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Jessie Barksdale remembers 1986 well. It was when she was told she had cancer. She recalls asking her doctor: “Do you think I’m going to make it?”
Diagnosed with multiple myeloma, the second most frequent type of blood cancer, Barksdale had a right to be concerned. Based on statistics, she didn’t have great prospects. Multiple myeloma affects about five in 100,000 people and is often not diagnosed until the disease has progressed. Most patients are told they have a short time to live.
Multiple myeloma is a cancer of the plasma cells, a type of white blood cells in the bone marrow — the soft, blood-producing tissue in the center of most bones. The exact cause of the disease is unknown, but doctors know that multiple myeloma begins in the bone marrow with one abnormal cell that multiplies. While the condition, which most often affects older patients, can be managed, there is no cure.
The disease can cause bones to thin, leading to fractures and pain. It can also cause low red blood cell count and fatigue. As the myeloma cells crowd out normal cells in the bone marrow, the production of normal blood cells is affected. This process can cause anemia, prevent normal blood clotting and interfere with the body’s immune system, leading to infection or kidney failure.
Because Barksdale’s illness was caught early, she was able to forgo traditional therapy for a time. But in 1998 she relocated to Palm Coast, Fla., and sought an oncologist for continued monitoring. A family member referred her to Mayo Clinic.
“I’m from Harlem,” says Barksdale, now 73. “I had never heard of Mayo Clinic. But my niece said it’s the best place in the world to go for your disease. So I made an appointment.” Larry Solberg, M.D., a hematologist/oncologist, became her “guardian angel,” she says. “He told me I had taken wonderful care of myself, but progress was being made with treatments and it was time for additional therapy now.”
She began a chemotherapy regime, which is common for most multiple myeloma patients, but over time, the disease continued to escalate. With two grown children and grandchildren, Barksdale wasn’t sure what more to do. “I got to the point where I thought what’s to be will be, and I just asked God to give me strength.”
Dr. Solberg and his colleagues at Mayo Clinic were working hard to find new alternatives for patients with multiple myeloma.
“There has been a lot of work into understanding a person’s unique myeloma and tailoring a treatment plan to his or her particular situation,” says Vivek Roy, M.D., a colleague of Dr. Solberg and medical director of the Blood and Marrow Transplantation Program at Mayo Clinic’s campus in Jacksonville. “Research is leading to earlier diagnosis and more effective treatments and therapy combinations to extend the lives of patients with multiple myeloma.” Doctors suggested Barksdale undergo a bone marrow transplant. The goal was to repopulate the bone marrow that had been compromised due to the toxic effects of the chemotherapy and the multiple myeloma itself.
On February 13, 2001, Barksdale underwent what she described as a relatively painless procedure Due to her condition, Barksdale was able to undergo an autologous donation where her own cells were used to replenish her body’s supply of healthy blood-forming cells. She’s been in remission ever since. “When I realize how long I’ve been in remission and I look back at all I’ve gone through, I’m so thankful,” Barksdale says. “A lot of people get this diagnosis and think it’s the worst scenario, but look how far I’ve come. It’s been more than 20 years and I’m still here.”
Despite her disease, Barksdale has been able to enjoy life, especially daily walks and evenings out with her husband. She’s thankful for the advances in care. “I’m a testament of how far we’ve come.”
Says Dr. Roy: “We still have work to do to find best treatment for multiple myeloma, but stories like Ms. Barksdale’s give us hope, encouragement and inspiration for the future.”
God bless you Jessie.
I’m so happy to read this article. I was diagnosed one year ago through my annual pysical. I also suffered 5 1/2 months of C-Diff bacteria during my chemotherapy. I am now scheduled to have my stem-cells harvested in a week and then on to the transplant. I’m stuggling with this decision but am following my oncologist recommendation. Thank you for the possitive encouragement.
By now I imagine you are well on the road to recovery! My brother,age 48, will be receiving a transplant soon. We are so very grateful for all the progress that has been made in treating this dreadful disease! Good wishes for a speedy recovery!!!
My husband just found out he has MUltiple Myeloma but due to age he doesn’t qualify for stem cell transplant- he’s 80 but in terrific shape. He also has aorta stenosis- a narrowing of his aorta so can’t do much exertion or he gets chest tightness. Going to start on veal aid with steroids and an anti-shingle med in 2 weeks. Are there any success stats on those who can’t have stem cell transplants?
We’re looking into your question.
my father was diagnosed with multiple myeloma 2 months back. he had low platelet counts for about 1 month due to which various investigations were done and disease was diagnosed. 70% of his marrow was infiltrated with plasma cells. his beta2 microglobulin was 5.3. rest all parameters were normal. no deletion in cytogenetics. no M band, also nothing on light chain assay.was diagnosed as non- secretory type. he was started on velcade, dex, thalidomide(100mg) chemotherapy and now have completed 3 cycles which he tolerated very well(he is a doctor a is doing his regular opd and ot). our hemato-oncologist have told that he should undergo BMT as soon as possible after 4 th cycle but my father wants to wait for 2 months so that he can do a family function. can we wait for 2 months?
Hello, Thank you for your questions, we have forwarded them onto one of our specialists to see about a possible response.
“The management of each patient with myeloma must be individualized. It is standard, however, to collect peripheral blood stem cells to save those for possible autologous stem cell transplantation after 4 cycles of treatment with these agents. The decision about whether to proceed to autologous stem cell transplant rather quickly or to continue effective treatments after harvesting stem cells again must be worked out for each patient.”- Lawrence A. Solberg, M.D.
thanks for your answer. yesterday i had a talk with my oncologist and he told that we can give him 1 more cycle of velcade and then wait.
My Sister was diagnosed in February of 2011. She was 60 rears old. In Nivember of that year she underwent a stem cell transplant at Mayo clinic. She had excellent care there. We expected this disease would take her some day…..but hoped it could be managed as so many people talked about. We lost her Dec 8. This is a horrible disease….
Lisa, I am sorry to read of your loss. I appreciate your sharing about the excellent care your sister received. I am sure your support and love meant so much to her.
I am seeking help for my partner. He is 46 and diagnosed with inactive multiple myeloma. He found out with routine lab work and pain in lower back was only other symptom. He had 12.1 calcium in his blood and has had 1 zometa infusion that was very painful(pelvic, back and ribs) and fevers for 2 days after the infusion. The Dr is recommending he have another treatment and wait to see if he needs chemo. He is not anemic, kidneys are good and liver. His white cells count is low. The zometa helped as he no longer has calcium in the blood after the first treatment. I don’t know if he can be in a trial and am lost. The Dr has not recommended anything else for him. Any suggestions on what he can do? He had skeleton survey, CT scan of abdomen/pelvic and bone marrow biopsy. Thank you.
Hello and thank you for contacting us. We are sorry to hear about your partner’s diagnosis, but unfortunately, we cannot provide specific recommendations or suggestions through this site. If you would like to have him meet with one of our hematologists, then please contact the Appointment Office directly and the representatives will definitely be able to assist you. http://www.mayoclinic.org/patientinfo/appointments.html
PS.. This was a great article! I wish all of those posting the very best.
This is my 11th year of battling multiple myeloma. I have a great hematologist/oncologist in the Los Angeles area. I’ve undergone to BMT’s and an autologous stem cell transplant, all of which were positively successful. That’s no I say side effects and several surgeries occurred as a result of meds and chemotherapy.
Currently,, I’m taking velcade, decadron, and revilmid; which are also working well. Throughout this journey, I’ve tried several cocktails and have only been in remission once for about 2 or 3 months. My disease is aggressive and I’m very tired. I’m only 52 yrs of age, yet I feel like a 90 year old.
Hang in there people who feel hopeless as my prognosis was 2 months.
jacqueline,
you sound very courageous! we are looking for a new hematologist in the LA area, if you can refer that would be great.
What is the usual treatment schedule for melpalon and prednisone? Also for mephalon, thalidomide and prednisone ?
I am 67 years old…was diagnosed with MGUS two years ago…there have been three first cousins with myeloma in the family–one of my Dad’s side and two on my Mom’s…and my niece has been battling myeloma and amyloidosis for almost 10 years now…my M-1 protein level has gone from 2.2 to 3.1…bone marrow detected 7% plasma cells 2 years ago…kidneys are okay and full body x-rays show no lesions…MRI of my spine was okay except for some bulging discs…I have fibromyalgia so it is hard for me to distinguish between that and possible MM symptoms. I have repeated bronchitis and colds and it takes me a long time to get rid of them. At my last visit the oncologist said I was at the smoldering stage of MM. So far there is no treatment. How high does the M-1 protein level have to be before I would start treatment?
How long does it take from the time you have your cells removed for an autologous bone marrow transplant and the time you are well enough to go out in public? People don’t usually describe the process and I think it would be very helpful if they did.
It has been almost 90 days since my autologous BMT. In August of 2012 I was diagnosed and very sick. My oncologist continues to be amazed at my progress as it was questionable in the medical team’s minds as to whether I would make it through the weekend back in August of 2012. There have been ups and downs, and I did the typical 4 cycles of chemo plus one more infusion. Then, prior to the BMT, there was one more infusion of chemo that made me very sick and caused me to lose my hair. Those of us diagnosed go through a lot but there is so much hope. I am a patient at the University of Colorado Hospital Cancer Center and am doing great. Blood tests show Myeloma markers are on the decrease. Of course I remind my doctor and nurses there is someone else on the team so I must thank God. Stay hopeful and faithful! There is so much that can be done when someone has this disease. We are treated individually of course but there is always hope. God Bless everyone and thank you too for the article that gives us hope and increases our faith.
Thank you Pamela for your encouraging words and steadfast faith through all these dreadful times. Still praying for your complete and amazing recovery.