Category: Patient

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Myeloma Stories Patient

Live Each Day to the Fullest

My story of MM starts with a trip to the doctor for a routine physical. As part of my checkup, a CMP was drawn which showed an elevation in my protein level. I was called by the doctor who indicated she wanted me to have further tests because this elevation is seen in those with MM…a type of Cancer!! I was shocked, but thought to myself that so many advances have been made in the field of cancer…what were the chances this was a type of cancer which was unable to be cured?? The year was 2013. I was diagnosed with MGUS.

From there I established care with my oncologist. He informed there was about a 1{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5} (cumulative) chance annually of converting to MM….not bad, I thought…in 30 years I would have a 30{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5} likelihood of advancing to active disease and by then I would be 80 years old!! I blew those odds out of the water and was diagnose with smoldering myeloma in 2015!!

I entered a clinical trial, only to be placed in the control group of observation and progressed to active myeloma in 2017…began treatment (again in a clinical trial and, once again, placed in the control group of standard treatment). A stem cell transplant was performed over Christmas 2017 and I am currently recovering from that and beginning maintenance therapy. I can only hope and pray for continued advances in medicine to either cure this disease or make it a chronic disease which is highly treatable. I search for avenues to share with others to generate support. Programs such as Donate a Photo, Compute for Cancer, Mission Myeloma are just a few of the organizations funding research to search for cancer cures and spread the word about needed research. Pray hard and live each day to the fullest…we never know what life has in store for us!!

—Paula K.

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Myeloma Stories Patient

The New Normal

In 2013-14 I went from doctor to doctor to doctor…a 5 day stay in a hospital, trying physical therapy, pain meds, and injections at a pain clinic for about a year. During that year, of not being diagnosed with anything, bones in my back, ribs, and sacrum were fracturing. FINALLY, in June of 2014, I was put in touch with a VP from Spectrum Health, who is a neighbor of one of our daughters. I think my guardian angel was at work! 🙂 The first thing the oncologist, to whom she referred me, did was a hip biopsy & diagnosed Multiple Myeloma cancer. What a shock! I had always been relatively healthy and active, until I could no longer stand. My doctor, recommended a stem cell transplant and, after a bit of decision making time, I agreed to that.

That process took my blood through a machine that separated out stem cells. They were sent to a special lab to be treated, then returned, frozen, to my bedside for infusion back into me. I was in the hospital for 13 days (within the average) and did have a LARGE dose of chemotherapy before the infusion. Eventually, from that, I lost my hair, but it grew back quite curly.  This entire process was not any fun. My taste buds had changed, and everything tasted like wet cardboard; so, I couldn’t swallow it. I was down to 105 pounds before I was able to eat again. My husband, the BEST caregiver ever!!! would strongly encourage me, usually to no avail – in fact, he did yell, but for my good.

When I first started seeing my oncologist, he said “the protocol I will put you on now, may be changed the next time I see you, because advances in this field are happening EVERY SINGLE day.”

I have been on many medications for pain and the cancer, including a VERY expensive one that, had I not received a grant, I would not have been able to afford. Through this journey, I have learned that there are many things I can no longer do (tennis, etc), but have found others I can do. I have learned that, when the pain in my back begins to worsen, I need to sit down which has never been me, but it is my “New normal.”

As of today, there still is no cure, but longevity has increased.

— Geri K.

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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

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