Sean’s Burgundy Thread: New Multiple Myeloma Patients Are Put To The Test
“You have multiple myeloma.”
That phrase, delivered by physicians at the University of Arkansas for Medical Science’s (UAMS) in November of 2008, was the first official, irrefutable diagnosis of my cancer career. We suspected that I had myeloma, but there it was. They said it out loud, and it still reverberates in my mind.
While I would have much rather heard, “Tests show that there is a pea underneath your mattress that has been causing your back pain,” I knew that I wasn’t immersed in some grim fairy tale. What was happening was all too real.
After my diagnosis, I undertook a crash-course study of multiple myeloma. I understood, in very basic terms, that it was a cancer of the blood and bone marrow environment and that the diagnosis was not accompanied by the words “Congratulations, Sean!” This was bad news.
How exactly does one find out definitively that you have multiple myeloma? Well, a patient needs to navigate through an obstacle course of medical tests, and then minds, far more brilliant than mine, gather the data, interpret the images, evaluate the numbers, stain the blood cells, and perform countless other tasks to determine whether folks like you or me have myeloma.
By now, I’ve been through lots of tests. After some initial x-rays, a CT scan, and an MRI in my small town in Missouri, my local doctor sent me to UAMS to go through a more comprehensive medical workup by people who eat, breathe, sleep, and, more importantly, treat multiple myeloma every day. They know what they are doing. Besides, my insurance is in network at UAMS and not at two other institutions I investigated!
Just hours before traveling south for all of these tests, an old acquaintance whom I hadn’t seen in nearly twenty years, called me to say that he had been diagnosed with multiple myeloma a few years before. He’d traveled from Virginia to Arkansas for treatment and was doing very well. My friend didn’t pull any punches. He said that the course of treatment was tough, that there would be rough days ahead, but that I could get through it a day at a time. He said that my faith and good humor would serve me well. His encouragement bolstered my resolve to get on with things.
Before beginning the procedures in Little Rock, I needed to give them my Informed Consent, whereby I agreed that I had received enough information to understand what the procedures were, what risks and benefits were associated with the tests, what alternatives might exist, and what the potential financial considerations and costs would be. And forget the treatment; that was just for the tests!
I gave consent to proceed, but did I understand every nuance of every procedure and the methodology of every test? Nope. At this point, I was overwhelmed by pain and the potential of having a far advanced, life threatening illness. Myeloma information is confusing. I researched what I could and proceeded with the hope that I was surrounding myself with good people.
In very simple terms, the tests and procedures that I went through during my evaluation included:
- Complete Blood Profile tests quantified white blood cells, red blood cells, platelets, and other key components of my blood. Findings would help determine the quality of my bone marrow and the state of my kidney and liver function. Doctors also measured my miscellaneous blood chemistries, coagulation tests, and performed other analyses.
- Protein Electrophoresis was used to measure the amount of monoclonal (M) protein in my serum and my urine. An abnormal amount of M-protein in blood and urine samples would signify the presence and extent of myeloma.
- Bone Marrow Aspiration (BMA) and Bone Marrow Biopsy (BMP) were procedures done to estimate the number of myeloma cells active in my bone marrow and to determine the damage myeloma cells may have created in the marrow. My first BMP and BMA were done on the back of my left hipbone. Specialized needles went through the bone and into the marrow cavity and withdrew specimens of marrow and pieces of the bone. Of the dozen aspirations and biopsies I have had done since the first one, most were only mildly uncomfortable and healed quickly. The first one hurt like fire because my bone fractures were not yet appropriately medicated.
- Complete Skeletal Bone Survey evaluated any significant bone damage and the scope of bone disease caused by the myeloma. Non-invasive, low-dose x-rays of my hands, arms, legs, feet, ribs, back, pelvis, and skull captured the images needed.
- Magnetic Resonance Imaging (MRI) utilized a magnetic field and radio waves to create a computerized scan of my bone and bone marrow. More effective than x-rays in determining the exact location and approximate volume of myeloma cells, a series of MRI images through treatment periods can indicate progression of myeloma. MRI is a safe, non-invasive procedure. Sometimes a contrasting dye is injected into the patient’s vein. My first MRI took nearly 2 ½ hours, and while the procedure itself was painless, because of bone fractures, it was difficult to lie flat on my back on the table which slides into the MRI tube. As my bones have healed, the procedure has become much easier. Relaxation techniques and keeping my eyes closed help!
- Positron Emission Tomography (PET) Scan was done to show the presence of active cancer, whether my tumors were malignant or benign, and to identify other abnormalities that other conventional methods are unable to discover. PET scans can also detect multiple myeloma outside of the bone marrow and have proven to be a superior test for monitoring recurrence of myeloma. I fasted for several hours before the PET scan and was given a radioactive dye intravenously and a drink with tracer elements one hour prior to the test. This test, like the MRI, is a ‘table’ procedure and was only painful because of my numerous fractures.
- Cytogenetics Testing makes use of the obtained bone marrow samples to identify any chromosomal abnormalities in the myeloma cells. Doctors also use these Gene Array findings to make important treatment protocol decisions.
- Bone Densitometry was performed to establish bone strength, the amount of bone loss, and to provide baseline information for future comparisons. It was a painless, non-invasive test during which I laid down on my back with my feet propped up. A low radiation dose was used to scan my forearm, spine, and hips.
- Echocardiogram (ECHO) using sound waves captured a moving digital image of my beating heart. Doctors noted the heart’s functionality, structure, thickness, size, and motion patterns to determine heart health and prior disease.
- Electrocardiogram (EKG) graphically recorded my heart’s electrical activity and provided data about the heart rate and rhythm as well as the presence of past or current heart attacks.
- Pulmonary Function Testing was done to measure lung capacity and effectiveness and the quality of lung function. Spirometry measured breathing capacity and flow rates. Lung Volume Tests measured the total amount of air in the lungs and capacity volumes of the lung’s compartments.
After the test results came in, the consensus opinion in Arkansas was not wishy-washy.
“You have IgG kappa multiple myeloma, Stage III. Your bone marrow aspiration count shows that you have 77.5 percent plasma cells, your IgG measures at 5300 mg/dL, and your serum M component is at 4.5 g/ dL. You are anemic and have extensive bone disease. We recommend that you seek help immediately, and if you would like to be treated here, we would be glad to work with you.”
“Yeah, but how’s my cholesterol?”
I continued my quick research and discovered that there were different schools of thought regarding treatment for multiple myeloma. The Arkansas Total Therapy approach was overtly more aggressive than other protocols. I called other institutions, scoured Internet sites like the International Myeloma Foundation, talked to local doctors, and searched for myeloma patients wherever I could find them – all in the span of a week.
And I made up my mind. I decided to take a journey to Arkansas. I survived the tests, bring on the treatment! Next time I’ll write about the Total Therapy treatment protocol that I pursued.
I want to encourage you new folks out in “Myelomaville” to not be afraid of the diagnostic procedures. If you have questions, ask your doctors. Visit sites like the Myeloma Beacon’s Forums. All in all, the tests are no big deal. If I could get through this step, I know that you can! Stay well!
Sean Murray
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Sean,
Thank you for sharing this - informative with a little bit of humor. Since my husband was diagnosed in May and currently under treatment, we have also researched until my computer knows where I'm going before I get there!! What lab numbers mean, side effects, and just as importantly - what others are going through. I feel like we have a whole new set of friends - all seeking the same outcome. Currently, thinking of waiting on the next step of stem cell transplant - I like the way Dr Berenson thinks.
Thanks again, and stay well my friend.
I wish you and your husband the very best as you make treatment decisions, Kansas. There are several avenues, and with your proactive approach, no doubt you'll find what best fits. Stay strong! Thanks for visiting the Myeloma Beacon! Sean
Sean-
Very comprehensive list! I'm going to refer other patients to this column. Helpful! Glad you are doing better now after therapy- Pat
My mom was recently diagnosed with Stage III multiple myeloma. I have a limited understanding but I do know that it is more aggressive than they originally thought and it is missing the 13 chromosome. We are going to the University of Minnesota Bone Marrow Transplant Center tomorrow to have a consult. Any questions I should ask? What do we need to understand? Is there anything I shouldn't do?
Hi, Michelle:
I'm sorry that this respnse is coming to you in the middle of the night! And I'm very sorry to hear that your mom is battling MM. I applaud you for jumping into this fight as an advocate for your mom. We MM patients need caregivers like you. Take courage and stay strong. Your persistence, patience and dedication to your mom's well being will pay off.
It is my understanding that the drug Velcade is providing better results with the del-13 issue than previous paths. Maybe your mom's doctor will touch on this.
I would be up front and honest with your mom's physicians and tell them that you don't know a lot about MM, stem cell transplants, etc. Guess what? No one knows this stuff until they get in the middle of these kinds of situations. The docs know they we aren't MM experts.
Ask them if it was their mother, what would they counsel? Take notes and ask the consultants to speak with you in understandable terms. And keep asking until you understand. MM is confusing - it's not you, there's much to digest.
There are differences of opinion re: transplants. Some docs and patients try to forestall transplants until they are absolutely necessary and some camps do transplants as a natural course of treatment. Work with your MM team to try to see what will work best for your mom.
If you can, please visit the following sites for some good info:
International Myeloma Foundation: myeloma dot org
Multiple Myeloma Research Foundation: themmrf dot org
Myeloma Beacon resources/forums pages: myelomabeacon dot com
We will be thinking of you tomorrow. Know that exciting advances are taking place in the MM world.
Sean M.
Michelle,
My heart goes out to you and your mom. This site has very up to date information and a number of great contributing writers - Sean & Pat are two that I always read. There are also lots of articles from the most recent national conferences regarding novel therapies. Even after talking to the docs you will want to hit the internet to find out even more. Try to concentrate on the newest information on treatments and statistics. Personal websites and blogs also have very good information and you get an idea of what others are experiencing. The more knowledge you gather - the more questions you can ask the experts. Thoughts and prayers to you, your mom and family.
Sean & Kansas-
Thank you so much for your responses. We had a great visit with the doctor today. He had a wonderful bedside manner and was willing to take as much time as needed to answer questions. They are recommending she undergo two more rounds of chemo (ending in Sept) and do the transplant in October. The rest will be determined by her test results and her response to chemo. The doctor seemed very optimistic but also shared with us the best and worst case scenarios so I did not feel like he was a pollyanna.
Thanks for the information and support you provide.
-Michelle
Hi Sean,
May I ask what small town in Missouri you are from ? I am in Springfield, Missouri and am awaiting to see a hematologist for findings of proteins in my blood, I've been having strange symptoms of late...and the protein was found by my neurologist. I am also awaiting some other tests, I had a brain MRI which was normal but I'm having so many symptoms and I DO always have sore ribs and have had for a couple years now.
I SO appreciate this site...I'm praying I do NOT have MM, but if I do have it, I have hope after reading your and others posts!
God Bless you
Linda Gilliam
Hello, Linda:
I live in Kimberling City, MO - just outside Branson on Tablerock Lake and not too far away from you in Springfield. I, too, pray that you do not have MM, but as you said, there is advancing hope in dealing with this disease. I encourage you to stay strong and proactive as you move forward.
I am treated in Little Rock, AR but I understand that Hematology Oncology Associates of Springfield offers a support group for patients battling various blood disorders, including Myeloma. Meetings are held on the 2nd Tuesday of each month from 3:00–4:15 p.m. at Cox Medical Plaza #2, 3850 S. National Ave. in Springfield. For more information, contact Dr. Barbara Nash, Psy.D. at 417-269-6891.
I wish you all the best.
Sean M.
Sean,
Good write up of how it is in the beginning. I know for me it was absolutely overwhelming. Between the pain, radiation-induced fatigue, dex-induced mental haze, and the trauma of the diagnosis and worry about the effects on myself and more importantly my family, I was absolutely overwhelmed. If it wasn't for my wife I truly would have been overwhelmed and probably would not have made it. In my case she was the one who gathered all the information, coordinated with all the different doctors and clinics, made all the travel arrangements, made sure I took my meds, pushed my wheelchair when I needed it, and generally kept me alive. When people gush over how well I am doing and what a hero I am, I tell them that she is the real hero.
Her and a million other exhausted and under-appreciated caregivers. I would encourage people, especially us male people, to use the support of a caregiver if you have one available, be it your spouse, parent, sibling, child, or even just a good friend. Don't try to be a hero and shut them out. Embrace their support, and make sure you thank them and publicly recognize them for their support. Too often they are unsung heroes.
Hi, Frank:
I agree with you wholeheartedly. For many of us, when we're diagnosed with MM, life doesn't just change, it gets turned upside-down and inside-out. Confusion, uncertainty, fear, pain, and stresses of all sorts are familiar side notes in the early days. And like you, my wife was the hero as my struggle for healing began.
Blessed are those MM patients whom have strong, proactive, understanding caregivers. Their pain and perspective may be different than ours, but every bit as real. Their part of the story certainly embodies courage and commitment and they deserve every accolade accorded them.
Thanks for your very relevant note. Good health to you!
Sean
My sister Pamela came up to Canada from Little Rock to look after me. Without her I could not have made it. I live in Red Deer, and my care was 11/2 hours away in calgary.I owe her my life.
Dear Sean: This site is a God-send. Last week, drs. told my 60 yr. old brother they believe he has MM. He has had blood/urine/MRI tests. They need to repair T-11 fracture (vertebroplasty) to help control pain, hopefully today. And they'll do bone marrow biopsy at same time which will give definitive diagnosis and % plasma cells, etc. for staging. I'm so sorry you have this horrible disease but you have given me so much hope which I've not found at other sites (3-yr. median survival rate, intractable pain, etc., etc.).
My brother has extensive annual physical exam. I can't understand how he could have a fracture on Oct. 30, 2010, but no blood or urine work showed anything wrong earlier this year.
Hi, Marie:
I am sorry to hear that your brother is having to fight MM. There are so many stories as to how MM patients are diagnosed or misdiagnosed initially. The important thing is that the docs are getting a handle on your brother's situation.
Like you, I have received tremendous help from visiting this website. Great up-to-date scientific information and important patient perspectives in Pat and Lou's columns have given me courage.
I want to share with you that I underwent 3 kyphoplasties (T4, 11 & 12) and that they greatly relieved much of my pain. The procedures were not difficult to endure - I pray the same for your brother.
Please keep in touch with us here at the Myeloma Beacon. And please send our regards and best wishes to your brother. There is hope! Sean
Such a hope-filled perspective this column provides. Thank you all for sharing the hope you find. I have a very practical question - have any of you found the perfect mattress for your bed to give you the best possible rest at night? I would really appreciate a little discussion on this topic with people who have the same issues that I have.
Thank you for this information. It is very useful. I was diagnosed with MM February 17, 2009, just 11 days before my 50th birthday. I have been through the kyphoplasty (L-2)with great pain relief. I have had chemo/steroids and an autologous stem cell transplant (April 1, 2010). We did achieve remission, bone marrow biopsy - 0.01% (this % is abnormally low) and SPEP showing great numbers!
I would also like a recommendation for a good mattress, have been looking for months. Iknow, for me,the mattress needs to be firm.