Category: Myeloma Stories

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Myeloma Stories

Bob S. – Winnipeg, Canada

Back in Februar 2012 , I was planning a golf vacation in Florida,but was suffering with a sore back. After visiting a hospital 2 mos. earlier(where they told me it was soft tissue damage), the pain persisted & I went to a sports medical center where they did blood tests & diagnosed the multiple myeloma.

Needless to say, I missed my vacation & spent two short 4/5 days in the hospital (my kidneys were impaired due to the disease) & then started 9 mos. of chemo. My Doctor suggested I might be a candidate for a stem cell transplant & we began treatments to aid in stem cell production. On Dec 24th,after another big blast of chemo, my stem cells were reintroduced.  The pain to my mouth & throat was almost unbearable but the nursing staff kept reassuring me that it would get better…tough to be positive when you have lost your hair, your appetite but I had an amazing support group who helped me through it.

Throughout this whole journey , I was amazed at the all the staff @ The Winnipeg Cancer Clinic. They are a different breed in the way they cared for their patients.  Caring, confident, courteous,& inclusive in their discussions right from the front desk through to the doctors.  You are made to feel important & I can’t say thank you enough for their care & compassion.

Last summer they took me off all meds.( hated the fact I couldn’t sleep after taking steroids).  I started golfing again & basically in remission for past 16 mos.  The only things that are lingering are slight numbness in extremities, low platelets & low hemoglobin which makes me constantly tired.  

Hopefully new myeloma drugs will be brought on stream which will aid in keeping this disease at bay.  Until then I will continue to treat each day with respect & a smile.  A special thank you to my wife who has been a rock for me even though I know how hard it was on her.

— Bob

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Myeloma Stories

Michelle – San Diego, CA

My name is Michelle and I was diagnosed with Multiple Myeloma in 2010. I had always been an active person who maintained a healthy lifestyle through exercise and a good diet.

When the back pain started in 2009 I was told by my Primary Physician it most likely was a strain and sent to PT.  In 2010, while on a RV trip with my husband Dan in Oregon I again had unbelievable back pain. During a hike noticed tingling down my leg and I was unable to lift my left leg. I ended up in the ER in Bend, Oregon, and a MRI confirmed I had a collapsed vertebrae and a small bone fragment was pushing on my spinal cord. The collapsed vertebrae at the T12 which was caused by a plasmacytoma (a malignant plasma cell tumor).

After two surgeries and a 10 day hospital stay I departed Bend Oregon with a brace on for my back and the diagnosis of Multiple Myeloma, CANCER. How could I have cancer? One month prior I had ridden my bicycle 100 miles around Crater Lake. I was a healthy person, cancer! I climbed Mt. Kilimanjaro, Mt. Whitney, Mt. Elbert and others, mountains all above 14,000 feet. I had ridden my bike up Mt. Evans, over 14,000 ft. in a race. Physical activity was part of my lifestyle. How could I have cancer?

In 2012 I entered treatment. I spent the summer months in treatment all the while remaining as active as possible. Riding, swimming and hiking. I had a Stem Cell Transplant in September 2012 and achieved complete remission.

I spent 6 months on Revlimed maintenance but discontinued use as I was having problems with a high Eosinophill count and constant low WBC.

I ride my bicycle, hike, yoga, swim and love the outdoors. This summer we’re off to Colorado to climb some awesome peaks and ride our bicycles to high places. I will not let cancer win and will continue to look forward, not back. My motto is “Never put off till tomorrow what you can do today”

— Michelle

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Myeloma Stories

Alf L. – Vancouver, WA

I am a 70 year old white male. In 2008, I had a BMT for multiple myleoma. Today, I am in remission and not on any maintenance drugs. I am working part time and snow ski weekly and play tennis and do light weights 3 times weekly. I am grateful to my Oncologist at Kaiser and other medical team supporting me in this. Shortly after the BMT, I did have several frustrating side effects, such as psoriasis, ear infection, shingles, and bell’s palsy, etc. Fortunately, these were treated and eliminated. My best wishes are extended to all MM patients and their families.

— Alf 

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Myeloma Stories

Karen F. – Olathe, KS

I was diagnosed in May 2013, by a routine blood test run by my primary care physician. She immediately referred me to a hematologist/oncologist. That is when the world started to spin.

My primary care physician thought I had Monoclonal Gammopathy, but after visiting with the oncologist he did not feel that was the case. He immediately ordered a bone marrow biopsy, which confirmed diagnosis. I also have liver problems, no symptoms, all revealed on blood testing. A liver biopsy was ordered, which revealed I have 40{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5} Multiple Myeloma involvement.

The oncologist referred me to Mayo Clinic in Rochester MN.. Mayo Clinic was very responsive and got me in immediately. They confirmed the diagnosis of Multiple Myeloma with liver involvement. They gave their recommendations and we returned to Olathe, KS.

I did not to go through treatments away from home when the treatments were going to be the same. We were also referred to Kansas Medical Center Bone Marrow Transplant unit in July of 2013. They confirmed that I was a candidate for a Stem Cell Transplant, but I needed to get the Myeloma under control. We started chemotherapy in July 2013, the first regimen recommended by Mayo Clinic did not get the Myeloma under control.

So in September 2013 I was referred to a Myeloma Specialist at Kansas Medical Center, she recommended that the chemo be changed to Rev-Vel-Dex.  We did 2 regimens of Rev-Vel-Dex and the Transplant team did not want another round of chemo done so December 2013 I went through a Stem Cell Transplant. I am not at my 100th day, so we do not know if the transplant was successful. I know that I felt I was in good health prior to transplant and the transplant really knocked me on my rear. I feel pretty good most of the time, I do not have the stamina that I did before the transplant.

I am in my mid 50’s and still have a job at this point, but that is questionable unless I can get back to work soon. I had no symptoms prior to all of this, I still have no symptoms.

There is talk of another transplant right away, and I do not want to do that, I don’t feel I am in as good a health as I was in December. Luckily, my Oncologist is not a fan of back to back transplants either. She is talking maintenance therapy and see how it goes, but we have to wait for the bone marrow biopsy, in April to see if the first transplant was successful. 

— Karen F.

 

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Myeloma Stories

Susan M. – Columbia, SC

I was way too young to be diagnosed with an “older man’s cancer.” At 42, I was generally healthy and active, but I had been experiencing back pain on and off for many years. Always thinking it was muscular, I ignored it and took muscle relaxers. When it got so bad I couldn’t move after an 11-hour trip to my brother’s wedding in December 2007, my sister, who is a radiologist, ordered me to get an MRI, which revealed tumors throughout my spine. Subsequent x-rays and scans revealed tumors pretty much everywhere.

I had vertebral kyphoplasty #1 in February 2008 to attempt to repair the first broken vertebra, then kypho #2 a couple weeks later to repair the one I broke not long after the first surgery. Two rounds of a cocktail of Velcade, Thalidomide, and Dex got me to a complete response. Since then, I have been on Revlimid for maintenance.

I lost my father at the age of 45 to leukemia. We were unknowingly exposed to radiation in Colorado when I was a little girl. My father died 30 years ago without the aid of a bone marrow registry or the drugs that have come from incredible research in blood cancers in the last several years.

I am truly grateful for organizations like IMF, who are there for the patients, provide any and all help they can, and are a critical presence in educating us about cutting edge research in multiple myeloma.

— Susan M. 

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Myeloma Stories

Carole L. – Dubois, PA

I look at my story as more of a journey because it was in 1987 that Multiple Myeloma came into my life. It is hard for to believe that 27 years ago MM became a way of life for me, but the key word in this sentence is life. What I want to pass on to those beginning their journey is that you are very lucky as you have so many options, and you can fight using these options. I have been able to see science move forward with new drugs, research, transplants, and education of MM.

I was blessed to be given these 27 years, and to see the progress being made. Thanks to 3 transplants, help from the new drugs, and brilliant Doctors I am able to continue to live my life without any regret. May God allow you the same.

— Carole L.

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Myeloma Stories

Claudia T. – Gaithersburg, MD

I was diagnosed in May of 2005. I’ve been a visiting patient at the University of Arkansas since diagnosed.

In the first year I was given two rounds of VDT/PACE, collected my stem cells and then transplanted in September and December 2005.

Following the second transplant I was hospitalized with a respiratory illness and released right before Christmas. I was to have two more rounds(Consolidation) in 2006 but only had one more due to a hospitalization at home for diverticulitis.

I remained in remission for nearly three years when it returned as a plasmacytoma in my right tibia. I received radiation and chemo therapy for two weeks. As the bone was compromised I had surgery at home when the tibia broke. There were two surgeries to place metal in the leg, first one failed after physical therapy the metal broke because the bone had not healed. The second surgery put in more metal and screws but the leg became infected and I lost it above the knee. I was on many combinations of Revlimid, Cytoxan, Dexamethasone, then Pomalyst for one year and a half doing well then had a return in my collar bone and sternum.

I was on a 16 day metronomic treatment with a response but it returned in August of 2013. At that time I was put on Vidazia, and PAC-MED. My stem cells were transplanted as a boost.

In November my PET scan showed a return in the clavicle and sternum at which time a fine needle aspirate was done of one of the lesions in the clavicle.

I am currently on no drugs awaiting approval from my insurance company to start on Mekinist which is a drug used for Melanoma and which my cellular make-up has been tested and shown to be compatible to at least try this approach. In the meantime my Lambda light chain number is increasing and there is tenderness at the clavicular head where the myeloma is located.

— Claudia T. 

 

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Myeloma Stories

Joan G. – Las Vegas, NV

In 1992, at the age of forty, I developed a very bad backache. It started on my L5 bone, the lower right side. I went from doctor to doctor without any success. I was told that I had muscle strain and to take tylenol.  

It lasted about 5 or 6 months until finally April 30 1992 I collapsed in my bedroom. I was taken to the hospital and my orthopedic doctor who had misdiagnosed me all those months decided it was time to do an MRI.

Two days later it was discovered I had a plasma cytoma on my L5 bone that had exploded. The doctors decided to give me prednisone , dexamethasone and 30 days of radiation.

I was told that after five years of followup, if all went well, I would be in remission and not to worry anymore.

Almost ten years to the day my back pain returned and I was checked into the hospital again . I was having trouble breathing. After a series of tests it was determined I had full blown multiple myeloma that had spread everywhere.

My doctor informed me that is was imperative that I have a stem cell transplant. I was being taken care of at the Cornell Weill hospital in New York City. After a few months of pill treatment I was set up to have my stem cells taken out in December 2002.

I had to be in the hospital for five weeks. On January 6 2003 I was given the transplant of my own sweet stem cells. I remember asking the doctor how do they know where to go? He just said they know where to go.

It is now eleven years that I am in remission. I was blessed that the transplant worked and I have been relatively healthy ever since. I do have some back pain and it is very tolerable. I was blessed with a great team of doctors. I know that at some point there may be some more symptoms again and from what I understand there are so many more ways to treat the disease…..it is much more promising.

I am a two time survivor. So do not despair….just have the attitude that you will beat this…I am a testament to this.  God bless all of you and good luck to all.

— Joan G.

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Myeloma Stories

Andy S. – Newport Beach, CA

Because of my good fortune and health I have tried, for the last 4 years to give back to the MM community. I have done it by raising awareness of our disease to as many people as possible as I have bicycled along the east, west and gulf coasts.

In my journey every year during awareness month I have stopped at many support group meetings and have been inspired by so many people.

I was diagnosed Stage III in 2008 but was getting sick in 2007. I just did not have time to be sick or so I thought.

In the end in had all my treatments in Vienna, Austria and since 2009 I have no need for treatment. I have blood work every three to four months until my numbers begin to move.

In the meantime as long as I am healthy I will continue to ride along to support group meetings and help raise awareness.

My only goal right now is to stay healthy and happy and I seem to be very under control that way. When my MM goes active I know that there is much new ammunition in the medical/ research end of MM. I will hope that it can be held at bay until there is a cure. I want for all of us patients and caregivers a better quality of life as we fight this disease.

http://www.crazyguyonabike.com/volcandy

http://www.crazyguyonabike.com/doc/mytouringrootsadventure

You can donate here  https://online.myeloma.org/netcommunity/MemberFundraiserBicycleMojave 

— Andy S.

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Myeloma Stories

Ramona K. – Perham, MN

In the spring of 2008 I experienced fatigue, and I got itchy hives all over my body. I was using a heating pad for extreme back ache all summer long. I saw several doctors and no one seemed to know what was going on – maybe arthritis, maybe too much lifting…

Then I was hospitalized for nine days after feeling a very sharp pain in my back and then falling on my butt because of it. By then I had four compression fractures of vertebrae, but still no diagnosis. Finally, as my vertebrae kept fracturing, I was referred to a specialist. I was told it would be four weeks before he could see me, but he graciously took me the next day, because he had seen the blood work that had been done when I had been hospitalized, and he knew right away what I was dealing with – MM.

My husband and I both thought I’d be dead within two months, but here I am almost six years later. What happened?

I was put on Revlimid and Dex and right away my numbers came down. My stem cells were harvested at Mayo, but since the meds are working, I’ve not had a transplant. My numbers are low, but I will perhaps never be in remission.

By the time I got on the meds, I had nine vertebrae with compression fractures, so I take a pain med every morning and evening. As the years have gone on I actually have more energy – now I can sew and bake and even mow the lawn and tend to my flower gardens.

My advice? I would encourage anyone out there to be more aggressive than I was about asking for blood work to be done. Family doctors evidently aren’t trained to diagnose MM, so go to a specialist as soon as possible. If I had done that, I wouldn’t be having the back pain now. And, I had used weed killer on our lawn and stained our house with a stain that is no longer on the market because it was so dangerous – all without adequate protection. So, stay away from chemicals like that.

God’s presence is so much with me through this all, and my family is so loving and so close. I have a lot to live for, but I have no fear of dying either. We all will, of one thing or another, and I am grateful for having lived a graced and beautiful life.

— Ramona K.