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KLilleby.jpgPeople with multiple myeloma may experience symptoms related to their disease or their chemotherapy regimen. Hypertension, fluid retention, or diabetes mellitus may be affected by dexamethasone. Depression or fatigue might lead to loss of appetite and weight loss. Iron deficiency could be due to blood loss or malabsorption from proton pump inhibitors which could lead to anemia, fatigue, decreased level of activity and weakness. 

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Some helpful tips for a healthy diet while dealing with all aspects of multiple myeloma are: Low salt, low fat, high potassium, high fiber (30 grams per day- found in beans, whole grains, brown rice), 8-10 servings of fruits and vegetables daily, small amounts of lean red meat, fish or poultry, vitamin D (800-1000 IU) and calcium (1000-1200 mg daily), iron 8 mg per day, avoid high fat red meat or processed meat (for colon health). 

at frequent small meals, avoid large meals close to bedtime, keep hydrated (2-3 liters of fluids per day taken early in day and avoid drinking fluids within 2 hours of bedtime), moderate alcohol intake if desired (1-2 glasses wine or 1 beer or 1 cocktail). Oral hygiene (brush and floss) after meals and at bedtime is important to reduce risk of infections and oral cancer. Always check with your doctor, nurse practitioner or nutritionist for recommendations specific to your condition.

11 Comments

Adding the right fiber and staying away from processed (pre-digested) foods can help lessen insulin response levels.

My understanding is it really boils down to glycemic load foods, not just how much sugar the carbhodyrates break down into, but what kind of insulin spike they ultimately deliver. But I don't know the specifics? Can you clarify?

Any hints to reduce stomach cramps, gas and diahrrea?

I was wondering, does any suffer from severe muscle spams? How about involuntary muscle jerks? How about the muscles just locking?

I have had all kinds of tests and wa yold they can't be explained. I had a stem cell transpant 4 years ago but hd to start Valcad 6 months ago.

The spams are the worst from my hips to my toes but I also have thm in my back, arms, face, etc.

My husband has these leg spasms, his Dr. told him it was due to the chemo he had prior to the 2 stem cell transplants (6 years ago), she said it is Restless Legs Syndrome. It is much worse at night, he takes a couple of low dose valium and it helps. He also takes melatonin at night along with benadryl to help him sleep.

I have muscles spasms as well on the top of my arms and thighs legs it comes and goes I'm not on any treatment as I have smouldering myeloma the specialist couldn't see anything with the scans I had

My sympathies on the spasms to everyone. Yes, my husband had spasms prior to being diagnosed with MM that was due to those spasms and a compressed fractured L4 At that time many narcotics perscribed and lots of tests then large dosage of "dex" given.And no spasms have reoccured as of now. The bad pain is still being eased with dilodid and also takes Lorazepam,5mg for spasms,anxiety. We are now on the 11th day of Revlimid. God bless you all .

Any hints to reduce stomach cramps, gas and diahrrea?
Iron deficiency

I believe it all ...
I believe it all comes down to what you put in? your body. You may lose muscle but mainly fat as long as you keep a regular diet. High-Protein, Low-Carbs.

I am in renal failure with the myeloma which requires low potassium. Any thoughts on that?

I was in renal failure also in 2012 after taking antibiotic Cipro and Revlamid. The doctors could not decide which one made me so very sick.
You need to consult a nephrologist and also a Myeloma Specialist, not just the oncologist-hematologist.
The two should be able to come up with a satisfactory solution.
Best wishes
Liz in Pa.

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The term cancer survivor applies to any person diagnosed with cancer.  There are currently 12 million cancer survivors in the United States with 68 % of those expected to live at least five years.  Survival rates for patients diagnosed with Myeloma have improved significantly in the last decade due to improved diagnostics, treatment options and supportive care.   Living and feeling well while surviving cancer is a universal goal for cancer survivors.  Wellness requires an individualized approach with a focus beyond the just the cancer diagnosis including tailored screening, health promotion and management of other illnesses.    A number of health care providers from many disciplines may be involved in the continued care of patients living with Myeloma.  Patients and caregivers play a critical role in planning, monitoring and modifying their survivorship plan.

There are several recommendations for taking an active part in living well after the diagnosis of Myeloma - a survivorship plan.  Understanding the diagnosis of Myeloma, tracking treatment plans and outcomes including laboratory results, results of radiology testing, and any side effects of treatment will provide a quick summary of the treatment history which can be shared with all members of the health care team.  Maintaining a current medication list, contact information for all health care providers and copies of any reports or recommendations will help to integrate these recommendations into a healthy lifestyle.  Seeking additional recommendation for a healthy diet, exercise guidelines specific to the Myeloma patient, recommendation for health care screening for other types of cancer, heart disease, diabetes, and osteoporosis is encouraged.  Organizing this information, assembling a health care team that includes physicians, nurses, dieticians, social workers, financial counselors, and other Myeloma survivors will provide the best opportunity to live and feel well.  Many resources for understanding the diagnosis and treatment of Myeloma and suggestions for staying well can be found on the International Myeloma Foundation website:  www.myeloma.org

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Beth Faiman, CNP

YES!  The kidneys play an important role in the health of each individual.  Their main function is to clear toxins and waste from our bodies. Approximately 25% of individuals with multiple myeloma (MM) will have temporary or permanent damage at some point during their illness.

What health conditions or medications can affect the kidneys?

Many health conditions (aside from MM) can cause the kidneys to work less efficiently. These are too numerous to list. However, more common conditions include: longstanding diabetes, high blood pressure, other plasma cell disorders such as amyloidosis, and dehydration. Enlarged prostate glands or kidney stones can also cause kidney damage.  Some medications can harm the kidneys.  These include non-steroidal anti-inflammatory agents (such as Motrin and ibuprofen), certain intravenous antibiotics (gentamycin, vancomycin), and water pills (called diuretics). Bone-building drugs called "bisphosphonates" can also damage the kidneys, so your healthcare provider will monitor your kidneys with each dose.  Intravenous contrast dye when given before a CT scan procedure can also harm the kidneys of MM patients. Therefore, this must be given in special situations, and the MM patient must drink lots of fluids.  

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How does the MM affect ones' kidney?

Basically, there is a network of cells in the kidney called the glomerulus.  This is responsible for filtering "light chain" proteins before these are excreted in the urine. Too many immunoglobulins or urinary light chains can easily overwhelm the kidneys until they are unable to do their job.  The increased proteins in the urine can "clog" the kidneys and lead impaired kidney function.  

Does my healthcare provider monitor my kidneys, and what should I look for?

Your healthcare provider should be checking your serum creatinine levels each month. The normal range varies, but is generally between 0.5-1.4mg/dL of blood. If the creatinine begins to increase, your healthcare provider will review your medication list and see which medicines may have caused the rise in creatinine.  Then, he or she will determine if you have become dehydrated by not drinking adequate amounts of fluid (usually one needs about 64 ounces of fluid per day), or as a result of using water pills (diuretics) to manage your blood pressure or swelling. An elevated creatinine may be a sign that the MM is becoming active, but it may also be a result of a separate health condition.  

Notify your healthcare provider if you have any pain during urination, or change in your urinary habits. Let he or she know if you have developed any pain or blood in the urine. Drink lots of fluids to stay well hydrated. Eat a well-rounded diet with fruits, vegetables and proteins unless you have been placed on dietary restrictions. And, as always, discuss any medications and supplements with your healthcare provider to make sure these do not interact with your cancer treatment.

Best wishes for a safe, healthy and happy 2012!!

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Depression is a major side effect that can affect you as a myeloma patient at some point in your course of treatment. Depression in a myeloma patient undergoing treatment can be challenging to diagnose as various side effects such as fatigue, pain, and anemia may appear similar in both conditions. Your healthcare team will need to distinguish the difference between the symptoms associated with your myeloma treatment or clinical symptoms of depression. While feelings of sadness and anxiety are typical with the diagnosis of cancer, 

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it is imperative to discuss these symptoms with your healthcare team so they can help you appropriately. Signs and symptoms of depression include persistent sadness, anxious mood, sleeping too much, or too little, decreased appetite, weight loss or gain, restlessness, and feelings of despair or denial. Chronic disease such as cancer, medication side effects, gender, family history, situational events, biologic factors, and cognitive changes, such as poor self-esteem and negative thinking patterns, are all risk factors for depression.

Screening for Depression. There are several questionnaires available that your provider may use to assist in screening for depression. Once depression is correctly diagnosed, your clinician may find it necessary to start an antidepressant, or may refer you to a specialist such as a psychiatrist who specializes in oncology patients. It is also important to differentiate between depression and anxiety. If you have an oncology social worker available to you, they can be a valuable resource to assist you with related challenges of financial difficulties, such as insurance and housing issues, as well as social support. Many social workers are licensed counselors and can provide their services for patients and family members through counseling and group support sessions, usually without charge. Many cities also have local chapters with disease specific support groups such as monthly multiple myeloma support group meetings.  To find a local support group (or to start one in your area) please all the IMF Hotline at 1-800-452-CURE for assistance (818-487-7455 outside of the US and Canada.)  These meetings can be beneficial for both patients and caregivers. The NLB recommends asking the following questions during routine screening at all provider encounters to detect depression or other cognitive changes:

  • Over the past two weeks have you felt down, depressed or hopeless?
  • Over the past two weeks have you felt little interest or pleasure in doing things?

Please be sure to report any of these symptoms to your healthcare team.

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Steroids have been in integral part of myeloma therapy for many years and they continue to be used today, often in combination with novel agents (thalidomide -Thalomid, lenalidomide - Revlimid and bortezomib - Velcade).Steroids can cause a wide variety of side effects affecting nearly every system of the body.Education, early identification and management of these side effects can contribute to the success of steroid-containing regimens for the treatment of myeloma and other associated disorders.

Possible Side Effects

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One of the most common side effects associated with steroid use is difficulty sleeping (insomnia).Steroids should be taken early in the morning so that the medication will wear off by evening.It is possible some pharmacologic intervention may be necessary, including taking a hypnotic or sedative.Other causes of insomnia need to be considered as well, such as pain.  You should be aware of the signs and symptoms of infection, as steroids may mask the signs of infection.our provider should be notified if you are experiencing fevers (>100.5), shaking chills with or without fever, dizziness, shortness of breath or low blood pressure. 

 Medications to prevent infection, such as antibiotics or antiviral agents, may be prescribed.  You should also be aware of possible fluid retention (edema/swelling) in your legs or feet.  If you experience edema, elevate the affected limbs, use compression stockings, and increase activity.  If necessary, pharmacologic intervention with diuretics may be recommended.  Another side effect of steroid use is heartburn (dyspepsia).  Steroids should be taken with food and irritating or acidic food should be avoided.You may also benefit from over the counter or prescription medications, like Protonix.

These are just a few of the potential side effects associated with steroid use.  Contact your healthcare provider if any of the side effects are not manageable.  They may prescribe additional medication or modify your treatment plan.  You should never stop taking steroids without notifying your provider.

You might also be interested in: "Steroid-Associated Side Effects in Patients With Multiple Myeloma: Consensus Statement of the IMF Nurse Leadership Board"

1 Comment

thank you so much for your information. I take 40mg of Dex. with Velcade on a weekly basis. On and off since 2012, at diagnosis.
Hunger, weight gain and insomnia are all part of it but as long as the meds help, I am not complaining.
Best wishes
Liz in Pa

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Myeloma renal disease is a condition caused by long term effects of multiple myeloma.  "Renal" refers to the kidneys, which is one of the many body systems that can be harmed by multiple myeloma.  The disease creates a great burden on the kidneys in a variety of ways.  You are probably aware that the malignant plasma cells in the bone marrow  produce an antibody that is released into the bloodstream.  This antibody is a protein and there can be very high levels of protein in the blood of myeloma patients.   

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Additionally, multiple myeloma can cause the breakdown of bone and the subsequent release of excess calcium into the bloodstream.  The kidneys work to filter the body's blood supply and the excess protein and calcium that are present in the blood can put a "strain" on the kidneys.  They have to work exceptionally hard to filter the abnormally high levels of protein and/or calcium in the blood.  These conditions can cause "renal dysfunction" or "renal insufficiency," which means that the kidneys are no longer able to handle their jobs.  In severe cases, this can lead to renal failure, which means the kidneys are shutting down.  Patients may have to undergo dialysis so machines can perform the blood filtering function for the body.

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How can you help to protect your kidneys?  An important thing to remember is that you should not let yourself become dehydrated.   It is crucial that you stay well hydrated (e.g., making sure you drink enough plain water) as this will continuously flush your kidneys which will help them function properly.   You should avoid taking NSAIDs (non-steroidal anti-inflammatory drugs) such as ibuprofen and naproxen and you should avoid IV contrast dye (particularly the IV dye used with CT scans) as these substances are taxing to the kidneys.  You will want to seek advice from your oncologist before using these substances.  

If it is noted that you are hypercalcemic (have a high level of calcium in your blood as determined by a blood test), then your physician will want to treat you without delay to lower your calcium level so that the kidneys are not damaged.  We are also going to check your kidney function before administering bisphosphonates, which are the bone-strengthening agents used in multiple myeloma patients.  These drugs are excreted by the kidneys so if your kidneys are not functioning optimally, you may need dose adjustments of these drugs or your physician may choose not to administer these agents.

It is important to note that those patients with myeloma renal disease can take actions to relieve some of the burden on their kidneys.  There are many treatment options available for myeloma patients and many patients will also see an improvement in their kidney function as the disease is controlled.

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Thanks, for the info,very enlightening and something I will keep an eye on. I,ve just had a transplant [ 4 weeks 2day] tests next week so I,II see where I,m at. Thanks again.
Michael

My nephrologist and literature I have read talk about the importance of going light on red meat, that the kidneys have trouble processing red meat. Chicken, fish, pork have been staples on my diet. However, the nephrologist did not mean to eliminate it altogether. Maybe once or twice a week, max. I have one kidney so pay attention to all the caveats. Has been holding well for close to ten years, but luckily my numbers have been low and I only started Revlimid two months ago. Light dose.
Ed

Hi Ed,

Your post is most helpful because my husband also has one kidney. He was diagnosed with multiple myeloma in January of this year, and has been receiving both Velcade and Dexamethasone for treatment. While his kidney function was fine at the time of diagnosis, just last week his creatinine level shot up to 3.3. Tomorrow we see a nephrologist for the first time. I am interested in knowing if any of your doctors, particularly the nephrologist, have expressed more concern over the one kidney. Are the precautions more tighter, or does a single kidney have any bearing on outcomes? Good to hear you have a good ten years before starting on Revlimid. Thanks Ed for any info you can share.

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Have you found yourself not leaving the house or being too far from a bathroom out of fear of having an "accident"?  Diarrhea is defined as an abnormal increase in the amount of fluid in stool.  There are many causes for diarrhea.  Some people have baseline disorders like Crohn's Disease, Irritable Bowel Syndrome (IBS) or allergies that result in diarrhea.  For those receiving treatment for MM, diarrhea can be the result of irritation to the bowel lining from chemotherapy or infection.  Bortezomib use is commonly associated with diarrhea where thalidomide and lenalidomide are more commonly associated with constipation.

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Severe or prolonged diarrhea can result in the loss of important electrolytes like potassium.  The increased loss of fluids can cause dehydration and kidney problems. Bowel incontinence, or uncontrollable diarrhea, can lead to emotional distress and limited freedom.  It may also result in the need for a change in treatment, dose, or schedule.

Darrhea should always be reported to your health care provider. Diarrhea with abdominal cramping may indicate an infection and the need for additional treatment. Clostridium difficile (C. diff) is an infection that can be associated with symptoms of diarrhea and abdominal cramping. People who have been receiving antibiotics and/or chemotherapy are at greatest risk for this infection.  Ironically, the treatment for this antibiotic-related infection is an antibiotic (i.e. metronidazole or vancomycin).  Symptom management may include hydration and electrolyte replacement.  It is important to stay well hydrated to replace the fluid that is lost. If stool sample is negative or there is no concern for infection, over the counter medications to control diarrhea may be started.  Loperamide (Immodium) is used to slow down bowel motion to allow for more fluid to be absorbed from the bowel, thereby reducing diarrhea.  Fiber binding agents (i. e. Metamucil or Citrucil) act like a sponge to absorb extra fluid. 

Diarrhea is not an easy topic to discuss and bowel incontinence can be embarrassing.  Despite this, diarrhea can result in hospitalization, change in treatment, and reduced quality of life.  Do not hesitate to discuss with your health care provider even between scheduled visits.

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You have many items on the "To Do" list, but you just do not have the energy to get them all done.  Activities that normally take you no time take all day to complete.  You are experiencing fatigue.  Fatigue is subjective and very individual.  In simplest terms, it is the feeling of being more tired than the level of activity exerted. Fatigue often interferes with day to day functioning.

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Fatigue may be related to medical conditions such as anemia (low hemoglobin), low thyroid function or infection.  It is one of the most commonly reported symptoms at the time of diagnosis of multiple myeloma.  Active myeloma, treatment and side effects like dehydration or uncontrolled pain cause fatigue.  Steroids are often used in myeloma treatment.  They initially can cause insomnia and hyperactivity with a rebound effect of being fatigued.  Depression also contributes to fatigue.

Your health care provider may ask you to rate your level of fatigue at baseline, or the start of treatment, and then throughout your treatment.  It is important to offer the information and discuss your level of fatigue with your healthcare provider.  If the level of fatigue is out of the norm for your level of hemoglobin or cycle of treatment, this may lead to more testing to find another cause.   

Managing fatigue can be done by taking a proactive approach.  If fatigue is due to a medical condition like depression, anemia or infection, treatment of the underlying condition will improve energy.  Maintaining proper nutrition, hydration and participating in a regular scheduled exercise program have also been found to be beneficial to improve energy.   Becoming aware of how you react to medications will help in planning activities and adjusting your schedule for times when you will have more/less energy.  Fatigue may not be life threatening, but it alters quality of life and should be discussed with your health care provider.

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1 Comment

i hsvr had multi mryeloms for 2-3 yrs taking no medication\
\robert

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Deep vein thrombosis (DVT and Pulmonary embolism (PE) are the most common types of thromboembolism or thrombosis (blood clots).The risk of developing a blot clot is increased in any patient with cancer for a number of reasons. Cancer cells, including myeloma cells, release substances that may promote thrombosis.  MM patients may be less active, may require hospitalization, often have other chronic illnesses such as diabetes, coronary artery disease or high blood pressure hypertension), and commonly receive medications to treat these chronic diseases which can increase the risk of developing a blood clot.  Surgical procedures such as placement of a central venous catheter may also increase the risk. Some patients may have a family history which puts them at increased risk of thromboembolism.  Smoking, obesity and a sedentary lifestyle may also increase the risk of a blood clot. 

Prevention of thromboembolism

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The best strategy to reduce the risk of thromboembolism is to screen each patient carefully for individual and disease related risk factors.  Patients with any type of cancer, including MM are considered to have one risk factor as a result of the diagnosis itself.  Treatment for MM with certain drugs such as thalidomide, lenalidomide or doxorubicin may increase the risk of thrombosis, particularly when combined with higher doses of dexamethasone (4 days in a row followed by 4 days off).  Reducing the dexamethasone dose to once weekly has been shown to decrease the risk of thrombosis while providing effective MM treatment.    Effective treatment of the MM may reduce the risk of thrombosis.

The International Myeloma Working Group (IMWG) suggests prevention strategies for patients with increased risk of thromboembolic events. For individuals with only one risk factor a daily dose of aspirin (81 or 325 mg) is recommended.  Use of prescribed anticoagulation medications such as low-molecular weight heparin  or warfarin (Coumadin) is recommended for patients with more than one risk factor.  These treatments do require close monitoring to be sure they are effective and no other side effects such as bleeding occur. 

What can you do to reduce your risk?

Notifying your health care provider for any symptoms that may indicate thromboembolism such as painful swelling in an extremity (DVT) or rapid onset of chest pain and shortness of breath (PE) will allow immediate treatment and can reduce the risk of more serious complications.  Daily physical activity, avoiding sitting for long-periods of time, regular review of medications, weight loss and smoking cessation can also reduce the risk of thrombosis. 

Sandra E. Kurtin, RN, MS, AOCN, ANP-C
Hematology/Oncology Nurse Practitioner
Arizona Cancer Center
Clinical Assistant Professor of Nursing
Clinical Assistant Professor of Medicine University of Arizona Tucson, Arizona

Editor's Note:  Use of any medications, even "over the counter" non-prescription medications and/or dietary supplements should always be discussed with your health care professional before taking any action.

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Miceli_Teresa_S Mayo 12.10.08.jpgMonitoring for infection is crucial for people with MM. For many people, their MM diagnosis came after experiencing pneumonia, shingles or some other infection. Myeloma compromises the immune function by disturbing the normal production of infection fighting antibodies. Therapies to treat myeloma also have the potential to compromise a person's ability to fight infection. As a result of compromised immune function, people are at risk of infection that could result in hospitalization or even death.

Awareness - Infections can occur from sources you already have in your body. For example, varicella zoster, or "shingles", is the reactivation of the herpes virus that causes Chicken Pox. Once exposed, the virus remains in our body for a lifetime. At times of immune compromise, it can become active. Infections can also be acquired from other people, food and water sources and environmental contaminants.

Prevention - There are ways to protect against infection. The simplest but most valuable is hand washing. It sounds too easy to be true, but hand washing with soap and water or liquid anti-septic solutions can reduce your exposure risk. At times when you know you are at greater risk due to treatment, avoid large crowds. When on treatment, your health care provider may prescribe preventative antibiotics. It is a common practice for patients receiving bortezomib (Velcade) to take an antiviral medication such as acyclovir to prevent "shingles".

Action - You are your own best advocate. If you develop any symptoms that indicate you have an infection, you should contact your health care provider. Symptoms may include fever, shaking chills, sore throat, diarrhea, sinus drainage or productive cough that is green in color, or shortness of breath. Skin wounds that are red, tender or have drainage may be infected. Shingles becomes active in a nerve track (dermatome) and tends to be a painful, red rash that has pimples, or fluid filled pustules. Often times the start of this rash is mistaken for a spider bite, but instead of getting better, it worsens. The earlier treatment is started, the better chance there is to reduce long term pain issues. Always contact your health care provider if you have any symptoms that may indicate an active infection.

Teresa Miceli, RN BSN OCN
BMT Nurse Coordinator
Mayo Clinic - Rochester

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1 Comment

Thank you so much for your information.
It is most helpful.
Just found this great site.
Keep up the good work.
I was diagnosed with MM in 2012, now on Velcade and Dex.
Revlamid Or Revlamed made me very ill. Renal and Lung failure for 2 weeks. Needed 4 additional weeks in a facility to recover.
Best wishes
Liz in Pa

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  • Cancer Survivorship - Living Well After The Diagnosis, Your Survivorship Plan
  • Should I worry about my kidneys if I have multiple myeloma?
  • Depression
  • Managing Steroid-Associated Side Effects

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