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.

BOOK REVIEW: A Pilgrimage Without End by Myeloma Survivor & Advocate Cherie Rineker

BY LIZZY SMITH A Pilgrimage Without End: How Cancer Healed My Broken Heart by myeloma survivor and advocate, Cherie Rineker, is a fantastic read for anyone undergoing tough trials (available at the Myeloma Crowd store and Amazon). And the myeloma survivor-angle made it something I could relate all too well to. When I was done reading (and [...]

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Becoming Your Own Biggest Myeloma Advocate (you must!) + Tips

Blood Cancer Awareness Month: Take Action Thursday BY LIZZY SMITH I have been battling multiple myeloma since January 2012. What a "fun" journey it has been. At diagnosis, I left my husband and filed for divorce, packed up my two daughters and cat, and moved from San Diego to Salt Lake City to seek treatment. [...]

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CLINICAL TRIAL: YELIVA for Relapsed/Refractory Myeloma

In June, we reported that Duke University would be opening up a Phase Ib/II clinical study evaluating YELIVA (ABC294640) in patients with refractory or relapsed multiple myeloma who have previously been treated with proteasome inhibitors and immunomodulatory drugs.. The trial has now officially opened and will enroll up to 77 qualified patients. Dr. Yubin Kang, MD, Associate [...]

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CLINICAL TRIAL: Selinexor For Heavily Pretreated Myeloma Patients

Karyopharm Therapeutics Inc reported positive results from its STORM study evaluating the activity of the drug selinexor (KPT-330) in multiple myeloma. This is an oral drug that can be particularly helpful for patients who have become refractory to existing myeloma treatments. The Phase 2b study is evaluating selinexor in combination with dexamethasone for heavily pre-treated [...]

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Science Magazine: First Proposed Human Test of CRISPR Passes Initial Safety Review (& Its Testing In Myeloma)

Reprinted from Science Magazine BY JOCELYN KAISER A cancer study that would represent the first use of the red-hot gene-editing tool CRISPR in people passed a key safety review [just weeks ago]. The proposed clinical trial, in which researchers would use CRISPR to engineer immune cells to fight cancer, won approval from the Recombinant DNA [...]

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CLINICAL TRIAL: Quad Therapy Using a Checkpoint Inhibitor with Daratumumab in Relapsed/Refractory Myeloma

Later this month (July 2016), Celgene will be opening a Phase 1/2 study for approximately 406 relapsed/refractory myeloma patients using the following drugs to actively treat disease: Dararatumumab dexamethasone Durvalumab Pomalidomide Eligibility criteria includes: measurable disease as defined by m-protein or serum free light chains must have failed last line of treatment (refractory to last [...]

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Natural Killer (NK) Cells Show Promise in Fighting Myeloma (Plus 3 Trials Using Allo SCT + NK Cells Have Opened at MD Anderson!)

A first-in-human Phase I study of myeloma patients combined expanded cord blood-derived natural killer cells with stem cell transplant and high-dose chemotherapy with little or none of the side effects seen with current treatments. Natural killer (NK) cells are white blood cells that roam through the blood stream, attacking infections and potentially cancer-causing cells. The technology to [...]

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Myeloma 101: More On Proteasome Inhibitors (Velcade, Kyprolis, Ninlaro) & How They Help Combat Myeloma

Earlier, we ran a story about proteasome inhibitors. But there is much to say about this critical class of drugs used to treat myeloma. To read that article, click here. As we know, there are many classes of drugs used alone and in combinations to treat multiple myeloma. One such drug class is the "proteasome [...]

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Filanesib Used With Carfilzomib and/or Bortezomib & Dex in Relapsed/Refractory Myeloma

Filanesib, formerly called ARRY-520, has been tested in myeloma clinical trials since 2013.  Filanesib is a kinesin spindle protein (KSP) that works much differently than proteasome inhibitors or immunomodulator drugs. Proliferating myeloma cells express KSP and are sensitive to targeted inhibition of this motor protein. One protein called Mcl-1 is an important regulator of cell survival in [...]

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Meet SMM Patient & Clinical Trial Advocate Gina Spencer from Canada (She gives great coping tips!)

BY GINA SPENCER I am Gina Spencer and I live in Toronto, Canada with my boyfriend who I have loads of fun with. We love to travel, go out for dinner, to the theatre and movies. We also love bike-riding and just discovering new things about our city and the world. My own hobbies are swimming, [...]

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New Myeloma Guideline Expands Diagnostic Criteria And Adds New Agents to the Mix

The National Comprehensive Cancer Network (NCCN) establishes guidelines for myeloma treatments. Doctors use these guidelines to understand the various treatment options that are available and approved for patients. Eight new options were updated in the guidelines for 2016. To help make sense of it all, here are key take-aways according to a recently published article in Targeted Oncology: Newly Diagnosed Multiple Myeloma Up-Front [...]

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CLINICAL TRIAL: Nivolumab, Elotuzumab, Pomalidomide & Dex for Relapsed/Refractory Myeloma

Checkpoint inhibitors are now entering clinical trials are being added to standard myeloma combinations. One such phase 3, randomized, multi-center trial by Bristol-Myers Squibb and AbbVie is  will compare Nivolumab, pomalidomide, and dexamethasone to pomalidomide and dexamethasone in subjects with relapsed and refractory multiple myeloma. The study includes a third arm evaluating the clinical benefit and the [...]

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No Survival Boost With Three-Drug Combo in Older Myeloma Patients

MedPage Today is reporting that studies show that there is no survival boost with a three-drug combo when compared to a two-drug combo, and toxicity may also be a factor. Below are key excerpts from the article, which you can read in its entirety here. Triplet lenalidomide-based regimens did not induce any advantage over doublet lenalidomide-based [...]

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Myeloma 101: How Corticosteroids (Like Dexamethasone) Work to Fight Myeloma

Corticosteroids, like dexamethasone and prednisone, are staple drugs that pretty much every myeloma warrior takes, has taken, or will take. They are the drugs that patients love to hate. They can give make us hyper crazy with energy, neurotic and quick to anger. It can mess with blood sugar levels and once the dose is [...]

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Meet Denise (Caregiver) and Tim (Myeloma Survivor): Their Myeloma Journey & Tips For Navigating It

We are Denise (caregiver) and Tim (myeloma survivor) from New Jersey. Together, we have one 18-year old daughter. Tim is a patient in the Multiple Myeloma program at the John Theurer Cancer Center at Hackensack University Medical Center. I currently run the Multiple Myeloma support group there. Tim was diagnosed in March of 2007 having just turned 43. [...]

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Triple Myeloma Combo Ixazomib, Cyclophosphamide & Dex Show Encouraging Clinical Results

Another all-oral triplet combination - ixazomib, cyclophosphamide, and dexamethasone (ICd) - has shown encouraging clinical results Drugs used in combination for multiple myeloma treatment are now the norm with triplet combinations being preferred. A new oral proteasome inhibitor ixazomib (Ninloaro) was approved last November, making the triple combination of ixazomib, lenalidomide (Revlimid) and dexamethasone a more convenient [...]

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CLINICAL TRIAL: Celyad Starts New Dosing with Natural Killer Cells in Early Study for Myeloma

Natural killer (NK) cells are white blood cells that roam through the blood stream, attacking infections and potentially cancer-causing cells. Earlier this year, we reported that Celyad was recruiting patients for its natural killer cell receptor (NKR-2) clinical trial.  Last month, Celyad announced the infusion of the first patient enrolled in the fourth dose level of [...]

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CD38 Expression & Daratumumab Resistance: Can Adding ATRA Help?

BY LIZZY SMITH There has been much chatter in several myeloma support groups about Daratumumab and CD38 expression. What does this mean for the myeloma survivor who is using this drug, or who intends to use it in the future? I came across an excellent article on Cancer Network by Leah Lawrence that seems to [...]

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American Society of Hematology Data Sharing Initiative Featured at National Cancer Moonshot Summit

The American Society of Hematology (ASH), the world's largest professional organization dedicated to the causes and treatments of blood disorders, joined Vice President Joe Biden's National Cancer Moonshot Summit, a day-long conference intended to jumpstart the Administration's effort to double the pace of cancer research. ASH is helping to lead the charge to address one [...]

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Does Myeloma Run in Families? Researchers Search for More Information about Potential Links.

BY LIZZY SMITH I have scratched my head way too many times wondering how I got multiple myeloma at the age of 44 and in (what I thought was) peak health. I was a runner, ate super healthy (mostly plant-based diet), I didn't smoke or take drugs... And, surprise! Was it the two miscarriages? A [...]

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BOOK REVIEW: Radical Remission, The Nine Key Factors That Can Make a Real Difference

BY JEAN LAMANTIA Kelly Turner is a psychotherapist who specializes in integrative oncology. She has a master’s degree in social work in the field of counseling for cancer patients. During her PhD work, she studied spontaneous healing, which she calls “radical remission”. Her book, Radical Remission, The Nine Key Factors That Can Make a [...]

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Myeloma Patients Should Monitor Their Kidney Function Early & Often

The International Myeloma Working Group (IMWG), a group of nearly 200 leading myeloma researchers from around the world who collaborate on a broad range of myeloma research projects, has issued an important warning to myeloma patients: Have an assessment for kidney function at diagnosis and at every follow-up visit. MedPage Today offers an excellent summary of [...]

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For Relapsed/Refractory Patients, CD38 May Vanish Over Time

Physicians considering use of a CD38 monoclonal antibody (mAb) ,like daratumumab, to treat patients with relapsed refractory multiple myeloma are advised to first reevaluate CD38 expression. This recommendation is based on two rare cases of Japanese patients with relapsed refractory multiple myeloma whose initially CD38-positive tumor cells spontaneously became CD38-negative. The case reports were published in Clinical [...]

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To Dye Hair or Not? Does Coloring Your Locks Cause Cancer?

BY LIZZY SMITH My hair is finally growing back after many months of baldness. During the time of “no hair” I wore wigs or caps, no exceptions. And then about 45 days post melphalan, I started seeing the first signs that my hair was growing. Hooray! Last month, we went to Costa Rica and Nicaragua [...]

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CLINICAL TRIAL: YELIVA For Relapsed/Refractory Myeloma

A new drug called YELIVA™ (ABC294640) is an oral drug that is a kinase inhibitor that has anticancer and anti-inflammatory effects. In June 2016, Duke University Medical Center (Durham, North Carolina) will begin recruiting about 56 relapsed or refractory multiple myeloma patients for its Phase Ib/II study of YELIVA (ABC2940). The clinical trial will evaluate the safety and [...]

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Phase 3 Studies Show Kyprolis (Carfilzomib) Extends Progression Free Survival for Relapsed/Refractory Myeloma

At the 21st Congress of European Hematology Association (EHA), Amgen announced results from a post-hoc analysis of the pivotal Phase 3 ASPIRE study which highlighted the benefit of continued treatment with Kyprolis (carfilzomib) in combination with lenalidomide and dex (KRd) in patients with relapsed myeloma. Separate sub-analyses of the Phase 3 ENDEAVOR study further confirmed efficacy and [...]

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Patient Power: When Is An Allo Transplant Appropriate For a Myeloma Patient?

The million dollar question: When should a myeloma patient undergo an allo (donor) transplant? In this episode of Patient Power, Dr. Jatin Shah of MD Anderson Cancer Center responds.  Here, he discusses the controversy surrounding this difficult choice and the factors that should be considered first. Dr. Shah also stresses the need for multiple opinions from your medical team. [...]

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Meet Newly-diagnosed Myeloma Survivor Mehmet Akyol from Izmir, Turkey. On Living a Slower-paced, More Meaningful Life

BY MEHMET AKYOL My name is Mehmet Akyol. I am a myeloma survivor living in Izmir, Turkey, the country's third largest city. I am divorced and have a 12-year old son. My ex-wife and I still live together for our son's sake and we manage to make this arrangement work well for all three of us. For work, I am an [...]

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Myeloma 101: What is MGUS and Smoldering Multiple Myeloma?

We often hear the terms MGUS and "smoldering myeloma." But what do these two terms mean and how do they differ from those with active multiple myeloma? MGUS MGUS is the acronym for monoclonal gammopahty of undermined significance. It is generally thought that all myeloma disease begins with this MGUS precursor stage: clones of plasma [...]

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Researchers Can Better Predict Smoldering Myeloma Patients Who Are Likely to Progress to Active Myeloma

Some smoldering myeloma patients could be at ultra-high risk of developing myeloma within a 2-year window. If hemoglobin is reduced and the monoclonal-protein (M-protein) is increasing, patients may be at risk. These findings were reported at the recent ASCO 2016 conference, the largest oncology conference in the world. In the study, if hemoglobin declined at a rate [...]

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New HDAC6 Inhibitors for Treating Relapsed/Refractory Myeloma Show Activity and Lowered Side Effects

HDAC6 inhibitors are now being used with pomalidomide and dexamethasone to treat relapsed or relapsed/refractory multiple myeloma and the next generation of the drug class are showing fewer side effects. At the recent  21st Congress of the European Hematology Association in Copenhagen, Denmark, positive results from a Phase 2 clinical trial of ricolinostat were presented [...]

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Is There a “Fix” for “Chemobrain?” Psychotherapy May Help.

BY LIZZY SMITH I've written about "chemobrain" before but here I go again. I can't help pointing out that it is real because I suffer from it and sometimes I feel I need validation. So, the latest... The other night, my husband, Bill, and I went bowling with friends. We love this bowling alley, Pins [...]

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Research Team First to Identify AF1q Protein Associated with Myeloma Extramedullary Disease (EMD)

A group of researchers from the University of Louisville, Japan and Austria are the first to identify a protein, AF1q, associated with multiple myeloma and a condition that occurs in approximately one-fourth of very aggressive multiple myeloma, extramedullary disease or EMD. Extramedullary disease is when myeloma leaves the confinement of the bone and presents itself [...]

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Checkpoint Inhibitor Pembrolizumab (Keytruda) + Lenalidomide + Dex in Patients With Newly Diagnosed Myeloma

This Phase III clinical trial in Salt Lake City is currently accepting approximately 640 newly diagnosed and treatment-naive myeloma patients who are not eligible for an auto stem cell transplant. Its purpose is to compare the efficacy of lenalidomide and low dose dex with pembrolizumab (Keytruda) to that of lenalidomide and low dose dex without pembrolizumab [...]

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Meet Myeloma Survivor Karen Foster. Her Tips of Coping & Thriving

BY KAREN FOSTER, Myeloma Survivor I am Karen Foster and I live in Olathe, Kansas, a suburb of Kansas City. I am married to my wonderful husband of 32 years. We have one daughter and three fabulous grandchildren (two boys and one princess). Prior to getting multiple myeloma, I was a workaholic until I underwent a stem cell transplant in December 2013. I was a [...]

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Sea Squirt (Aplidin) Clinical Trial Results Are Promising for Treating Relapsed/Refractory Myeloma

Not long ago, we reported that the novel drug Aplidin (plitidepsin) was showing promise in treating relapsed myeloma. The drug's developers presented at ASCO 2016 about this drug, which is derived from the sea squirt Aplidium albicans. Among the 18 patients treated with plitidepsin plus bortezomib (Velcade) and dex, 10 of them -- or 55% of the [...]

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CLINICAL TRIAL: Phase I/II Study of Oral Inhibitor for Relapsed/Refractory Myeloma

Karyopharm Therapeutics is conducting this clinical trial, a first-in-human, multi-center, open-label clinical study with separate dose escalation (Phase 1) and expansion (Phase 2) stages to assess preliminary safety, tolerability, and efficacy of the second generation oral XPO1 inhibitor KPT-8602 in patients with relapsed/refractory multiple myeloma. The study is currently open and accepting approximately 116 patients. The [...]

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And it Begins! Day 1 of Daratumumab Infusion. Lizzy’s Story of Trying the (Hopefully) New Myeloma Wonder Drug

BY LIZZY SMITH Last summer, I heard of Daratumumab (Darzalex), a potential ground-breaking new wonder drug in treating myeloma. What is Daratumuab? According to the latest results presented at ASCO 2016, the treatment is very promising. You can read it here. Here's a description on how it works: This is a human CD38-directed monoclonal antibody indicated [...]

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Darzalex (Daratumumab) Shows Amazing Results In Treating Refractory Myeloma

According to information presented at ASCO 2016, Darzalex (daratumumab) reduced the risk of myeloma disease progression when taken with Bortezomib (Velcade) and dex. This new drug received approval from the FDA in November for use by itself among patients who had received at least three prior treatments. In a late-stage clinical trial, one group received Velcade and dex, [...]

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All Oral Ixazomib Combo Shows Early Success for Newly Diagnosed Myeloma Patients

A study testing the all oral combination of ixazomib, cyclophosphamide, and dexamethasone showed that patients with newly diagnosed multiple myeloma responded well to the experimental treatment regimen. “With a median follow-up of 13 months, [ixazomib cyclophosphamide, dexamethasone] is an active, all-oral, IMiD-free proteasome inhibitor based combination for frontline treatment of myeloma,” said presenter Martha Lacy, [...]

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CLINICAL TRIAL: Isatuximab Appears Effective in Relapsed/Refractory Myeloma

A second anti-CD38 monoclonal antibody is making its way onto the myeloma treatment scene. A Phase I/II clinical trial for a monoclonal antibody that targets CD38 has opened in Salt Lake City using SAR650984 (Isatuximab) to test safety and effectivity of the new drug. About Early Results of Isatuximab Isatuximab monotherapy, which is administered intravaneously, appeared [...]

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Lenalidomide Maintenance Therapy Improves Overall Survival for Myeloma Patients

While several clinical trials have demonstrated that maintenance therapy with lenalidomide (Revlimid) reduces the risk of disease progression in patients with multiple myeloma, there have been no definitive results regarding overall survival. While some previous studies found that maintenance lenalidomide after autologous stem cell transplant improved overall survival for newly diagnosed multiple myeloma patients, others [...]

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Life Advice and Musings from Mom, Wife & Myeloma Warrior, Stephanie Holmberg

BY STEPHANIE HOLMBERG I am Stephanie, a myeloma survivor from Edmond, Oklahoma. I am married to my husband, Lee, and we have a nine year old daughter, Harper, and seven year old son Gunnar. We also have three dogs: a 13 year old mini doxie, Luna, a five year old schnoodle, Mable, and our newest [...]

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The Lion, the Gazelle & the Pesky Myeloma Cell. High Risk Disease and What to Do About It

BY LIZZY SMITH Every morning in Africa, a gazelle wakes up. It knows it must run faster than the fastest lion or it will be killed. Every morning a lion wakes up. It knows it must outrun the slowest gazelle or it will starve to death. Not long ago, I heard Dr Rafael Fonseca of Mayo [...]

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Patient Power: Can High-Risk Myeloma Patients Become Refractory to Certain Monoclonal Antibodies?

There is much hope and excitement with the newly-approved myeloma drug, daratumumab. But can refractory, high-risk patients become refractory to that, too? Dr. Jatin Shah from the University of Texas MD Anderson Cancer Center, answers this question via Patient Power. He discusses promising treatment options in clinical trials, specifically related to immunotherapy and checkpoint inhibitors. You [...]

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CLINICAL TRIAL: Immunotherapy Developed at Roswell Park to Treat Newly Diagnosed Myeloma Patients

Early-stage clinical trial at Roswell Park will assess whether novel SurVaxM vaccine is safe and effective treatment option for patients with multiple myeloma An immune-based therapy developed at Roswell Park Cancer Institute (RPCI) is moving forward with its third clinical trial. The early-stage clinical trial will assess whether SurVaxM — a cancer vaccine developed at [...]

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Can We Myeloma Patients Starve Our Cancer? Part 1 In Series

BY JEAN LAMANTIA Can I Starve My Cancer? This is an important question that many people ask when faced with a cancer diagnosis.  I first heard this over 20 years ago, when I was doing my clinical dietetic internship. The standard answer at the time was “no, you can’t starve your cancer without starving yourself.” [...]

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Pomalidomide + Dex Effect for Relapsed/Refractory Myeloma Who Have Poor Prognosis

Pomalidomide plus low-dose dex should be a standard of care for patients with relapsed/refractory myeloma who have a poor prognosis, says results of the phase 3b STRATUS trial. Results were recently published in Blood. Because patients with relapsed/refractory multiple myeloma have poor prognosis, researchers sought to evaluate the efficacy and safety of pomalidomide with low-dose [...]

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Tips for Staying Sun-safe During Summer Months (This is Crucial for the Myeloma Patient!)

BY LIZZY SMITH The Journal of the American Academy of Dermatology’s recent study shows that a majority of Americans do not know how to properly apply sunscreen. You can read it here.  Even those with a history of skin cancer are not as savvy as one might think. And we myeloma patients must be extra vigilant in protecting [...]

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