Tag: patient

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Myeloma Stories

Alistair M. – Leopold, Victoria, Australia

I lived my life as a very fit 48 yo male. Always swimming, paddling and participating with my partner in sport. I started to fracture my ribs somewhat benignly in 2012. I worked as a Paramedic and the shift-work seem to mask the fatigue very well. Things progressively got worse until after many questions I was diagnosed in September 2013 with Kappa Light-Chain MM.

The drugs and the treatment caused a number of problems weight gain, fatigue, depression, loss of libido. I attempted in my first year of remission to commence a full-time job and gave up after 6 months of repeated viral infections.

I’m 51 yo now and have been taken of all the nasty medications as I go into my second year of remission. I am losing weight, I have more energy, my libido is back and I starting work again. Best of all I’m participating and enjoying my time with my kids, partner and family. Patience and don’t be too hard on yourself, you will be OK.

– Alistair

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Myeloma Stories

Laura R. – Manistee, MI

I have recently been diagnosed with MM (December 2014) and am only beginning to learn about multiple myeloma and the treatment that goes with it.

I’m at the beginning, frightened, unsure stage and anxious to meet and talk to others who are like me. I’m 67 years old and retired. My diagnosis came from routine blood work ordered by my primary care physician for an upcoming yearly physical. Although, I had been feeling ill this past fall with a sinus infection and lingering nausea. My doctor and I thought the nausea was related to drainage from the sinus infection, and so I proceeded forward with the treatment for infection and intended to talk to him about how I hadn’t really regained an appetite and still felt tired and weak when the lab results came back. We actually repeated them because my doctor was sure that there was a fault in the testing itself. There wasn’t.

My kidneys were failing and I was put in the hospital for more tests and diagnosis. I started dialysis while in the hospital and have continued. My nephrologists have not yet decided whether they think my kidneys will return to function or not. In the meantime I have started treatment for myeloma using Velcade, Cyclophosphamide, and Dex. I have completed 3 rounds of treatment. The pain has worsened for me since December and I’m struggling with how to handle it. Tomorrow I am going to be seen by a pain management clinic and am hoping to find some answers that will help me.

I am thankful to have found this site, as the stories have helped me find some emotional respite. It helps so much to feel like you are not alone!

– Laura

Categories
Myeloma Stories

Robert Z. – Savoy, IL

I have spent over 30 years as a rheumatologist treating thousands of people with abnormally overact immune systems causing arthritis. Now ironically I have multiple myeloma, a malignant condition of the immune system, specifically plasma cells.

I have undergone autologous bone marrow transplantation and pre- and postoperative chemotherapy. For the time being I feel good and enjoying life until my myeloma relapses, if it does.

For planning purposes and family and friend relationships, it is really nice to have a crystal ball, even though murky, to plan for the future. In some ways, the condition has been a blessing.

– Robert

Categories
Myeloma Stories

Elfi J. – Vienna, Austria

In 1989 I wanted to know my cholesterol level. At that time I worked as a food journalist and our recipes were full of butter, cream, yolks – pure cholesterol. I told my boss that we should take into account the sedentary lifestyle nowadays and should reduce these ingredients. The outcome of the argument was that – not knowing my own cholesterol-level – I went to my doctor and had a blood sample taken. He included an electrophoresis in his laboratory description. This was how I found out that I was a potential MM patient.

14 years I more or less faithfully went in for the routine exams. In 2000 I was admitted to the hematological ward for treatment, but they considered my situation did not require immediate action right away and I went home again. In 2003 the values required therapy. I changed hospital during the first part of my treatment since I was not happy with the way I was addressed as a patient. I moved and have stayed with the institution where I was administered the standard treatment with a tandem autologous stem-cell transplant.

I never had any doubt I would reach a complete remission. This was the case for the consecutive 8 years. I was able to continue working as a food journalist, I became grandmother and finally retired. During these years I became more and more involved with Patient’s Advocacy and Patients’ Groups and finally became vice-president of the Austrian Multiple Myeloma Association founded by our memorable pioneer Elke Weichenberger.

In 2011 my treating physician, Dr. Heinz Ludwig, suggested a second round of chemotherapy. After 9 cycles I had again regained complete remission – which is my present situation. I had to step in as president of our Group in 2011 – which shows that the treatment had been successful. My motto is: I am healthy as a principle. And: I believe in the power of a smile and positive thinking.

– Elfi

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Myeloma Stories

Sara C. – Johns Creek, GA

In October of 2010, I was figure skating and as I entered a spin I felt extreme pain in my lower back. After over the counter drugs didn’t seem to help, I went to a doctor who x-rayed my back and proclaimed I had a lot of arthritis (due to many falls taken figure skating). He told me no more jumping or impact sports and recommended yoga. He also gave me prescription pain meds. I tried yoga and even sports massage, but the pain never got better, so I scheduled an appointment with an orthopedist. In late December, a few days before the orthopedist appointment, the pain was so severe I couldn’t get out of bed. My husband called an ambulance. It took 3 firefighters and 2 paramedics to put me on the stretcher to take me to the hospital.

After x-rays and a CT scan, the emergency room doctor told me the pain was caused by a collapsed L2 vertebrae and I had lesions on some of my other vertebrae which were all caused by a cancer called Multiple Myeloma. They admitted me to the hospital. Here’s what went through my mind: Cancer? At age 47? But, I’m in great physical shape, or was! Am I gonna die? Will life ever be normal again? Will I ever walk, skate, or even lead an active life again?

After 4 days in the hospital and numerous tests, multiple myeloma was confirmed, my pain was under control, I was fitted with a body brace and sent home. A few days later, January, 2011, my oncologist told me “we’ve got this” and eventually, I’d be fine. He did an MRI and skeletal survey and determined that, in addition to the lesions on my spine, I had lesions on my thigh, hip and arm bones. The collapsed vertebrae was repaired with a vertebroplasty. I was treated for 4 months with velcade, dexamethasone and revlimid and achieved a complete remission.

During that time, I began to do yoga and was able to do a little figure skating. Next, I had an autologous stem cell transplant which resulted in a stringent complete remission. After the transplant I had monthly infusions of Zometa for 2 years and took Revlimid for 3 years. Now, almost 4 years later, I am happy to say that I am still in stringent complete remission.

2 months after the transplant I returned to figure skating and, 6 months after the transplant, I returned to teaching figure skating classes. I can jump and spin again and still take some falls. I have passed 2 United States Figure Skating tests (one being the adult gold test- the highest adult level) and competed again last year, skating a 2 minute 40 second program.

My recovery has been remarkable and I am stronger and more active than ever. Every day I am thankful for modern medicine and the prayers and positive thoughts of my family and friends. My life is relatively normal – except for the annual testing at the transplant clinic and visits to the oncologist every few months. Also, I have met some truly exceptional people through mentoring myeloma patients.

– Sara

Categories
Myeloma Stories

Verne S. – Souris, Manitoba, Canada

I was diagnosed with myeloma eight years ago. No symptoms, just picked up in an annual medical mostly due to low hemoglobin (117) m band count was 44. started on dexamethasone alone, dropped to 20 but soon started to rise.  I was on track for an ASCT , was harvested but then upon testing found that I was 4;14 positive, so was not an ideal candidate for an ASCT.

I was fortune enough to be enrolled a clinical trial mostly using velcade quickly dropped down 0 myeloma count and was fortunate to remain there for over 48 months from the start of the clinical trial.  Slipped out remission over a year ago and now am on revlimid, dex and cyclophosamide.  Although initially disappointed that I did not reach a negative count, I am now at 4 for last few checks and will live with that.

I know that I will slip out of remission with revlimid but look forward to several drug combinations pomalidomide, carfilzomid, velcade sub q and any number of combinations with some of the new novel drugs. And I guess that I still have my stem cells stored so this could still be an option if deemed necessary.

I guess what I am trying to leave with this story is that when I was diagnosed the doctors said I only have 2-5 years. I am now working on nine years and feel that the future is even brighter than I have experienced over the last journey.

– Verne

Categories
Myeloma Stories

James M. – California, USA

I was diagnosed in June 2010. I began treatment with Velcade. I attended my first IMF conference in LA in August. I learned a tremendous amount about my disease there. My Oncologist was suggesting a stem cell transplant because my labs were not showing much improvement. I was fortunate enough in Oct. to have Dr Durie look at my data. He told me my myeloma was smoldering so the labs were stagnate. I went off all meds for 4 years and was just monitored. Last Feb I began a low dose Rev/Dex treatment. I also harvested my stem cells in Oct and stored them in case I need them.

I attended my second IMF seminar this year and held a MM Fundraiser. Things are moving rapidly in the MM community. My advice is to educate yourself on your condition and be part of your treatment. There is hope if you stay positive, eat healthy, exercise and be your own advocate.

– James

Categories
Myeloma Stories

Linda H. – Signal Mountain, TN

I’ve yet to meet a patient who’d heard of multiple myeloma before their diagnosis which is why increasing awareness among the public and general practitioners is so important.

In my case, I ignored my back pain thinking “everyone has back trouble”. As a result I am now over 5 inches shorter than before I had myeloma. I still suffer some back pain but exercise daily to strengthen my core to better support my back. In addition, I didn’t fit into any of the most common categories of patients: I was 46 years old, female and Caucasian. So no one is immune from myeloma and shouldn’t ignore any persistent health issues.

I encourage everyone to share the symptoms with as many as you can. I will be mailing letters to over 100 primary care physicians in my area and having March declared as Myeloma Awareness Month in my state and local area. A prompt diagnosis is very beneficial so help spread the word!

– Linda

Categories
Myeloma Stories

Carol M. – Dorset, UK

Hello, my name is Carol, I was diagnosed with MM 10 yrs ago at the age of 53.  My main symptoms were anemia, poor immune system and high protein levels, my bones fortunately were not affected. I was offered treatment immediately but decided to wait, firstly until my daughter left home for University and secondly to improve my health, because I was very rundown. I did this by becoming a almost vegetarian (I still eat fish ) and take therapeutic levels of vitamins. I eat my veggies raw, blended, not juiced, also NO sugar, alcohol and meat or processed food.

When my daughter left home 18 months later my blood results were improving so I decided to continue with my programme and my results continued to slowly improve.  About three years ago there was an increased improvement, and now my B2M levels have halved and my protein levels are down by nearly 75{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5}. My consultant is delighted and she thinks I should let people know what I am doing, so I have shared this with my support group and on-line forums. My programme is one that reduces inflammation and provides the nutrients the body needs to heal itself. It can be used when having conventional treatment, it does no harm, there is no quackery or un-evidenced methods used, it is simple and inexpensive.

I am lucky because my background is in biochemistry and pharmacology and so I was not afraid to take the path I chose. I hope that this message will prove helpful to others who are looking for ways to improve their condition, and I am happy to give further information on my programme and results.

Best wishes and good health,

Carol

Categories
Myeloma Stories

Jerry H. – Alexandria, MN

This past summer I noticed much more afternoon fatigue than normal. Upon encouragement by my wife, I saw my doctor who did a blood test and discovered elevated protrien. He referred me to local oncologist who performed a bone marrow extraction which showed MM.

I am in very early stage so they put me on a pill and steroid. My  system rejected it so I started again with Revlimid and  Dex. Just started so will see how it goes.

Moral of story even though I’m 67,  pay attention to changes in your system. Don’t always assume its an aging thing.

I thank my wife for encouraging me to see the doctor and an attentive one at that!!!

– Jerry