Multiple Myeloma

Question:

The symptoms of multiple myeloma can vary greatly from patient to patient. What were your symptoms at the onset of your disease? Submit Your Comment

Comment from: Makethegooddayscount, 55-64 Male (Patient) Published: May 19

I was basically symptom free until a sharp pain in my legs would happen when sitting for over an hour. The pain intensified. I was diagnosed with hamstring injury. Then a nerve issue. Finally an MRI showed multiple myeloma (MM). High risk, stage 3. I’m 55, male. I have five kids, three small children. Just finished my first month of chemotherapy. I will finish radiation treatments in four days. No idea how long I’ll live. I’m feeling ok. Some days are better than others. My main caregiver is my wife. Thank goodness for her.

Comment from: Wwcg, 45-54 Male (Patient) Published: August 27

I was diagnosed with a solitary extramedullary plasmacytoma in my left axillary lymph nodes. This is not multiple myeloma, but a close derivative. It is a plasma cell dyscrasia in which a soft tissue tumor of malignant plasma cells forms. My symptoms we're almost benign. I had the feeling that I had pulled a muscle in my left shoulder weight lifting. In fact that is what the general physician thought as well, as he looked at the swollen area under my arm. Biopsy, SPEP (serum protein electrophoresis) test, and blood tests proved otherwise.

Comment from: mumof5, 35-44 Female (Patient) Published: February 19

I am 43, mother of 5 daughters. I have been having rib pain for a couple of years and was sent home with pain relief. In September 2019 I hurt my hip at the beach and thought I had pulled something. By this point I had pain in my hip and pain in my ribs. By chance a doctor ordered an x-ray and I went to the hospital with my daughter because she said I needed to go to the hospital because of the pain. Boom, I was admitted to the cancer ward, and after many tests I was diagnosed with multiple myeloma.

Comment from: Jane, 65-74 Female (Patient) Published: January 21

I was just diagnosed with smoldering myeloma but all the results of tests have not been completed. My back hurts and I am very tired, plus I had pneumonia twice in the last 3 months.

Comment from: Tee smiles, 45-54 Female (Patient) Published: November 26

I am of age 42 with back pain that went from mild to severe over 7 months. I was ignored 3 times in Accident and Emergency and again for the 4th time despite not being able to walk. Eventually a 17 cm tumor was removed from my spine but it left me paralyzed. I had intense chemotherapy and radiation twice for multiple myeloma. I was given 2 years; am still here doing well 7 years on. Stay positive, laugh often. Focus on what you can do and don't play on what you can’t do.

Comment from: Jeffmandy196, 55-64 Male (Patient) Published: August 31

I had a stem transplant in 2019, for multiple myeloma, but have severe pain in my right hand rib cage 2 years later.

Comment from: Mike sr, 55-64 Male (Patient) Published: May 04

I was having stomach problems and feeling sickly, so I went to my doctor’s and was treated. A few years later my stomach cramps came back, so more blood work. This time my potassium was off. My wife told them of my mother dying of intestinal cancer, so they did further blood work, called me in, told me it might be cancer, and set up an appointment at a cancer center. There I was told I have multiple myeloma stage 3.

Comment from: lunalady, 45-54 Female (Patient) Published: September 17

Doctors kept dismissing my rib pain as inflammation. One finally paid attention to all of my prior lab work from over a decade, which showed high protein levels in the blood, unexplained anemia, and multiple bacterial infections. Pneumonia and sepsis at age 44... went from no symptoms to sepsis within 12 hours. Bloodwork and urine indicated multiple myeloma, and bone marrow biopsy confirmed it. I also have microcalcifications in breasts, which some research reads may be related to myeloma. I still have rib pain.

Comment from: Dixigirl 80, 55-64 Female (Patient) Published: January 14

Back pain was my symptom of multiple myeloma. Eventually found out I had a broken back. I had compression fractures at T7 and T8, 50 percent and 25 percent respectively, requiring surgery. I had had a bad lower back injury in 2011 and so I thought this was just another injury. Walked around with it from October until December. Ouch.

Comment from: Dixie D, 55-64 Female (Patient) Published: July 16

I was very tired, had no energy, and pain in my neck. I was diagnosed with multiple myeloma and a fist size tumor was found in my neck. I started radiation, then had stem transplant in 2010, and went into remission several months later. It came back in 2017, now I am taking Ninlaro, it has lots of side effects.

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Comment from: Webbo, 65-74 Male (Patient) Published: July 07

I got a slight cut during wet shaving. It would not stop bleeding for quite some time. I went to the doctor who advised a full blood test. Results came back with high paraproteins. Bone marrow biopsy confirmed type M multiple myeloma. I did not have any other symptoms. Now after thalidomide treatment and a stem cell transplant I am in remission, and have been so for two years. I am on a myeloma 11 trial until I relapse.

Comment from: sofraser, 75 or over Female (Caregiver) Published: April 21

My mom was 79 when she died. She went into the hospital on a Friday and died the following Wednesday. She was diagnosed on that Saturday of advanced multiple myeloma cancer, because of elevated calcium in the blood stream, and low blood count, and health was not good we were told nothing could be done. Prior to this, unknown she was battling with cancer, she was suffering from sinus infection that would not go away, headaches, knee problems, and eventually was having back pain for 3 or 4 weeks, which became very severe (nerve block was done, followed by hair-line fracture which was cemented, other fracture was found). While in the hospital it was found out that her brother also died of multiple myeloma cancer, which also began with back problems, suffered for seven years (radiation/chemotherapy), nothing worked, and died when he was 63.

Comment from: Jazz of San Diego, 65-74 Female (Patient) Published: September 10

I had no new symptoms when I went in for my regular check up with my doctor. She ran a blood test and noticed an increase in my anemia. I had been on the edge, but now I was below the edge. She sent me to a hemotologist. I had no idea that she was checking for everything from anemia to leukemia or multiple myeloma. I was thinking "iron" pills. I had a bone biopsy that day and got the results about three weeks later at my next available appointment. It was a shock, and I was not ready for it. I was told that at this time it is rarely curable but treatable. No time frame of survival was given, and I was not able to ask any other questions as I had never heard of multiple myeloma. After three days of shock, I went on the web and gathered all the info I could and got my grown sons to help me look up more info. My whole family was in shock. I have been undergoing treatment for almost two years now, and I am tired, I have kidney problems, and I have one blood clot so far. So I am doing OK. I do go to a support group in San Diego, and it has been more then helpful.

Comment from: First Daughter, 45-54 Male (Caregiver) Published: September 10

My dad was 51 when his multiple myeloma was diagnosed in stage III. He had been very tired for quite some time. (One ignored hallmark of the disease manifested about three years previously. He had always donated blood but was refused at about 48 because his iron was low. No one advised him to immediately check into that. As a young and strong man, his iron should not have been that low ever) However, he was a firefighter getting ready for retirement, so, we all believed he would be much better after a few months in his dream home in Wisconsin. He became more and more exhausted. Finally, when he was sleeping close to round the clock, my aunt forced the issue that he go to the hospital immediately. (She was a nurse.) He was diagnosed within one day as his kidneys were shutting down. He lived beyond any expectation of the medical community (some good years). He worked hard to remodel his dream home, got to meet a few new grandchildren and died at 55. Moral: Low iron counts in an otherwise healthy younger male are never "normal." Extreme exhaustion in anyone is not always a sign of depression or fatigue. Multiple myeloma can strike any age or demographic; Dad didn't fit any of the stereotypes.

Comment from: Vbyington, 65-74 Female (Patient) Published: September 27

I have not been diagnosed with multiple myeloma (MM) yet. I was at my rheumatologist's office and was so fatigued I felt like sliding out of the chair onto the floor. I have rheumatoid arthritis, so fatigue is nothing new. He ordered more lab tests than usual and the SPEP (the serum protein electrophoresis) came back abnormal. He ordered more lab tests. Abnormal. I am being referred to a hematologist so I'm not sure what the outcome will be. I am 66 years. No headaches, diarrhea, constipation, or confusion, but I do have back problems. I've herniated a disk or two and fell and fractured a vertebra in 2005. I thank those of you who took time to share your experiences. This is all new to me as well.

Comment from: texasgirl, 45-54 Female (Patient) Published: December 14

I was diagnosed in Nov 2010. I had a pain in my right upper arm I thought was a muscle tear since June 2010. It got more and more painful until I could not lift my shoulder. I got an MRI which showed a 3cmx3cm lesion on my glenoid. I was referred a doctor. After blood, urine, bone marrow tests I was diagnosed with MM. The staging is not an exact science. I have some numbers in stage 1, others in stage 2, but a serious lytic lesion in my scapula. We are starting prelim chemo of velcade/dex to be followed by an autologous stem cell transplant/heavy chemo. I also had 10 light radiation treatments to help with the pain. Hope to push this out for years!!

Comment from: Turlundie, 65-74 Male (Patient) Published: March 03

I had mild anemia for over a year with no symptoms. After normal colonoscopy and gastroscopy I had further blood and bone marrow tests and was diagnosed with multiple myeloma in December 2012. Starting in March I had 28 weekly chemotherapy treatments. I had no accessible veins and had a portacath which got infected 3 days later. The ciprofloxacin with which I was treated ruptured my right Achilles tendon for which I have to wear a leg brace. I then had a PICC line until September 2013 when I donated my own stem cells which were returned to me in late September through a Hickman line after massive chemotherapy the previous day. The next week was when the chemotherapy kicked in and for 6 days I felt miserable with constant watery diarrhea luckily in a private isolation room. I am taking multiple vitamins and entecavir to resolve a flare in my 40 year old hepatitis B, acyclovir to prevent shingles and Revlimid to prevent a return of the myeloma. I remain well with no symptoms although I did have a bout of liver and kidney failure due to the drug tenofovir which resolved on switching to entecavir.

Comment from: dede53, 55-64 Female (Patient) Published: June 12

I was in an MVA, hit from behind so a CAT scan of my neck was performed. It revealed several lesions in my cervical spine. So I think it was a gift that MM was discovered before I was symptomatic. My bone marrow biopsy is next week so then I can be staged and a treatment plan can be developed. I feel great so it's very hard to as they say "wrap my head" around this diagnosis!

Comment from: James, 55-64 Male (Patient) Published: June 10

I'm 60. Woke one night with heavy, cold sweats, sudden onset of severe nausea. totally dehydrated, passed-out before EMS arrived. First thought was severe food poisoning. Re-hydrated and dismissed from hospital 4 days later. Blood work looked normal. Felt really weak and no energy. wight started dropping. Exact same condition hit two months later, but happened in the morning at office. Two weeks in hospital. "M" spike showed up in blood test, but thought it was a false-positive, but also noted first signs of elevated protein "C" - I had never heard of "M" spike or Protein C; They sort of explained what they thought was going on but needed to do a spinal tap. First stage multi-myeloma. Absolutely no energy. My work involved international trade & travel. I had to take leave of absence from work. Couldn't concentrate, became confused very easily, memory loss. I feel like treatments are making some difference, but I am still amazed that I had no idea that anything was wrong until the first "episode" hit. If this had happened when I was out of the country, I doubt I would be writing this.

Comment from: Lily, 65-74 Female (Patient) Published: April 30

I had multiple infections including CMV. My blood work showed elevated protein and other abnormalities. I was feeling unusually tired. A few months later, I had a severe bout of pneumonia. I was diagnosed while hospitalized. I was told I was stage 2 to 3 and a PET scan revealed involvement in my hips, pelvis and ribs. I have started treatment.

Comment from: Dinyakay, 55-64 Female (Patient) Published: April 04

I had chronic back pain and I was unable to walk without pain. My spine fractured in 3 different places, and I also had nausea, fatigue and I was constipated. Those were my symptoms that landed me in the hospital for a month. In December, I was diagnosed with multiple myeloma. I recently had a stem cell transplant. I'm doing okay, but I still feel tired a lot and every once in awhile I get a stabbing pain in my stomach that makes me nauseated. I have had pneumonia twice and came out of it okay.

Comment from: Antima, 75 or over Male (Caregiver) Published: January 20

The few symptoms which I have observed in my father: Pain in spine, weight loss and tiredness. Few words which I would like to share with the patient & his family: Please don't lose your hope to live long. Your hope is our trust. Trust, that this is not end of life. The treatment is expensive but then old people have the right to live. When our parents gave us everything when we were young, we should also give then everything possible when they are old. They are our foundation. Please understand your parents.

Comment from: Dutchman, 75 or over Male (Patient) Published: October 28

In the summer of 2008 I was frequently quite tired and I had a lower back ache. At my annual physical I seemed to be OK. My doctor gave me pills for the backache. That pain is not uncommon when you are 78. Late September/early October I got to be very confused. My wife noted that I could not put a simple battery in a record player. My daughter noticed that I could not write my signature. On my doctor's advice my family checked me into the hospital. There it was obvious to the doctor that: 1) I was very confused, and 2) My blood pressure was over 200. I was immediately admitted. I do not remember anything for the next 5 days as a result of hypercalcemia. By the time I started to come out of this, my family knew that I had Multiple Myeloma. Nobody had ever heard of this. While I was out, the doctor took bone marrow from my hip. Even though this is painful, I have no memory of this. I spent almost a month in the hospital. After that I was first treated with Velcade IV's, twice a week, for about 4 months. Then with Alkeran and Prednisone for about 2 months. Last June 2009 my oncologist told me that the cancer is in remission. I am still being treated with Revlimid for 6 months now and receive an Aredia IV every 6 weeks. I feel reasonably good at present.

Comment from: Diane, 55-64 Female (Patient) Published: November 16

I am in shock. Two weeks ago my GP ran a routine blood test for cholesterol and then referred me to an oncologist because my blood M protein is 1. Today the oncologist said she will be running tests for multiple myeloma. She said RBC and WBC was normal. No pain and hike 2 miles every day. The tests are x-rays, 24 hour urine, and more blood tests. I feel she already knows I have multiple myeloma, but told me to continue with normal life until results. Very scared.

Comment from: Grins, 55-64 Male (Caregiver) Published: July 06

My husband, aged 63, had significant back and rib cage pain. He also lost 40 pounds without efforts to do so. His primary care physician thought he might have PMR, and prescribed Prednisone (steroid). While my husband did improve somewhat, the improvement was not remarkable as expected by the course of steroids. On referral, the doctor ordered blood tests and x-rays. Within 18 hours, my husband was diagnosed with plasma cell myeloma which was confirmed by a bone marrow biopsy.

Comment from: ss, 55-64 Male (Caregiver) Published: March 09

A loved one has been diagnosed with multiple myeloma. He has about less than 15% of it in 3 vertebra's and is currently on treatment. He has been told that after a Bone marrow transplant he would be 90% cured from what I understand this disease is treatable but not curable what is a life span for someone who has this disease at this stage can it go in remission or is it something you live with for the remaining of your life.

Comment from: Neil, 45-54 Male (Patient) Published: June 25

I went to the doctors for treatment of Hep C. After getting blood test and being told the Hep C had cleared itself the doctor said he wanted to take more blood tests as there appears to be something going on in my system. After further blood tests they confirmed I had Myeloma. I have no symptoms as yet so it is just luck they found it early. I’m just starting on treatment to help harden my bones and get regular blood tests. Hopefully I’ll be alright for a while yet. It is a shock to the system no doubt about it.

Comment from: skippy, 55-64 Male (Caregiver) Published: June 18

My brother had multiple myeloma went through all the treatments. He maintained for a short time, but the back pain forced him to use a walker at 58 years old. In April of this year he got a severe nose bleed was admitted again. He had a test and it was determined that the calcium levels were high which meant the cancer was going to his brain, he got crossed eyed, confused and went downhill very fast. He passed away June 4, 2010.

Comment from: al w., 65-74 Male (Patient) Published: May 14

My symptoms were mainly morning nausea and a "dark feeling" I also noticed a very, very weak urine stream. As it turned out, my creatinine was a 9 (normal in 0.9-1.2 for a man my age) which meant that I was in kidney failure.

Comment from: 55-64 Male (Patient) Published: May 07

At 54, blood tests during an office visit relating to a severe flu revealed anemia. My internal physician was cautious and asked for follow-up tests over the next several months. When the numbers did not improve, I was referred to the hematologist, who proffered a preliminary diagnosis of myeloma and then confirmed it with bone marrow biopsy. I was stage II, with lambda light chains around 14000 mg/L. I had no prior symptoms, although friends subsequently noted that I had been sick often during the previous year. The oncologist observed that I was carrying the disease very well: looking more visibly ill might have accelerated diagnosis. It was fortunate that I sought treatment for the flu, or diagnosis might have been delayed until more serious damage had occurred. My first myeloma symptoms--acute bone pain in lower ribs--didn't occur until a month after the diagnosis.

Comment from: Bud, 65-74 Male (Patient) Published: November 09

My husband was diagnoised with stage 2 multiple myeloma two weeks ago. His protein level was 3,191 and should not be over 400. His creatine was 1.7, which is to high and that put him in stage 2. His hemaglobin is good. He had the biopsy and will be starting predisone and thalidomide. It was a real shock to us both.

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