About Lizzy

Lizzy Smith was diagnosed with myeloma in 2012 at age 44. Within days, she left her job, ended her marriage, moved, and entered treatment. "To the extent I'm able, I want to prove that despite life's biggest challenges, it is possible to survive and come out stronger than ever," she says.

Empliciti (Elotuzumab) Is Approved In Europe for Relapsed/Refractory Myeloma Patients

Great news for myeloma patients in Europe: the European Commission (EC) has approved Empliciti (elotuzumab), in combination with Revlimid (lenalidomide) and dexamethasone for the treatment for those with relapsed and refractory disease who have had at least one prior therapy. Empliciti is the first immunostimulatory to be approved by the European Union for the treatment of multiple [...]

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CLINICAL TRIAL: Selinexor With Stem Cell Transplant

Researchers are always looking for ways to make stem cell transplant more effective. Here's a new clinical trial opening soon using a new oral agent. The Moffitt Cancer Center in Tampa, Florida is opening a Phase I/II clinical trial using the drug Selinexor to start in July 2016 for approximately 46 patients. Its purpose is to determine the [...]

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New York Times: Exercise Tied to Lower Risk for 13 Types of Cancer (Including Blood Cancers)

As part of the Muscles for Myeloma effort, we have been encouraging myeloma patients to exercise. Patient fitness levels matter when treatments options are selected. The more "fit" we are, the more treatments we have available to us (and, generally, the better we will fare). An article published in the New York Times confirm that the more one exercises, the [...]

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Are Stem Cell Transplants Still a Preferred Treatment For Myeloma? A Study Says YES

In this age of novel therapies for treating multiple myeloma, is the auto stem cell transplant (ASCT) still necessary? According to the results of a phase III trial ("Upfront autologous stem cell transplantation (ASCT) versus novel agent-based therapy for multiple myeloma (MM): A randomized phase 3 study of the European Myeloma Network - EMN02/HO95 [...]

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The Link Between Obesity and Myeloma for African Americans

Multiple myeloma and mortality are higher among African Americans than other populations groups. The rate of obesity is also higher. A new study has sought to develop a greater understanding of how body size affects the odds of developing multiple myeloma for African Americans. The findings were recently published in the Journal of the [...]

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The Myeloma Roller Coaster: Treatment, Recovery, Live. Repeat.

BY LIZZY SMITH Today I feel compelled to write about the Myeloma Roller Coaster, one all of us in the myeloma world know too well. It is filled with highs (treatment is working, remission!) and lows (relapse, bad numbers, compressed spine). Each visit with the oncologist can mean great news, or not so great news. [...]

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CLINICAL TRIAL: BL-8040 For Myeloma Patients Receiving Allo Stem Cell Transplant

Stem cell collection is a key step in stem cell transplant. The faster donors collect their stem cells, the faster patients can get the transplant. A new drug called BL-8040 may not only help collect stem cells faster, but may also kill myeloma cells, giving extra power to allogeneic transplant. BioLineRx is starting its Phase 2 trial of BL-8040 as a [...]

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CLINICAL TRIAL: New Immunotherapy (Reovirus called Reolysin) Now Being Used for Relapsed/Refractory Myeloma with Bortezomib + Dex

A new immunotherapy called a reovirus is being used in combination with standard myeloma drugs in an early clinical trial. This reovirus helps boost tumor-fighting activities and has been studied with both allogeneic and autologous transplant. Researchers are now combining this reovirus, called Reolysin, with other standard myeloma drugs without transplant. Last December, results from [...]

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Relapsed/Refractory Myeloma Patients Benefit From Adding Ixazomib To The Mix

The addition of Ninlaro (ixazomib) to treatment combos is improving outcomes for relapsed/refractory myeloma patients, says a study published in the April 28 New England Journal of Medicine. When added to lenalidomide and dexamethasone, it significantly improved progression free survival.  Philippe Moreau, M.D., from University Hospital Hôtel Dieu in Nantes, France, and colleagues conducted a double-blind trial [...]

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Targeting Cancer Stem Cells May Lead to Better Outcomes In Myeloma

We all know that multiple myeloma is a wiley disease and can evolve over time to become more aggressive. Researchers at Johns Hopkins Kimmel Cancer Center are trying to stop myeloma in its tracks by targeting myeloma stem cells - or the cells that cause the myeloma to grow. They found that these stem cells actually [...]

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Riding with Richard – One Myeloma Patient’s Journey to Get Back on the Bike

Richard Hite lives near Salt Lake City and is treated at Huntsman Cancer Institute.  Rich was diagnosed with multiple myeloma in April 2015. He was 38 years old, married, and with three children, then ages 11, 9 and 8. He owns The Barber School and was working full time and enjoying his favorite activities of [...]

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Daratumumab Combo Shows Positive Results For Relapsed/Refractory Myeloma

Janssen Research & Development has announced positive results of  an interim analysis of a trial comparing the success and safety of the triple combo daratumumab, bortezomib and dexamethasone (dex) vs. bortezomib and dex alone in myeloma patients with relapsed or refractory disease. The interim analysis of the trial found that the daratumumab combo treatment regimen improved [...]

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IMWG Develops New Recommendations for Myeloma-related Kidney Impairment

Renal impairment is a very serious cause of multiple myeloma and can quickly become a medical emergency. Kidney failure is also one way that patients often first present with the disease. Addressing this issue, the International Myeloma Working Group (IMWG)has developed practical recommendations for the diagnosis and management of multiple myeloma-related renal impairment. The group based its [...]

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CLINICAL TRIAL: High Risk Smoldering Myeloma Patients

Treating high-risk smoldering myeloma may delay or prevent the progression to active myeloma. A phase II clinical trial, by the Dana-Farber Cancer Institute, Bristol-Myers Squibb and Celgene, will be enrolling about 82 patients. It will test the effectiveness of the investigational drugs elotuzumab, lenalidomide and dexamethasone in smoldering multiple myeloma. The purpose is to learn [...]

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Exercise & The Myeloma Patient: Amazing For Your Body & Soul

BY LIZZY SMITH In 2012, I was between tandem stem cell transplants and my doctor said I could take a vacation. I almost started crying when he said that. It was a sign that I was still a human, not just a cancer patient, and I deserved to forget about cancer for a bit and re-charge. [...]

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Patient Power: Progress in Myeloma Care Through Combo Therapies

Are you refractory to some of the existing myeloma medications? Are you a relapsed patient? Dr. John Burke, Dr. Faith Davies and Dr. Noopur Raje along with patient advocate, Jack Aiello. For Patient Power, they discuss staying on maintenance treatment until progression in order to deepen response and achieve minimal residual disease (MRD) negativity, creative [...]

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CLINICAL TRIAL: Marizomib For Relapsed/Refractory Myeloma

Marizomib is a new proteasome inhibitor that is different from bortezomib and carfilzomib. It a recent study published in Blood, it was generally well tolerated and may have clinical activity in previously treated, relapsed or refractory multiple myeloma. One important question for new drugs is always, "How much should be given and what's the best administration?" Phase [...]

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Minimal Residual Disease (MRD) May Lead To Better Myeloma Treatment

In myeloma, testing for measurable residual disease (MRD) after a stem cell transplant (SCT) is mainly done in research and clinical trials. But that is getting set to change and may soon become common for the standard patient. And as doctors discover which of their patients achieve a stringent complete remission after transplant, should those that do undergo maintenance therapy? Over [...]

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Investigational Drug Aplidin Looks Promising for Treating Refractory Myeloma

More hopeful news in myeloma treatment with the advancement of PharmaMed's drug Aplidin® (plitidepsin) for refractory disease. The company is located in Madrid. Aplidin has received orphan drug designation by the European Medicines Agency (EMA) and the US Food and Drug Administration (FDA). It is expected to be available in Australia, Southeast Asia 2018. No word yet [...]

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Refractory Myeloma? PomCyDex May Be an Effective Oral Option

Pomalidomide plus cyclophosphamide and dexamethasone (PomCyDex) resulted in a higher overall response rate as compared with pomalidomide plus low-dose dexamethasone (PomDex) in patients with refractory multiple myeloma, a study published in the journal Blood has shown. Because PomDex is a standard treatment for patients refractory to Revlimid (lenalidomide) who have received three or more prior [...]

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Salt Lake City: Join Us for Muscles for Myeloma 5k! Sat, April 30, 7:30 AM, Thanksgiving Point Tulip Festival (Lehi)! Plus, Dinner Night Prior!

Dear Utah Myeloma Community: We invite you to join us for the Thanksgiving Point Tulip Festival 5k walk/run in Lehi on Saturday, April 30, 7:30 AM meet time for team photos; 8AM race start time. We will be having our own Muscles for Myeloma team doing this race together. We've done this in the past [...]

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Patient Power: Creating SparkCures– A Site That Makes Finding a Myeloma Clinical Trial Easy-Peasy

Medical correspondent for Patient Power, Carol Preston, interviews the creator of SparkCures, Brian McMahon. Getting into a clinical trial is not as easy as one might think (or hope). In fact, it can mean sifting through sometimes thousands of clinical trial, trying to decipher what the summaries mean, and if the information is even up-to-date. [...]

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Why Should The Myeloma Survivor Exercise? Here Are 10 AMAZING Reasons!

BY LIZZY SMITH In October 2012 I had just finished up the second of my tandem stem cell transplants. I was weak, just starting the healing process, and lacked a frightening amount of muscle tone. Pre-myeloma, I was a runner and had very strong legs. A year later, they were vanishing and I hated it. [...]

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Combo of Velcade, Thalidomide & Dex is Preferred Treatment for Myeloma Patients Preparing For Stem Cell Transplant

For myeloma patients preparing for an auto stem cell transplant (SCT), a new study published in the journal Blood shows that the combo of Velcade + thalidomide + dex (VTD) is more effective than Velcade + cyclophosphamide + dex (VCD). VTD and VCD have both demonstrated high response rates and are two of the most commonly [...]

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Janssen Inititiates Studies Evaluating Two Monoclonal Antibodies Together: Daratumumab and Atezolizum

Janssen and Genentech will enter clinical collaboration to assess dual monoclonal antibody combination therapy Janssen and Genentech are initiating two studies to determine the safety and tolerability of daratumumab (DARZALEX®) in combination with atezolizumab, an investigational monoclonal antibody. Janssen will sponsor a Phase 1b, open-label, multi-center clinical trial that will investigate the potential of [...]

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Myeloma Crowd’s Jenny Ahlstrom Receives Myeloma Hero Award From Cure Magazine at Miami Event

Cure Media Group, the nation's leading digital and print media enterprise focused on cancer patients, officially named eight recipients of the first annual Multiple Myeloma Heroes Awards to honor individuals making heroic contributions in the field of multiple myeloma or in the lives of patients with multiple myeloma. Nominated by patients, caregivers and colleagues, the [...]

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Get Moving! Myeloma Survivor Kelly McArdle’s Path To Fitness

BY KELLY MCARDLE It was about a year after my transplant that I decided that it was time for serious change. I somehow fell into this routine of watching Netflix and eating whatever I wanted and I was starting to see the changes in my body. Before, when I was sick and didn't know I [...]

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STUDY: Two-Drug Combo of Bortezomib + Oral Prednisone is Best for Frail Myeloma Patients

A two-drug combination with subcutaneous bortezomib and oral prednisone followed by maintenance therapy should be the preferred treatment for frail patients with multiple myeloma, a study published in the journal Leukemia has shown. For the phase 2 trial, researchers in Italy sought to evaluate three low-dose intensity subcutaneous bortezomib-based treatments in patients 75 years of [...]

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CURE Reports – A New Lease on Life: Treatments Are Extending Life Expectancies for Myeloma Patients

Four new drugs, and novel treatment combinations, are further extending life expectancy for patients with multiple myeloma. CURE magazine has recently published an informative and hopeful article about how myeloma treatments are extended life and quality of life more than ever. The article can be read in its entirety by clicking here. Highlights include the [...]

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Weds, Mar 16 & 23: Lifetime to Air Show About Multiple Myeloma

We wanted to make you aware of an upcoming multiple myeloma program on Lifetime’s Access Health. On Wednesday, March 16, 2016, the nationally syndicated program, Access Health TV  (www.accesshealth.tv), will air a segment on one of their programs that will focus on Multiple Myeloma, providing an overview of the disease and treatment challenges. Featured in this broadcast [...]

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How Close Are We To A Cure For Myeloma? Patient Power Responds

One word we myeloma patients cannot wait to hear? You're cured. With all the new innovative medications, combinations and treatment options, when can we start using that word? And how far are we away from curing myeloma? Myeloma survivor and advocate, Jack Aiello, asks these questions via Patient Power of Dr. Noopur Raje, Dr. Faith Davies and [...]

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FDA Approves Evomela (a New Form of Melphalan) In Treating Myeloma Patients

We always look forward to new treatments and fewer side effects. The latest is the FDA's approval of a new form of melphalan (brand name Evomela, or Captisol-enabled melphalan), a chemotherapy drug used to treat multiple myeloma patients. What is significant about Evomela is that it does not include propylene glycol (whose side effects may cause kidney and heart problems) and [...]

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Book Review: “I have WHAT?” Multiple Myeloma, Waldenstrom’s Macroglobulinemia. Amyloidosis, MGUS

Debra Berenson’s book, “I have WHAT” (available on Amazon new $25) is a “must read” for those fighting one of these diseases: multiple myeloma, Waldenstrom’s macroglobulinemia, amyloidosis or MGUS. For those who, while leading a seemingly normal life, were dealt a devastating health diagnosis, information is key. It’s the only way one can choose from a [...]

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Patient Power: How Do the Latest Myeloma Treatment Approvals Affect Newly Diagnosed Patients?

Last year, multiple myeloma experienced unprecedented progress, as four new drugs were approved. You can read about that at Holiday Blessings for Myeloma Patients? Now More Than Ever! and Washington Post: For Multiple Myeloma Community, a November to Remember. For the newly-diagnosed patient, what do these new treatment options mean for them? Does one's transplant [...]

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Clinical Trial: NKR-2 for Progressive Relapsed/Refractory Multiple Myeloma

Celyad Begins Enrolling Myeloma and Leukemia Patient in its Third Dose Level NKR-2 Trial After Successfully Completing Safety Follow-up of the Second Dose Level of Patients The NRK-2 clinical trial (Trial ID MM-0640) is a dose escalation study evaluating the safety and feasibility of T-cell Natural Killer Receptor (NKR) in patients with acute myeloid leukemia or relapsed/refractory multiple myeloma with [...]

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Myeloma 101: Going Bald During Treatment

One of the most common questions for those entering myeloma treatment is, "Will I lose my hair?" The answer is... maybe. Most medications and treatments for multiple myeloma do not cause hair loss. However, if you are undergoing a stem cell transplant, which includes high dose intravenous chemotherapy (like melphalan), the answer is, yes. Some [...]

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Patient Power: You’re On Myeloma Maintenance Therapy. Can You Take A Vacay?

Many multiple myeloma patients are on some form of maintenance therapy that typically includes a chemo-type drug (like Revlimid). Some are on a one or two-year maintenance plan; others are opting for continual maintenance. For those of us who have taken these drugs, we live with those side-effects: chemo brain, fatigue, neuropathy, gastro-intestinal problems, and much more. So [...]

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Muscles for Myeloma: Why Workout? Your Fitness Levels Matter to your Myeloma Outcomes

Muscles for Myeloma Starts on Monday, March 1. Register Today! Consult with your doctor before starting any new fitness routine Most patients before, during or after multiple myeloma treatment are exhausted. We've all been there. Anemia caused by the myeloma can cause severe fatigue. Long-term drug combinations or stem cell transplant can really take it [...]

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Calling for Team Captains: Muscles for Myeloma. Get Fit, Have Fun & Support a GREAT Cause

Have you ever participated in a 5k (or longer) race? They are super fun and not all that hard-- you can walk or run at your own pace. Adrenaline alone would carry you to the end, if nothing else. Whether you've done a 5k before or not, Spring is the perfect time to sign up. [...]

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Myeloma 101: C.R.A.B. Symptoms of Multiple Myeloma

We often here of the term C.R.A.B. in myeloma, but what does that mean? CRAB is the acronym for the most common symptoms of multiple myeloma: C = Calcium (elevated) - hypercalcemia: Myeloma attacks bone, and as bone is broken down, it causes high calcium levels in the blood. This can cause a variety of symptoms, [...]

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Clinical Trial: bb2121 for Relapsed/Refractory Myeloma Patients

A phase 1 study of bb2121 has opened for patients with relapsed/refractory multiple myeloma. bb2121 is a chimeric antigen receptor T cell (CAR T) therapy targeting B cell maturation antigen (BCMA). Said James N. Kochenderfer, M.D., of the National Cancer Institute, “BCMA is one of the most exciting targets in multiple myeloma, and we are eager [...]

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Fabulous Exercise Options for the Myeloma Survivor

Always consult with your doctor prior to starting any new exercise routine. Exercising is good for everyone, including (and especially!) for the cancer survivor. In fact, a cancer patient's treatment options often depend on their fitness level — Fit, Unfit or Frail — regardless of age.  The more fit patients are, the more they are able to tolerate (and, [...]

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Clinical Trial: Celgene Launches Study of CC-122 for Myeloma Patients Not Responding To Standard Therapies

Celgene is conducting a study using a new drug called CC-122 (trial ID MM-0209). The purpose is to test the safety and activity of a new class of experimental drugs (Pleiotropic Pathway Modulator) in myeloma patients who are not responding to standard therapies. The study will also seek to determine the appropriate dosing level and regimen for [...]

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The Zika Virus & Myeloma Patients: Should You Be Traveling to Zika Hotspots?

The U.S. Centers for Disease Control & Prevention (CDC) has issued a travel alert and guidelines for the Zika virus. Zika is spread through mosquito bites (mostly during daytime hours). Symptoms include fever, rash, joint pain, and conjunctivitis, which are generally mild and can last from several days to a week. Severe reactions can require hospitalization. Areas where [...]

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Myeloma 101: Why should I chomp on ice during melphalan treatment?

During the stem cell transplant process, myeloma patients will receive high dose melphalan. Melphalan is a chemotherapy drug that slows the growth of cancer cells and is infused intravenously at clinic typically one to two days prior to receiving stem cells. Melphalan has a variety of side effects, including wreaking havoc throughout the GI tract and causing [...]

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Feb 4 Is World Cancer Day. So What Does Moonshot & VP Joe Biden Have To Do With Cancer?

  BY LIZZY SMITH   If you have been thrust into the Cancer World because either you or a loved one is fighting this disease, you should be learning everything you can about treatment options and more. And if you're paying attention to cancer news, you may have heard about the Moonshot initiative. But [...]

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Part 3: Does Sugar Feed Cancer? Exploring the Relationship between Sugar, Visceral Fat & Cancer

BY JEAN LAMANTIA I believe what you eat makes a difference in your cancer risk. I believe food and lifestyle changes have the ability to affect your immune system, to reduce chronic inflammation and to act on cancer cells directly. I focus my work on empowering cancer survivors to become cancer thrivers by giving [...]

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