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Myeloma Stories Patient

When one becomes the patient

Much to everyone’s surprise, age 58 brought a diagnosis of Multiple Myeloma. It is an incurable blood cancer, with no clear and accepted treatment path and a limited life expectancy.

When one is no longer the medical provider and becomes the patient, they enter a community shared only by others faced with similar dilemmas and choices.

Judith have written and perform a solo piece entitled “Welcome to the Cancer Cafe – One Woman’s Extraordinary Journey”as an educational tool with the hope of sharing her perspective of what this role reversal has taught her.

— Judith

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Myeloma Stories Patient

Find the best physician

I was diagnosed with multiple myeloma on August 31, 2010 at 34 years old after suffering 2 unexplained rib fractures. I was blessed to see a physician who was familiar with myeloma and it’s symptoms and quickly tested me for it. I was referred to an oncologist and started treatment immediately. Since then, I’ve had two stem cell transplants combined with various medication therapies.  I had great results from the first transplant.

I had five years with no signs of myeloma and even went 18 months without any maintenance medicine. In August 2015, my myeloma returned with new bone lesions and an increased M spike.

I started a clinical trial at UAB hospital where my primary oncologist is and began to prepare for my second stem cell transplant. This transplant was less effective than my first and saw an increased M spike within 2 months.

In July of 2016, I developed a large plasmacytoma that required radiation. Because of the progression, I was no longer able to participate in the trial through UAB.

My physician felt that daratumumab and revlamid was the best next step for me.  With this therapy, my M spike went back down to zero and my myeloma progression has stopped. It has been a year and a half that I have been on this current maintenance regimen and I am currently showing no evidence of myeloma.

My advice to others out there with this disease is to have a good support group that consists of  family and/or friends and find a physician that treats your whole family and is willing to fight for you. Find a physician that you trust wholeheartedly because myeloma is a lifetime disease. Don’t be afraid to switch physicians if you do not feel you are getting the best care. 

— Tyler R.

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Myeloma Stories Patient

Helping to Fund A Cure

I was diagnosed in 2007 with Multiple Myeloma, and after chemotherapy as well as two stem cell transplants, I decided that I needed to do more for the Myeloma population.  I helped to create the Annual Miracles for Myeloma 5K race/walk in New Jersey to help raise funds for the IMF in  pursuit of research, and most importantly, to help raise awareness for this disease!

I felt that through this 5K, Myeloma patients would find some comfort and inspiration on the day of the race due to the camaraderie it brings to all patients and their families that are dealing with this terrible disease.

— Sheree P.
New Jersey, USA

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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 Patient

Two generations of MM patients

I was diagnosed with MM on February 3rd 2016. I stared RVD in March and had my stem cell transplant in July 2017.

I am living a normal life and doing pretty good.

I am 56 African American woman. My mom passed away from MM 2006. I was told it is not genetic but apparently it was for me.

I am now going for a kidney biopsy because I still have high protein levels in urine. My MM is light chains.

Novlette G.
patient

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Myeloma Stories Patient

A difficult journey

After having a general blood test in 1998, my internist told me to see a hematologist because my protein level was very high.  The hematologist did a bone marrow test and I was diagnosed with MGUS.  I was checked twice a year and in 2012 MGUS became multiple myeloma.

After so many years I thought I was home free but not so.

I was a candidate for a stem cell transplant and I did have one in 2012. My team is affiliated with the John Theurer Cancer Center in NJ.  They are wonderful.  The transplant gave me almost 2 years of remission but then the disease progressed.

I’ve been on several different treatments over the years.  Treatments work for a while but then the disease prevails.  The side effects of all medications are difficult.

This is an insidious disease.  I wish everyone good luck in what people like to call a “journey”.  Some journey.

— Marcia N.

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Myeloma Stories Patient

A Lot To Be Optimistic About

At 34 years old I was living a pretty incredible life. My wife and I had welcomed our second daughter in March of 2015. We were in the final months of construction on our new house and looking forward to soon calling it home. Yet something wasn’t quite right.

For close to a year I had been experiencing back and rib pain that kept me from enjoying everyday moments with our family. I attributed it to being an active father who was simply starting to show some age. But eventually I made the decision to get it checked out.

Following a series of scans, labs, and checkups we observed a lab result that was alarming, an incredibly high Kappa light chain number.

Shortly after, in October 2015, a bone marrow biopsy confirmed the diagnosis of Multiple Myeloma.

Our perfect little world was shaken to the core.

The compression fractures in my vertebrae led to almost unbearable pain. Fortunately, I was in front of a specialist within days and in a palliative care program that focused on returning me to a quality of life where I could once again thrive as a husband and father.

Approximately 20 weeks of chemo followed and an autologous stem cell transplant was performed in March of 2016. One year later life is good, but as anyone who knows this disease knows it’s far from “normal”.

We have a lot to be optimistic about given the progress being made in research around Myeloma. And for now we embrace each day with a unique perspective on life.

— Kent O., Hattiesburg, MS, USA

 

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Myeloma Stories Patient

Tale of Two Cancers

When I was first diagnosed w/ Smoldering Myeloma, my oncologist told me that because I was so incredibly healthy and, along with my extremely positive disposition, I would probably die of old age, before dying from Myeloma.

So since I didn’t expect it to have any real effect on my life, I didn’t even look up information about it. In fact, I remember thinking “Smoldering” Myeloma sounded sorta sexy.  Until the fanning of the embers ignited the smoldering into flames of Multiple Myeloma and when my oncologist started talking about the need for a bone marrow transplant—sexiness became an afterthought, because now I was a full blown cancer patient and cancer patient and sexy are about as incongruent as you can get.

In fact, the mere mention of cancer only conjures up fear, because it carries a power like no other disease—it crosses all human boundaries—no one has an exemption—no matter how rich or how good looking or athletic—anyone can be diagnosed with it and sometimes be diagnosed more than once. I know, because Multiple Myeloma is not my first roller coaster ride. However, my first experience didn’t prepare me for this cancer incarnation.

Myeloma is a cancer that no one seems to even have heard of and I go through treatment that has me taking different medicines that have played havoc with my system—in the form of a never-ending flood of diarrhea. I have to sit in a room with other cancer patients, wait for the nurse to poke around to find a usable vein, so I can be hooked up to an IV, spending up to 3 hours getting infusions.

And now I’m doing all the prep, in order to undergo a bone marrow transplant and then possibly more medicine in the post bone marrow transplant maintenance. After which I could go on maintenance program with more of the above treatment. And heaven forbid I may have to have another transplant.

Now this is definitely having cancer, no matter that hardly anyone has ever heard of it.

Now let’s rewind to my first run-in with the cancer I was diagnosed with, lung cancer.  I had never smoked, but I had spent many years doing stand-up comedy, performing in smoky venues—a victim of second-hand smoke.

They removed the lower right lobe of my lung and all the surrounding lymph nodes–no other treatment–no chemo, no medicine-nothing like I’m going through now.

A lot of people get lung cancer from smoking, but my situation really got people’s attention. It was the shock of hearing my story of being an extremely healthy multi-sport athlete—-including being a ranked distance runner, no less; an award-winning comedian, who had performed all over the world—much of the time in smoke-filled venues; never having smoked, but getting lung cancer from secondhand smoke.

Having been a lifelong advocate for issues that could lead to the betterment of our society, often using my ability to make people laugh to successfully get my message across, I started speaking out for the right to clean air, fighting the tobacco companies, patient empowerment, cancer awareness, the need for increased cancer research funding and the using the power of humor to connect with people on all these issues and concerns. I spoke all over the country doing Grand Rounds at prestigious medical hospitals. I spoke at medical schools, colleges and universities. I did keynote speeches at medical, cancer, pharmaceutical and tobacco prevention conferences. I taped PSAs that won the highest awards. I taped interviews that ran on the CDC website. I lobbied on Capitol Hill and met with prominent Senators and Congressional members. I spoke at state & local political conferences. I did literally hundreds of town hall meetings to get smoke-free laws passed. I ran workshops and weekend retreats. And I did literally thousands of TV, radio, news interviews. I was everywhere–on a practically nonstop, non-yielding mission to save and enhance people’s lives.

My having lung cancer turned into a heroic, noble cause that became an integral part of a world-wide advocacy endeavor with me using my ability to use humor to get people to pay attention and absorb the life-altering aspects to what had happen to me–reaching out & inspiring people all over the world to take action for themselves and the world around them. This time, with having Myeloma, it’s nothing like that.

I’m living with cancer, not fighting to prevent people from dying of cancer. This go-round, it feels like I’m a cancer patient, with the unknown of a bone marrow transplant looming in the near future. However, when I was diagnosed with lung cancer, I believed that God always has a plan and now with this go-round–it must be phase II of his plan.

Because, I still have all my requisite skills to make people aware of the numerous aspects one has to deal with when diagnosed and living with cancer. And when people ask me if I am as funny with having myeloma, I tell them, there’s nothing about life—good or bad that I can’t apply humor to and if my Myeloma can no longer be sexy, it can at least be funny.

Mirth + Merriment + Myeloma = a successful formula for using humor to increase people’s awareness about this cancer and research funding. Myeloma is the least known of the blood cancers; it’s like being the red-headed step-child, wearing out of style clothes and talking with a lisp.

However, having been a Black person, all my life, “Myeloma” sounds like the name of a girl that I went to high school with. Sure, she had an older brother Leukemia and older sister Lymphoma, but Myeloma was the popular one.

This time around I have years of experience of successfully making people aware of the challenges of facing cancer and how to get the powers that be to understand the need for research funding. I don’t think it’s a coincident that the two experiences that are universal are cancer and laughter. Not everyone likes the same music or food or sports teams, but cancer and laughter have the power to profoundly affect the lives of any and all people.

Be Blessed—Stay Blessed!

René H. Vallejo, CA, USA

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Myeloma Stories Patient

My faith helped me through

I was diagnosed with multiple myeloma the week of Thanksgiving 2015. Stage 2. The doctors say no cure. Lol I’ve heard those words before.

For those who know my story, and have witnessed the move of God in my life, knew that God would show me Mercy and Favor.

I lost my best friend to suicide? God was there.

In 2000 I was diagnosed with an eye disease,  doctor said there was no cure. Declared legally blind for years, then lost my sight completely for an entire year.  God was there. I had cornea transplants in both eyes? I am able to see today because God was there.

I lost my spouse in 2004 after being married for only 1 month? God was there. I remembered being asked by a coworker at that time, how can I love a God like that? My answer was, how can I not love a God like that? No matter what we go through, God is there.

Multiple Myeloma

When I was diagnosed with multiple myeloma I immediately felt lost. Different from anything else that I had experienced. Then I remembered reading a quote. Cancer is a word not a sentence. Then it was time to fight, and my thoughts were when God get ready to move this mountain he will. All I’m asking is that he give me the strength to climb.

Chemo, radiation, side effects, pain, fatigue, sleepless nights. Physically exhausted yet spiritually strong.

I made a decision to have bone marrow transplant in August 2016.  I also participated in a clinical trial which was done the day after transplant. It was explained that you are randomly selected for the trial. And yes I was selected, I call it God’s favor.

This was a very difficult time. Going through that gave a new meaning to the word sick. I had so many blood transfusion that I lost count. Since the transplant and the trial, I am so much better. I’m 6 months out and now on maintenance. I take Revlimid 5mg. Start my immunizations next week. I’ve had 3 biopsys since the transplant, and consults have all been positive, where there were no signs of myeloma. I still get very tired after 2-3 hours. But everyday that I survive is a blessing and a victory. So if you ever feel that you’ve come to the end of your rope. Remember tie a knot and hang on because God is there.

-Cynthia

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Myeloma Stories Patient

Be your own advocate

My myeloma was actually caught accidentally when I had a routine urine test because my life insurance was up for renewal.

The result was protein in my urine and they wouldn’t renew my insurance policy until I had a urologist sign off on it. This started a process and journey for me. This lead to a diagnosis of kidney cancer. My kidney was removed due to the cancer and then I almost bleed out (required 9 units of blood). At the time we didn’t know the reason why only that there was a problem. Fast forward 4 years and many, many tests and blood work they have determined that I have Multiple Myeloma.

I have come to learn a lot more about blood than I ever did. The lessons I have learned from this are if you see anything unusual on your labs from the doctor make sure you follow up as you are your best advocate and often the doctors don’t have time or don’t follow up.

In order to truly determine if its myeloma vs other blood cancers (which they thought I had for 4 years) is through a Bone Marrow Biopsy. While a bone marrow biopsy is not the most pleasant experience in the world it definitely isn’t the worst. I think there could be much better communication to explain things as I honestly had no idea what to expect with my first bone marrow biopsy and all the doctors were telling me how painful they are. I went from no bone marrow biopsy (probably due to fear which was unfounded) to having 2 bone marrow biopsy’s done in 10 days.

I am now in the process of learning and educating myself about Myeloma. I’m currently on wait and watch and hope that I will be able to stay at this stage for the rest of my life. There is definitely life after a Myeloma or other cancer diagnosis and having a good positive attitude along with reaching out and helping others is extremely important to your mental well being and I venture to say your progress.

— Rose C.