Tag: Myeloma Stories

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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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Family Member Myeloma Stories

When Food Becomes the Enemy

I still cringe when I think of how the very food that was once used to nourish our bodies is now one of the primary causes for the many diseases that attribute to so many deaths of someone’s mother, father, sister or brother, and even child. I lost both of my parents to multiple myeloma, my father twenty-two years ago and my mother just seven short months ago. The doctor who diagnosed my mother said that we would have stood a greater chance at winning the lottery than having both parents die of the same cancerous life ending disease. It’s just not common, he said. And yet, here we are. No doubt as a result of losing both my parents to such a horrific disease, it heightened my alert in terms of how I would be affected from a hereditary standpoint. Although I am fully aware of the fact that cancer cells lie dormant in everyone, I couldn’t help but wonder how significant of a role those cells would play in my overall genetic makeup due to my parents both having been victims of multiple myeloma.

It is still unknown as to how one comes to have multiple myeloma. Yet I understand that even though genetics make up a very small part of an individual contracting the disease, the manner in which we treat the disease is extremely detrimental in terms of living out a successful life expectancy. I knew nothing about multiple myeloma when it so viciously infected my father’s body. I knew only that it was a blood cancer that resulted in destruction of the bones. More importantly I knew that eventually, sooner than later, my dad would die from it.  Fast forward twenty-one years later, after my mother was diagnosed, I vowed that I would make a greater effort to educate myself about the very disease that somehow has infiltrated its way into my family heritage.

My mother’s diagnosis caught me and my siblings completely off guard. By the time she was diagnosed, myeloma had already ravaged her body and a vast majority of her blood was diseased by as much as 75{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5}. Unfortunately, because everything was happening so quickly, we didn’t really have time to completely process the reality of what was taking place. We simply had to act by putting matters in order.  As a family, we chose not to treat my mother with conventional medicine. She had suffered a brain aneurysm twelve years prior and was not a suitable candidate of the harsh side effects that she would most likely endure; thereby resulting in a much more degrading quality of life. And, the fact of the matter is we just were not willing to put her through that. So, we let nature run its course and my mother passed away as humanely possible as we could manage under the circumstances.

Although myeloma was not my mother’s only battle, it was the one of which would ultimately defeat her. And even though I knew that the odds were not in her favor, I couldn’t help wanting to take an approach that I thought would be a positive contributing factor to whatever time she had left with us. Like a huge majority, my mother grew up eating the same SAD (Standard American Diet) diet that many are traditionally prone to consuming. And yet it was by no means ever truly a diet that was conducive to overall good health, it was still not the SAD diet, in the days long ago, of which we have come to know as a lethal deadly force wreaking havoc in the lives of so many today.

Out of sheer desperation and a need to feel as though I was doing SOMETHING worthwhile, I made a last-ditch effort to implement some healthier food choices in my mother’s diet, but after being accustomed to eating in the same manner for 72 years and not really understanding the true value that comes with embracing a different way of eating for a better quality of life–coupled with the prognosis we had been given–there was very little to no impact made in my attempts. It was too little, too late. This way of eating simply did not appeal to my mother. Still, I am convinced that had we known in time, and taken necessary measures long before we did, my mother would still be with us—at least for now.

I, personally, have adopted a whole food plant-based diet consisting of vegetables, fruit, whole grains, legumes, nuts and seeds, in an all-out effort to change the course of my family genes, in addition to ensuring that I am eating for optimum health. I stand firmly rooted in the belief that the body really does have the ability to repair itself and that we must be ever so diligent when it comes to doing our part to assist it in doing its part.  I also believe that we as a society, on the whole, have been far too lackadaisical and have become extremely and outrageously dependent on the medical professionals when it comes to our approach in common sense heath practices. Yet, I tend to think that much of that has to do with a lack of education, more so than a willful in adherence in regards to eating for optimal health and wellness. It wasn’t easy giving up the foods I enjoyed for so many years of my life, but what made it a whole heck of a lot less challenging is considering the demise of which BOTH of my parents met in their life’s end and the sickening state of affairs concerning our food and agricultural issues.

As a result of eating WFPB (Whole food plant-based), I have noticed some significant changes. But one of the most important changes is the decrease of the level of inflammation I experience in my body, overall.  Since cancer is characterized by chronic inflammation in the body, certainly this can be viewed as a thing of value. Because I am eating foods that are plant based and brimming with nutritional contents, my body responds favorably by possibly reversing and or preventing any further cell damage of which I may encounter if, by choice, I was still eating a diet dead by nature and devoid of any life sustaining nutrients, whatsoever.

I advocate a diet rich in WFPB because I took it upon myself to get educated on how it would assist me in obtaining my health goals. And after doing so, I am thoroughly convinced that it will prove to have a very dominant impact on my level of success in safeguarding against harmful contaminants from foods that set up disease in the body and ultimately lead to a premature death. I loved my parents dearly and they taught me a lot of valuable life lessons. But what they did not teach me is how to eat to live; for how can one teach what one does not know. Rest in peace Mama and Daddy. I will be the voice you never had.

Sharon W.
North Las Vegas, NV

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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

Gifts Emerge

Spring 2011: My primary care physician (PCP) found elevated creatinine and protein in my urine.  I was feeling fine at this “well check-up ” until these test results. Anxiety rose. I felt frantic. The nephrologist believed that I had interstitial nephritis, an inflammation of the kidneys. It resolved somewhat by itself but did not go away. Whew! August 2011: My PCP wisely ordered an SPEP…and bingo! I was diagnosed with MGUS, the precursor of multiple myeloma. I was referred to an excellent, local hematologist/oncologist.

Fall 2011: Lots of tests including the bone marrow biopsy, showing 33{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5} plasma cells. I brought my test results to a myeloma specialist at MD Anderson. I did not have any of the “CRAB criteria” or any deletions. Should I be treated? He ordered a test for amyloidosis, which turned out positive. I did not or do not have any signs of amyloidosis. I had active multiple myeloma. I began induction chemotherapy immediately.

With the Revlimid, dexamethasone, velcade treatment, I reached complete remission in 3-1/2 months. I collected and froze my stem cells for possible future use. Happily glowing and feeling well, I stayed in remission for about 4 years using maintenance chemotherapy.  Spring 2016:  My blood markers started to rise slowly and I reconsidered autogolous stem cell transplant (SCT).

Now I am a bit over one week away from SCT at MD Anderson. I feel excited and anxious. I am at peace with my decision and my husband is a wonderful caregiver. My specialist and my transplant team at MD Anderson are excellent and responsive to patients. I feel ready.

Many gifts have emerged on my myeloma journey. The love from my family and friends is overwhelming and joyful. I became an active member of the IMF (International Myeloma Foundation) That is my second family! With their help, I launched the first multiple myeloma support group in New Mexico. Starting with about 10 members, more than 30 people attend most of our monthly meetings.

My co-leader, John, is a wonderful asset for our group. Being a physician himself, he knows many answers. And we always have many questions. The people in my support group are caring, sharing and loving. They are truly exceptional and courageous survivors – another gift.

I have attended several IMF Patient and Family seminars, Leaders Summit meetings and Teleconferences. All of these have increased my knowledge and awareness about MM. As I give my time to these various pursuits, I realize that the gifts I receive are too numerous to count!

And finally the gift of today shines forth. I am living a full life with my spouse, my nearby children and grandchildren, my volunteer work and facilitating a few teacher workshops along the way. I feel blessed. As I go into this transplant, I know that it will be hard work. And I am confident that there will be more emergent gifts in my life.

— Susan B., Santa Fe, NM, 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