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About Erika Johnson

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So far Erika Johnson has created 70 blog entries.

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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Flu Season: Preparing and Protecting the Immune System When You Have Multiple Myeloma

It's flu season--which means that sicknesses from mild to severe are constantly spreading from person to person. Whether it be the coffee shop down the street or the clinic, it seems as if no where is safe from those pesky germs and viruses. During this season, myeloma patients must take extra precautions to avoid illnesses. [...]

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In Thanksgiving: The Ups, Downs and Tips of the Holiday Season with Kathy Cartwright

Originally written by myeloma patient Kathy Cartwright.   I have had multiple myeloma for 17 years. I have been blessed to enjoy many holidays and family events over the years.  I do not want to come across as complaining because I realize many MM patients do not get so many after diagnosis.     The [...]

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Patient Power: Jim Bond’s Exercise Philosophy “Sit, Stand, Walk”

James (Jim) Bond was diagnosed with stage 3 multiple myeloma 25 years ago. Preparing for his first transplant, it was important for his body to be in the best condition possible through daily exercise and balanced nutrition. After the transplant, Jim developed a new goal: to get out of bed as much as he could. [...]

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Most Efficient Combination Regimen for Relapsed/Refractory Myeloma by Meta-Analysis

A recent analysis of relapsed or refractory multiple myeloma clinical trials concluded that combination and triple regimens are effective first-line treatment strategies. Xian-Wu Luo and a group of fellow Chinese researchers from Wuhan University performed an updated network meta-analysis because of the complex biological makeup of myeloma. They studied results from 24 clinical trials to [...]

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Patient Power: Patient Matt Goldman Climbs Mt. Kilimanjaro

In February of 2018, myeloma patient Matt Goldman and a team of patients from the Multiple Myeloma Research Foundation (MMRF) ascended 19,000 feet up Mount Kilimanjaro, Africa. He is an example of miracles that can happen when treatment is effective and dreams are made plans. This fundraiser quickly became an adventure that Matt and others [...]

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Swimming As Exercise: Have You Tried It?

Some myeloma patients enjoy running or walking, some enjoy yoga or weight lifting. Choosing exercises that fit the patient's needs and abilities is most important. But many forget that swimming can be used not only as recreation, but as a fantastic workout as well. Swimming has been found to provide benefits that most other forms [...]

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Putting One Foot In Front of the Other: Why Multiple Myeloma Patient Paula Waller Chooses to Keep Moving

As written by Paula Waller, myeloma patient. Like many patients, I was completely stunned when I was first diagnosed. During those early weeks, I sometimes felt unable to even think clearly, but I could still put one foot in front of the other and walk. It was during long walks that my husband and I [...]

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Increased Sitting Time Leads to Higher Risk of Death, American Cancer Society Study

A new study by the American Cancer Society recently found that long periods of leisure sitting time are linked to a higher risk of death. The study followed 127,554 people for 21 years. During the study's period of time, 48,784 people died. The participants who reported the most leisure sitting time had a higher risk [...]

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Patient Power: How Much Exercise Is Too Much for Multiple Myeloma Patients?

The benefits of exercise to a myeloma patient are numerous--physically, mentally, and emotionally. But how much exercise is too much? When does it become unsafe? Melanie House, physical therapist of the University of Iowa Hospitals and Clinics, cites studies which prove that occasionally exercise is more powerful than drugs that have been FDA-approved. "If you're [...]

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Patient Power: Endless Benefits of Yoga for Cancer Patients

During the month of September, we will be featuring stories and articles about fitness and multiple myeloma as part of our Muscles for Myeloma series.  Trying new things can be stressful. Most people have grown up jogging or playing sports for exercise, but yoga can sometimes seem like it might be right for "other" people. [...]

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Overcoming Barriers to Being Active with Multiple Myeloma: Michelle’s Story

  Michelle Breaux definitely understands the struggle of balancing life as a patient of multiple myeloma, especially when it comes to exercise. She is the mother of 3 young children: a 3-year-old and 11-month-old twins. Caring for her children, combined with working full time and the fatigue of living with myeloma can make exercise seem [...]

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Paul Butler: Making Exercise a Priority as a Myeloma Patient

During the month of September, we will be featuring stories and articles about fitness and multiple myeloma as part of our Muscles for Myeloma series.  As written by Paul Butler, 59 year old myeloma patient. When I was first diagnosed with multiple myeloma, in October 2013, the news was grim: the bone marrow biopsy showed [...]

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Real World Vs. Clinical Trial Multiple Myeloma Outcomes Can Differ

Survival outcomes in real-world practice may not mirror outcomes found in clinical trials for non-transplant patients with multiple myeloma, according to research published in the Annals of Hematology. More modern treatments are helping multiple myeloma patients live longer, but myeloma still remains incurable for most patients. The research community assesses patient outcomes from data inside [...]

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New Study Finds that Myeloma Can Be Detected by Simple Blood Tests

Multiple myeloma is typically difficult to diagnose because it's symptoms are non-specific. Back pain, fatigue and anemia can be common for the older population in general, which means that these myeloma symptoms can be easily ignored by both patients and general practitioners. But a delay in diagnosis worsens myeloma patients' overall outcomes. British experts from [...]

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The Benefits of DNA/RNA Sequencing for Drug-Resistant Myeloma Patients

Mount Sinai researchers from the Icahn School of Medicine have created a RNA and DNA sequencing platform that helps late-stage and drug-resistant multiple myeloma patients by deciphering their best drug treatment options.  “Multiple myeloma (MM) is a malignancy of plasma cells, with a median survival of six years. Despite recent therapeutic advancements, relapse remains mostly inevitable, and [...]

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Patient Power: Diet Proves to Maintain Immune System for Myeloma Patients

If you take a stroll through any grocery store pharmacy, you'll see pill bottles that promise to be “Immune Boosters” or “Immunity Strengtheners.” Of course, multiple myeloma patients can be enticed because somehow, our immune systems have "let us down" in fighting cancer.  While there is no evidence that supplements boost immunity, Julie Lanford (MPH, [...]

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Multiple Myeloma Care Survivorship: The Need for Improvement

Cancer is a physically detrimental disease, but it’s effects can lead to emotional, psychological, economic, social, or spiritual difficulties as well. This creates an overall battle that cannot be won independently. All of these needs—physical, emotional, psychological, economic, social or spiritual—must be met. To isolate and address these needs, the National Comprehensive Cancer Network (NCCN) [...]

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Patient Power: Should I Join a Clinical Trial?

A clinical trial is an option for treatment for most multiple myeloma patients at every stage of disease - for newly diagnosed patients or for those at relapse. Clinical trials are the way doctors bring new therapies into the clinic and typically test new therapies alone or in conjunction with standard of care myeloma drugs. [...]

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Former MLB All-Stars Dave Winfield and Steve Garvey Help Launch Myeloma MVP™

Former Major League Baseball All-Stars Dave Winfield and Steve Garvey are teaming up with Amgen to launch a national campaign to help multiple myeloma patients develop their Most Valuable Plan (MVP)—which is focused on creating an individualized approach for managing the disease. Both Winfield and Garvey have been affected by myeloma to some degree in [...]

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Dr. Eric Zhou: How to Overcome Sleep Problems After A Stem Cell Transplant

Originally seen on bmtinfonet.org. Many myeloma patients receiving stem cell transplant can encounter issues with falling and staying asleep during the night. Dana-Farber Cancer Institute's Dr. Eric Zhou presented at the 2018 Celebrating a Second Chance at Life Survivorship Symposium on managing sleep problems after transplant. Watch the video below or see the full transcript. [...]

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A New Tool Called HealthTree for Multiple Myeloma Patients Is Coming to the Golden State

The Myeloma Crowd is proud to introduce a new online tool for multiple myeloma patients called HealthTree. Founder and California native Jenny Ahlstrom is coming to the Golden State over the next two weeks to host one-on-one workshops. Join us at a location below and please RSVP (so we can plan for food).  We've spent [...]

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Certified Cancer Exercise Specialist Cathy Skinner’s Advice to Myeloma Patients on Battling Fatigue

CEO and co-founder of Thrivors Cathy Skinner was an NCAA volleyball coach for 10 years before she started coaching cancer patients and survivors. Her switch came about after her father was diagnosed with multiple myeloma 20 years ago. She became the first certified cancer exercise specialist in Minnesota. Through her years of experience and many [...]

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Extended Stay America Donates Hotel Rooms to Cancer Patients

Originally seen on cancer.org. Extended Stay America is partnering with the American Cancer Society to provide 10,000 free nights and 10,000 discounted nights in its hotels to cancer patients who must travel to another city to receive treatment. The donation will expand the Society’s Guest Room program, which offers free and discounted rooms to patients [...]

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Myeloma Crowd Cycling: Richard Hite, Myeloma Survivor

On July 14, 2018 Richard Hite, multiple myeloma cancer survivor, will be participating in the Cache Gran Fondo cycling event.  He will be riding along with other cancer survivors and team Myeloma Crowd Cycling to find a cure for multiple myeloma. He is aware that there are many people that are fighting cancer and are [...]

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EHA: Gene Expression Profiling SKY92 Test Validated in Multiple Myeloma

At the recent European Hematology Association 23th Annual Congress (EHA) in Stockholm, Sweden, data showed that the gene expression profiling test (called SKY92) from SkylineDX was important tool to risk-stratify patients with Multiple Myeloma.  Knowing your myeloma genetics is important at diagnosis and at relapse. Myeloma patients can present with several types of myeloma at [...]

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Patient Power: Getting Diagnosed with Cancer—TWICE! Carol Preston’s Reality

Let’s face it, a cancer diagnosis is probably one of the most challenging events that a person could have during his or her lifetime. But, what if it happens AGAIN? Cancer patient and advocate Carol Preston was diagnosed with chronic lymphocytic leukemia in 2006, and then was left blindsided with a second diagnosis of a [...]

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Adaptive Biotechnologies and Sanofi Team Up to Test Isatuximab

A minimal residual disease testing company, Adaptive Biotechnologies, is working with Sanofi to use it's MRD test for patients receiving isatuximab, a new monoclonal antibody targeting CD38. The clonoSEQ test will measure minimal residual disease for isatuximab patients and help determine the value of MRD testing for those patients.  “MRD status is being incorporated as [...]

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