What Does Multiple Myeloma Feel Like? What are the Symptoms?

I came across Cindy’s MM Blog recently and really liked her story of how she was diagnosed with Multiple Myeloma, what she went though and and what her first few major steps into treatment were.

I pasted it below for your reading enjoyment and education:

I was always fairly active and was an on again, off again jogger. At 50 years old in October 2005, I was well on my way of getting back into shape. I was back in my Size 4 jeans and was jogging and working out with weights regularly at Sprint’s (my employer) gym on campus.

The morning of October 4, 2005, I jogged 3 miles in 33 minutes on the treadmill, plus worked out with weights. In retrospect, I did notice that I felt a little different that morning, weaker maybe, but still able to give a good workout. At 1:30am Wednesday morning, 10/5/05, I woke up with a terrible headache, very nauseous, and vomiting. I experienced a thirty minute episode of severe chills. I remember putting on fuzzy pajamas, a long gown, a robe, socks, and an extra blanket on the bed and I still could not get warm enough. Thank goodness the chills subsided. I called in sick Wednesday morning (10/5/05) telling my manager that I had a migraine.

I remained in bed and very sick the entire day, that night, and Thursday. Again, I called in sick Thursday. I was in the middle of an important project, but I was too sick to get too upset about it, though I recall helping my boss over the phone find my file on my computer. Little did I know this would be the last effort I’d ever do in regards to my job responsibilities at Sprint. I managed to get a glass of 7-up over ice and sipped on it throughout the day so that I wouldn’t dehydrate. My oldest sister, Doris, who lives in Colorado, called me that afternoon and she somehow noticed I sounded different. She warned me that my illness didn’t sound like my typical migraine. She encouraged me to contact my other sister and head to the hospital.

I contacted my Primary Care Physician’s (PCP) office and asked for a refill of my migraine pills. The doctor returned my call later Thursday afternoon. He asked whether I had a temperature. I hadn’t taken it yet. He said for me to come to his office the next day at 1:30pm unless I had a temperature. In that case, he instructed me to head to the hospital emergency room. Sure enough, I not only had about a 103 temperature, but I experienced another thirty minute episode of those strange chills. I called Joy, my sister who lives next to me, and asked her to bring me to the hospital. I must have been out-of-my-mind sick because I didn’t even get dressed. I went in my pajamas and robe!! I must not have been thinking.

They checked for viral meningitis. Yuck. They do this by inserting a needle in your back! Negative. Once they got my temperature down, they sent me home, only after they’d taken four vials of blood, two from each arm.

At 7:30AM the next morning the hospital called me and asked me to return to the hospital and check in for observation. They said my blood was full of bacteria in all four vials. That was Friday, October 7, 2005. I was there a week, discharged on the following Friday, October 14, 2005. During that week I had a multitude of tests. Due to the bacteria in my blood, an infectious disease doctor was one of the doctors put on my care team, I guess you’d call them. They were all trying to figure out what was wrong with me. It was a mystery for most of the week. I sensed some sort of power struggle or competition between the doctors and the infectious disease doctor.

Besides the bacteria in my blood and a temperature, I had several other symptoms. My right arm became immobile. My shoulder and elbow hurt very much and I could not move my arm at all. I held it near my body in that fetal-like position. Boy was it sore! My major organs were not working properly. My gall bladder was functioning at only 7% and they removed it on 10/12/07. My liver was swollen with fluid around it. My heart was functioning at 60%. They also noticed that my blood contained several abnormal white cells. This seems so obvious to me now, but before this time I had no idea that cancer cells are abnormal plasma or white cells. Dr. G. (infectious disease doctor) suspected Myeloma from the beginning. I think the other doctors wanted to prove him wrong. It was almost funny to watch the doctors work against each other. The main doctor on my case asked whether I had an alcohol problem. They had some other doctor checking my right arm out. They basically had me summarized as having arthritis in my right arm and I guess alcoholism for my liver. I don’t know how they were explaining my gall bladder and the white abnormal cells. Once they went through the required protocol I guess, Dr. G. ordered a bone marrow biopsy which he was able to schedule on Friday, 10/14/l05, just before I was discharged. We set up a follow-up appointment with him for 10/21/05, the following Friday. That was when he told me the results of the biopsy resulted in positive for Multiple Myeloma (MM) IGG (the most common strain). In the hospital, both Dr. G. and Dr. M. (the hematologist/oncologist) both explained they suspected Myeloma and that it was treatable but not curable. I still had no clue what I was up against.

During this time in the hospital, I had a phone interview with a Nextel manager. Prior to becoming ill I’d had an interview with a Director, his boss. This was just after the Sprint-Nextel merger. When I was discharged on 10/14/05, I was too ill yet and my right arm was so immobile that I stayed with my son, Adam, and his wife, Stefanie, for two weeks. The first week at his house I was informed that I received a promotion and Mike was my new boss. Unfortunately, I was never able to perform my new job, as I never returned to work as I thought I would.

By November 9, 2005 I started on treatment, which was Thalidomide and Dexamethasone (steroid). The Thal/Dex regimen did its job and it began to attack the cancer cells, but oh did the Thalidomide wear me out! I eventually had to cut down on the dosage because I could not handle it. Within the first month, I was able to move my arm out from my body, as the treatment killed off the plasmacytoma’s (tumors) in my right shoulder. Arthritis or a pulled muscle.ya right. Those other doctors were just plain silly.

In December 2005, just a few months after I was first diagnosed and just one month after I began treatment, my back was hurting like I’ve never experienced pain before. I could hardly move, let alone walk. One day I wasn’t sure I was going to be able to get out of bed. In short, X-rays did not show any problem with my back, but an MRI showed a lesion (tumor) in my Thoracic 8 vertebrate. I had 10 radiation treatments on my T8 and then had Kyphoplasty done due to the compression the tumor caused.

I had a stem cell transplant (SCT) April 4, 2006, but unfortunately it did not produce a remission as SCT’s generally do. It seems every other person I meet who has MM and a SCT get a remission! I’ve met only one lady whose SCT did just as mine: no remission. But, with MM, even a remission is short-lived. This beast MM always returns; the SCT just extends your time a few more years.

By August 2006 I was put on a newly approved drug, Revlimid, along with the dreaded Dexamethasone, and of course a few other medications for prevention or supplementation. I’ve been responding well to this regimen, though from 5/31/07 to 9/12/07 my IGG serum levels did increase by 300. I’ve never had my IGG serum increase like that, only after my SCT when I was not taking anything. I understand my MM is aggressive, so that is probably why my IGG level increased so much and so quickly. When I was first diagnosed, my IGG was 4,670. Just before my SCT in February 2006 it was 1200. In July 2006 it was back up to 3,055. In May 2007 it was 800, and in September 2007 it was 1100.

The type of steroids one takes for cancer break down large muscle mass, just the opposite of the type of steroids many athletes take. But these steroids also kill cancer cells and have some other benefits. My legs have become so weak since taking them for about two years now. Unfortunately, they have caused myopathy severely in my left leg. I can hardly use it most of the time. On 10/11/07 the doctors took me off of steroids due to the myopathy. I’m thrilled, though feeling lots more aches! These steroids also cause eye pressure which can cause glaucoma and blindness. My eye pressure is so high that my optometrist has put me on daily eye drops and 3-month check-ups. Perhaps I can get off of them now that I’m off of steroids.

In summary, that is my MM story from October 2005 to current day, October 2007

You can read Cindy’s other blogs here:

By the way, also check out our Multiple Myeloma Clinical Trials Search Tool

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5 thoughts on “What Does Multiple Myeloma Feel Like? What are the Symptoms?

  1. Oh my goodness! Thank you for your message & using “my story” here. I’m honored! I reread it and couldn’t believe how much has happened since then. Wow. I got off track these past few years on that blog and then neglected it. In the past few months I’ve come in contact with two other ladies going through diagnosis & treatment of MM. I even talked to one on the phone. Networking is good therapy. I’m getting inspired from these recent interactions, to get my act together & update my blog again. My intention for my blog was to help others with my story…as I have been helped by reading the blogs of other people. Thank you for using it. I hope my story helps.

    • Hello Cindy,

      Indeed your blog helps! One of the most popular MM searches is for symptoms and rather than reading a dry, bulleted list from Wikipedia or the Mayo Clinic, a personal story goes a long way and sheds light on nuances that those lists leave out.

      Thanks so much for sharing your story with the world and keep blogging. It makes a difference!

      – Kim

  2. i just noted that the link you have to “cindy’s other blogs’ is not right – can you please put the correct link

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