Tag: California

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Myeloma Stories Patient

On being a Warrior and a Survivor

My journey began in 2001.  I was working as a registered nurse, coming off of 3 back to back 12 hour shifts. My 11 year old had an away soccer tournament, my sister was going with me to drive and see the games.  I felt extremely tired and felt like I was coming down with something.  I couldn’t hold anything on my stomach. I had projectile vomiting, spontaneous nose bleeds, chest pain, and pain down my arm and an ache in my jaw.  I thought I was having a cardiac episode or at least high blood pressure. It runs in our family history.

After the weekend I went to the ER where I worked.  I was really sick.  I also had lost 30 lbs. without trying and had pain in my ribs and tailbone area.  My doctor and I attributed it to the hysterectomy for uncontrolled bleeding 3 months prior.  I had blood drawn, urine test, and a chest X-Ray.  It showed 3 broken ribs, pneumonia and my blood counts were all out of whack. Including my electrolytes, and also, my kidneys were shutting down and I was dehydrated.

The doctor said I had a classic case of multiple myeloma but he had to wait for the results of a bone marrow biopsy.  Further X-rays showed lesions throughout my spine and a large one in the scrum (tailbone) area.  Sure enough the diagnosis was multiple myeloma Stage 3+. I was admitted and the next day the oncologist came in and told me I had 6 months to live.

I was a single mom with 5 kids, my youngest 7 years old, and I was devastated.

The doctors that I worked with, came to visit and told me that if they were my loved ones, they would transfer me to City Of Hope and later that day I was transferred. The cncologist at City of Hope examined me then sat down to talk.  He said, “I have examined you from head to toe and no where did I find an expiration date.”  He told me to fight hard and together we would see my children grow up.

I underwent heavy chemo. I was put on the first and only myeloma drug, Thalidomide, and radiation on the biggest lesions and a Auto Stem Cell Transplant (ASCT) a year later.  I finally reached remission in 2002 and have stayed in remission, now 16 years later.

I have had many bumps in the road:  14 pathological fractures (hip replacement twice, right femur, 3 ribs, right collar bone, 5 compression fractures and both feet, the 5th metatarsals). I had breast cancer in 2006, both breasts with a mastectomy then a recurrence of the breast cancer on the right chest wall with a lumpectomy and radiation in 2015.  I have had many removals of beta and squamous cell skin cancers since 2002.  But, what is most important is that I am a Warrior and Survivor and Never Ever gave up!

I got to see all 5 of my children grow into adults, get careers, get married and I now have 11 grandchildren to see grow up.  God has been good and by my side the whole way.  I believe in the power of prayer and have seen miracles In my line of work and believe I Am One.  If there has been a silver lining, it’s the incredible people I have met along this journey and the strength I never knew I had.  I Am Proud Of The Warrior I Have Become!

My One Bit Of Advice:  Go to a comprehensive cancer center that has specialists in multiple myeloma, that has access in the latest myeloma knowledge and treatments.  New Information, medications and treatment plans are changing quickly.  Over the time I have had multiple myeloma I have seen many changes, so you want to have your doctor to have the latest Information available.  Knowledge is Power!

– Marcia H.

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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

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Myeloma Stories

Monica V. – Riverside, CA

Four years ago while ballroom dancing my knee gave out and I went down. An MRI was done and lesions
were found around my knee. A bone marrow biopsy in my knee narrowed it down to Multiple Myeloma. I
did 3 rounds of chemotherapy then harvested my own stem cells and had a stem cell transplant. I
enjoyed 3 years of complete remission till I felt it coming back again. I’m currently on maintenance
chemotherapy and still dancing

– Monica

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Myeloma Stories

Delia M. – Running Springs, CA

For several months I had been experiencing a nagging back pain.  One month in to a three month trip, while hiking on Memorial weekend, my back went out and I ended up in the emergency room. I was prescribed pain pills and muscle relaxers. After 10 days the pain was no better and one morning I could not walk at all. My husband called the paramedics who took me to the hospital.

The emergency room doctor wanted to prescribe more meds and send me on my way, I insisted that I was not leaving till they did some tests, an MRI or Xrays. He grudgingly called to see if there was room for me that day to have an MRI. When the MRI results came back he apologized to me before admitting me to Oncology. For a few days several tests were done to confirm Multiple Myeloma.

The plan was to get the pain under control so I could return home and begin treatment. In June 2013 I was diagnosed, started treatment with Velcade, Revlamid and Dex. After 4 months I was in CR. I then had my stem cells harvested and stored in case I need them in the future. I am on a maintenance of Velcade every other week and Zometa once a month.

It is almost 2 years since my diagnosis and I feel good.

— Delia M.

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Myeloma Stories

Melinda C. – Salinas, CA

The summer of 2008, I began having steady back pain. I assumed I had hurt something when splitting wood for the season at our cabin. I went to the doctor, and got blown off for a while, being treated like “Yeah, yeah, back pain”.

I got a referral to a well-known neurosurgeon in town, got a MRI of my back in October, and was told that I had a couple of herniated discs. He put me in physical therapy for a few weeks, I got a shot in my spine and when none of these therapies worked, he began talking surgery. All this time I keep refusing the pain pills, but by early December am in pain 24 hrs a day, can’t sit for more than a few minutes at a time, and have lost 25 lbs without trying.

In early Feb. of 2009, my teacher friend at the elementary school where I am a librarian, told me to give her a copy of my MRI from October and she would send it to her radiologist brother in Montana. She told me that she was very concerned because I had stopped laughing. A couple of weeks later, on a Thursday, my friend came into the library and told me her brother had just called her and that in her 30 years of teaching her brother never called her at school. She proceeded to tell me that if the other doctors had looked farther than the herniated discs, they would have found a large mass at the base of my spine and many lesions in my rib-cage and spine. He had her tell me to get to the doctor that day and get a full lab, CT scan and X-rays, that I had cancer.

I immediately called the neurosurgeon, and they said I couldn’t see him until next week because he was out of the office. I explained the situation and asked if I could see another doctor in the office and again was told I’d have to wait until next week. Terrified, I called my OB/GYN and he got me in the next morning and ordered all of the tests and gave me the name of my oncologist, saying if his wife were in the same position, this is who she would see.

So at 41 years old, three children and a husband I found out I had last stage multiple myeloma. I was sent to radiation, started chemo and by the summer was preparing to have a stem cell transplant. The day after Thanksgiving in 2009, I received my cleaned up cells back at Stanford. Recovery was fairly quick for me and I was home with my family by December 18th. I went into temporary remission, but the cancer became active within 8 months. Bummer.

I began taking Revlimid, and that did a good job until we found a mass (plasma cytoma) growing out the top of my femur into my hip in August of 2013. I thought the pain I had been feeling for a few months was again something I’d done working out. I tend to poo-poo pain. Back into radiation I went, and began Velcade. Well, in early Feb 2014 my leg started swelling and I had a big bump coming out my eye socket pushing on my eye causing double vision when I read. This causes problems for a Librarian and I began closing one eye to read to the students. Come to find out, I have a large mass growing out of my spine and pressing on my hip, keeping lymphatic fluid from cycling out of my leg. and one growing in my skull. It is now March 28th, my leg is huge and I had to request a leave of absence from my school. I will be starting a clinical trial in April and am looking forward to stopping this cancer again.

I don’t like to give cancer much power over my life and will be going to school before Easter break to hand out the RIF books I picked up before stopping work. I’m only 46, and I am going to be here to watch my three kids grow up and continue teaching students to learn to love reading. Please keep the research going!

 — Melinda C. 

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Myeloma Stories

Ed W. – Manhattan Beach, CA

I was diagnosed in July 2006. Initially treated with Velcade/Dex. Went into remission for 4+ years. Relapsed December 2010. Had auto stem cell transplant in February 2012. It went well and I’m in remission now on a regimen of Revlimid and Prednisone. I feel like one of the lucky ones whose myeloma is very responsive to treatment and I’m very optimistic about my prospects for surviving the disease.

My full story can be found here: http://ewmyeloma.blogspot.com/

 — Ed W.

Categories
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

Categories
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

Art T. – Palo Alto, CA

Came down with pneumonia the 6th time in 5 years in August 2002. The Doctor felt some thing was wrong, did tests & told me I had myeloma & 1-3 years to live.

I returned home to AZ and Mayo confirmed it, put me on “chemo”. The first week nearly killed me, causing a 5 heart by-pass & insulin diabetes. I refused to continue chemo.

After 3 months the doctor was shocked to see my numbers getting BETTER and asked what I was doing different. I told him, 1-I would sit in my chair & say “get the hell out of my body”, 2-started to eat a fistful of pistachio nuts each morning, 3-while never a drinker, started to drink a :rusty-nail each afternoon, sipping it for an hour.

My Doctor told me not to stop & my numbers got BETTER at each future visit. I moved to Palo Alto CA a year ago & started to see a myeloma Doctor at Stanford. She was shocked at my records and my tests and asked what I was doing different. I told her the above. She also said don’t stop and asked me for blood for research. I gave 9 vials and will see her in April and hope to find her results.

— Art T. 

Categories
Myeloma Stories

Lilliana S. – Huntington Beach, CA

My journey began in September 2011. I was in great shape for a 55 year young female. I started having pain in my right shoulder, thinking it was probably a muscle I pulled while playing golf. I went to see an Orthopedic doctor. He took X-rays and couldn’t find anything so I asked him if he could give me a cortisone shot as I was about to take a trip to Europe the following week. My shoulder felt better and I was able to go on my normal routine until the following month when I started having problems with both my wrists.

I went back to my Ortho and he referred me to a neurosurgeon who told me I had carpal tunnel. I was in so much pain that I had surgery on both wrists two months apart. After surgery it was better but not normal so I went to physical therapy. By that time I started having swallowing issues and it was getting worse everyday, you see not only did I have multiple myeloma but I had amyloidosis which is a byproduct of MM.

A month later in the middle of March 2012 my right leg swelled and I had difficulty walking so my good friend who is a nurse told me to go to the ER. They told me I had a bakers cyst and that it would get better in time. In the meantime, I went to my gastroenterologist about my swallowing. He ordered an endoscopy. He found evidence of amyloid but didn’t bother to call me. I went back to my Ortho, he said he couldn’t help me and there might be something systemic wrong with me and gave me the name of an internist (which I didn’t have, big mistake!).

As soon as I got home I called but the next opening was in three months for new patients. At this point I was so sick I was tired, both legs were swollen and my swallowing was getting worse.

My husband who works for the city got me in to their doctor. He ran tests and found high calcium levels, proteins in my kidneys, etc. They had me check in on my birthday in the ER and that is when the oncologist came in and said you have CANCER MM. What is that, never heard of it. My husband and I were shocked, me how can that be. I don’t fit the profile.

They told me to get my affairs in order that I was not going to make it so I essentially gave up too but my kids, family and friends were not giving up. I was on dialysis and I had a feeding tube. They finally gave me Velcade and I responded immediately my numbers dropped dramatically and my kidneys started getting better…on my way to recovery.

Six months out of the hospital my feeding tube came out and my numbers were still declining. I’m seeing the best oncologist who specializes in MM and Amyloidosis. I am now in stringent complete remission without a stem cell. I still go once a week for Velcade and dexamethasone and no signs of bone lesions.

It’s been two years and my future looks promising. There are so many treatments out there and more on the way and having this website gives me hope, I don’t worry as much as I did in the beginning. I know this sounds odd, but I do feel blessed:) Hang in there my fellow patients.

— Lilliana S.