as monoclonal gammopathy of undetermined significance (MGUS) can convert to high-risk MGUS and progress to multiple myeloma within a five-year window. This research clinically supports recommendations for annual blood tests for all individuals [...]

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Patient Power: Are Myeloma Experts Redefining “High-Risk” for Older Patients?

Myeloma expert Dr. Tanya Wildes of the Washington University School of Medicine spoke at the recent ASCO (American Society of Clinical Oncology) conference in Chicago. Her topic was addressing a new definition of "high-risk" for older multiple myeloma patients. Traditionally, standard-risk and higher-risk are defined by a few factors, including the International Staging System (ISS), [...]

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Multiple Myeloma Side Effects: Neuropathy

If you are starting a new treatment or using supplements, you should discuss it with your doctor. Neuropathy is weakness, numbness, and pain from nerve damage (typically in the hands and feet). The myeloma protein produced by malignant plasma cells can cause direct damage to nerve cells, resulting in symptoms of neuropathy. We asked myeloma [...]

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New Tool to Predict And Prevent Blood Clots in Multiple Myeloma Patients

On July 18, the Hutchinson Institute for Cancer Outcomes Research (based at the Fred Hutchinson Cancer Research Center, along with the University of Washington and Seattle Cancer Care Alliance) presented new research on a preventative approach doctors can take by predicting blood clots for multiple myeloma patients. The doctors will be able to evaluate which [...]

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Clinical Trial: Avelumab in Combination With Hypofractionated Radiotherapy in Patients With Relapsed Refractory Multiple Myeloma

This open-label, Phase 2 study is studying whether the monoclonal antibody Avelumab, in combination with radiation therapy, is safe in the treatment of relapsed/refractory myeloma. Open-Label: Patients and their doctors will know both the treatment and the dose that they will be receiving. One of the ways that cancer cells have learned to protect themselves is [...]

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Bike the Coast 2019 Day 6: Keep Your Wheels Moving in Myeloma with Maintenance Therapy

Donate to Richard's Ride   Congratulations to Richard Hite, who successfully completed his 600 mile ride from San Francisco to San Diego in just 6 days! Richard rode to raise funds and awareness of multiple myeloma. Thank you Richard, your family and your amazing support team who kept you going on this truly incredible [...]

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Bike the Coast 2019 Day 3: Ride With Myeloma Friends for Support (Find a Myeloma Coach)

Donate to Richard's Ride Imagine this: You're getting ready to begin your first big race. You've prepared very well--you've studied your route inside and out, your bike visited the shop for last minute tune-ups, you have plenty of water and a few snacks for needed energy, and you've trained with the best of the [...]

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New Myeloma Imaging Guidelines Developed by Jens Hillengass, MD of Roswell Park

Dr. Jens Hillengass, Chief of Myeloma at Roswell Park Comprehensive Cancer Center (Buffalo, NY), led the International Myeloma Working Group (IMWG) to organize new guidelines for imaging techniques to be more accurate when diagnosing myeloma patients, as well as other plasma-cell disorders.  New treatment and drug strategies are significantly improving each year. These guidelines are [...]

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Bike the Coast Day 1: Start Your Ride With A Myeloma Specialist

Today begins our Bike the Coast 2019 event, a 600 mile ride from San Francisco to San Diego with multiple myeloma survivor and cyclist Richard Hite. Richard was diagnosed with myeloma in 2015 and decided that myeloma was not going to slow him down. All proceeds will go to support multiple myeloma research. Donate to [...]

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Annual Muscles for Myeloma 5K and 1 Mile Walk in Columbus, OH: Why We Participate

We participate in the Muscles for Myeloma 5K and 1 Mile Walk [in Columbus, Ohio] because we want to support research for a cure for multiple myeloma. It’s that simple. We began our involvement in supporting research when our daughter Sarah was diagnosed with multiple myeloma in 2005. We are grateful that Sarah is healthy [...]

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Targeted Oncology: Socioeconomic Disparities Influence Survival in Multiple Myeloma

A new study aimed to highlight the relationship between socioeconomic disparities and treatment outcomes. Results showed that higher incomes and private insurance are associated with a significantly greater probability of survival for myeloma patients. "After a median of 30 months on treatment, patients that lived in areas with a median regional annual income ≥$46,000 experienced a 16% [...]

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Patient Power: Getting Good Nutrition When You Don’t Feel Like Eating

Julie Lanford, MPH, RD, CSO, LDN, also known as "The Cancer Dietitian", is a board-certified specialist in oncology nutrition and a registered dietitian-nutritionist. She's been a registered dietitian for over 10 years, most of which has been focused working with cancer patients. Julie recently discussed on Patient Power what to eat when you don't feel [...]

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Takeda Oncology Launches My Mentor Connections Program for Myeloma Patients

Help navigating myeloma is always needed. For many patients, it's helpful to have a mentor help walk you through your myeloma journey. Takeda Oncology recently launched its new program called My Mentor Connections which focuses on supporting and encouraging multiple myeloma patients on their individual journeys. These mentors are patients and caregivers who devote their time [...]

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When are Blood Cancers Like Multiple Myeloma Detected? Survey Says…

A survey recently directed by Health Union discovered that half of blood cancers are detected after experiencing symptoms, and half are detected as a result of unrelated situations. The survey named Blood Cancer In America 2019 focused on every form of blood cancer, including multiple myeloma, lymphoma, leukemia, myelodysplastic syndromes and myeloproliferative neoplasms. "Half of the [...]

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What Is Chemo Brain?

"Chemo brain" is a term used to describe thinking and memory problems that can occur during and after cancer treatment. Similar terms can be chemo fog, cancer-related cognitive impairment or cognitive dysfunction. Chemo brain is "a highly prevalent chemotherapy-related side effect that occurs in up to 75% of patients with non-central nervous system cancers, affecting the [...]

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PROMISE Study Team Will Give FREE Red Sox Tickets to Raise Myeloma Research Awareness

The PROMISE Study team is sporting a booth at the Red Sox games in Boston throughout April to raise awareness for multiple myeloma research! What is the PROMISE Study? The PROMISE study is the biggest myeloma screening study ever run to help prevent the blood cancer from occurring by catching it at an early stage. [...]

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HealthTree Patient Spotlight: Kathy Kupka

Kathy Kupka is a portrait photographer, a cancer survivor of multiple myeloma for 17 years, and the author of “Cancer is Ruff, But There is Treatment,” a photo book that has brought laughter and light to many patients in treatment. This past week, Kathy found HealthTree, a place to share her story and bring a message [...]

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Clinical Trial: Reducing Insomnia of Cancer Survivors with Yoga vs. Health Education and Cognitive Behavioral Therapy

How can myeloma patients sleep better when living with cancer? A new phase III study is comparing three groups: yoga, survivorship health education and cognitive behavior therapy to see which is most effective in reducing insomnia in cancer survivors.  Insomnia is excessive daytime napping, difficulty falling asleep, difficulty staying asleep, or waking up earlier than [...]

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Patient Power: Why Are Minorities Often Underrepresented in Clinical Trials?

Clinical trial expert Dr. Richard L. Schilsky, from the America Society of Clinical Oncology, and Cecilia Mann, care partner and community outreach volunteer at The Leukemia & Lymphoma Society (LLS), joined Andrew Schorr in a recent Clinical Trial MythBusters segment on Patient Power. Here's the issue: How do we know what we're testing in clinical trials applies to people [...]

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Register for Myeloma Crowd’s HealthTree Workshop on March 21 in Washington DC

REGISTER NOW!   Our HealthTree summer 2018 tour brought us to 50 cities where we shared the new HealthTree tool with over 800 patients. We’ve had requests since to come to other cities, including Washington, D.C. With HealthTree, you can store all of your myeloma information in a single place, find your best myeloma [...]

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Myeloma Awareness Month: How to Find a Myeloma Specialist

March is Myeloma Awareness Month and we're reviewing why expanding your knowledge of myeloma  and being your own best advocate can actually help lengthen your overall survival. There is so much that patients can do to get the best care possible. This article is focused on how to find a myeloma specialist. First of all, [...]

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Patient Power: Exercising with Shortness of Breath

We all know that exercise is important to maintaining a healthy lifestyle, especially as a myeloma patient. But what if you can barely walk or use the stairs without feeling exhausted or short of breath? Melanie House, MPT, DPT, NCS says that when it comes to exercising safely as a multiple myeloma patient, we should [...]

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Obesity is on the Rise, and so is Cancer

Obesity is a rising and very dangerous epidemic - the latest federal numbers state that an ever-increasing 36% of Americans aged 20-39 are obese. Even more alarming is that if trends continue, 57% of children in the United States will be obese by age 35. According to research, rates of six different cancers (multiple myeloma, colorectal, endometrial, [...]

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HealthTree at the Stillwater, Minnesota Myeloma Support Group Meeting May 8

REGISTER NOW!   The Stillwater, MN Multiple Myeloma Support Group will be featuring HealthTree in their upcoming meeting on Wednesday, May 8. Jenny Ahlstrom, founder of the Myeloma Crowd and HealthTree, will present the HealthTree tool at the meeting. Our HealthTree summer 2018 tour brought us to 50 cities where we shared the new [...]

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Register for Myeloma Crowd’s HealthTree Workshop on June 1 in Chicago

REGISTER NOW!   Our HealthTree summer 2018 tour brought us to 50 cities where we shared the new HealthTree tool with over 800 patients. We’ve had requests since to come to other cities, including Chicago, Illinois. With HealthTree, you can store all of your myeloma information in a single place, find your best myeloma [...]

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Patient Power: Tips for Coping As A New Myeloma Patient

Patient Power hosted a recent interview with a panel of multiple myeloma patients to discuss valuable advice to help others navigate their journey with cancer. The 7 myeloma patients offered many tips for coping with a new myeloma diagnosis: Advocate for Yourself It's important to advocate for yourself in more than just your health. Myeloma [...]

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Clinical Trial CAR T Coverage for Medicare/Medicaid Multiple Myeloma Patients Proposed

On February 15, the Centers for Medicare & Medicaid Services (CMS) announced a proposal to cover chimeric antigen receptor (CAR) T-cell therapy for cancer patients who are participating in clinical trials that study treatment effectiveness. This proposal would require CMS to cover nationwide CAR T-cell therapies "when the treatment is offered in CMS-approved registries or [...]

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Anonymous $75 Million Gift Funds New NYU Center for Blood Cancers

A new Center for Blood Cancers will be the domain for a world-class program for multiple myeloma care and research, thanks to a $75 million anonymous donation made in support of Perlmutter Cancer Center's campaign to enhance its state-of-the art research and clinical space. The center will provide more patient services, increase and foster research efforts, [...]

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A “LinkedIn for Cancer” Helps Myeloma Patients Find Help – and Hope

As seen on Freethink, by Kaitlin Ugolik. When Jenny Ahlstrom, a mother of six, was diagnosed with terminal blood cancer in 2010, it felt like déjà vu. Just five years before, she had watched her brother-in-law David succumb to a similar disease at age 33. Jenny’s husband Paul, who was present for both diagnoses, said [...]

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Patient Power: How Aggressive Should Smoldering Myeloma Treatment Be?

Because smoldering myeloma isn't quite active myeloma, a question remains of which treatment approach is best for a smoldering patient. In a recent interview with Patient Power, Dr. Carol Ann Huff, Dr. Suzanne Lentzsch, Dr. Sagar Lonial and Jennifer Ahlstrom of the Myeloma Crowd addressed this topic. Treating patients earlier before they develop organ damage, [...]

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Register for Myeloma Crowd’s HealthTree Workshop on March 9 in Houston

REGISTER NOW!   Our HealthTree summer tour brought us to 50 cities where we shared the new HealthTree tool with over 800 patients. We've had requests since to come to other cities, including Houston, Texas. With HealthTree, you can store all of your myeloma information in a single place, find your best myeloma treatment [...]

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Myeloma Crowd Round Table Expert Videos: Scottsdale — October 14, 2018

On October 14, 2018, a Myeloma Crowd Round Table meeting was held in Scottsdale, AZ at the Mayo Clinic featuring three myeloma experts, including: Rafael Fonseca, MD, Mayo Clinic Scottsdale Gareth Morgan, MD, FRCP, FRCPath, PhD, University of Arkansas Myeloma Institute Leif Bergsagel, MD, PhD, Mayo Clinic Scottsdale Multiple Myeloma: A Historical Perspective Dr. Leif [...]

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Patient Power: Knowledge of Evidence-Based Medicine with Cherie Rineker

Multiple myeloma advocate Cherie Rineker has been a myeloma patient for 6 years. Although she has received many treatments that fall under the category of modern medicine, Rineker's background is based in holistic health.  "I thought doctors and medicine were evil, because I had been taught that by my mother...since I was a little kid, [...]

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Patient Power: Is Maintenance Therapy Necessary for MRD Negative Patients?

When a multiple myeloma patient achieves a negative MRD test, it doesn’t necessarily mean that the patient is cured, but it does mean that the most sensitive testing available does not detect myeloma--which is a very good thing. Dr. Gareth Morgan from the UAMS Myeloma Institute noted that this stage is “a very good endpoint…but, [...]

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Patient Power: How Do I Know When to Switch My Treatment?

Myeloma patients often wonder if or when they should switch myeloma treatments. When assessing patients and a possible change of treatment, Dr. Ajay Nooka of the Winship Cancer Institute usually begins by defining the patient’s risk level—standard risk, intermediate risk, or high risk, which are all determined by myeloma genetics. For a newly diagnosed patient, [...]

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Neuropathy: Myeloma Patient Lou Johnson Shares Her Story

Originally taken from myeloma patient Lou Johnson's responses.   Neuropathy is the weakness, numbness, and pain from nerve damage, usually in the hands and feet. It is very common among multiple myeloma patients as a side effect from the disease as well as proteasome inhibitors and Thalidomide (an immunomodulator).    Multiple myeloma patient Lou Johnson [...]

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Clinical Trial: The MyDrug MMRF Study Recruiting for 228 Myeloma Patients

The MMRF announced the launch of a new clinical trial called MyDrug (Myeloma - Developing Regimens Using Genomics). The goal of the study is to match 228 patients with specific genetic myeloma features (like 11;14, 4;14 or other genetic features) with medications.  Patients who qualify for the study are those with greater than 30% cells mutated with the following [...]

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Myeloma Crowd Round Table Expert Videos: Buffalo — November 10, 2018

On November 10, 2018, a Myeloma Crowd Round Table meeting was held in Buffalo, NY featuring four myeloma experts, including: Morie Gertz, Mayo Clinic Jens Hillengass, Roswell Comprehensive Cancer Center Philip McCarthy, Roswell Comprehensive Cancer Center Donna Reece, Princess Margaret Hospital/University of Toronto   Myeloma Round Table Introduction Dr. Hillengass introduces the speakers for the [...]

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Multiple Myeloma Research Receives $20 Million Gift

Originally seen on the Washington University website. The blood cancer multiple myeloma takes the lives of about 11,000 Americans each year. While treatment options and life expectancy have improved in recent years, there’s still no cure. That reality has inspired St. Louis native Rodger Riney and his wife, Paula, to give $20 million to research [...]

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Myeloma Patient Kathy Haywood Makes the Most of the Holiday Season

Originally written by myeloma patient Kathy Haywood.   The day of October 14, 2016 forever changed my life...the day I found out I had multiple myeloma.   Surgery followed by radiation and chemotherapy would soon fill my days instead of the normal routine of Christmas shopping and lunch with friends.  I never have been a late [...]

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The Leukemia & Lymphoma Society Shows Support of Clinical Treatment Act

The Leukemia & Lymphoma Society (LLS) recently addressed two representatives of the United States House in support of the CLINICAL TREATMENT Act. It is a legislation that will guarantee coverage of routine care costs associated with participating in an approved clinical trial for Medicaid enrollees with a life-threatening condition. Medicaid (one-fifth of the U.S. population [...]

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