I thought I’d make the most of my hospital day to update my blog. It’s been a while since I wrote, and that’s been for good reasons – whilst we didn’t manage to get away for a nice hot relaxing … Continue reading →
Hi gang- it’s been pretty rough around here. After 7 Darzalex infusions, they had to stop so that he could get radiation on his hip and both rib cages.We LOVE his Radiology Oncologist, Dr. M. This guy actually called Dom personally th…
It has definitely been yet another rollercoaster over the past couple of months! After my last results showed an increase of 2, my February results were stable…..brilliant news of course, although I can’t really explain rationally why there was a … Continue reading →
I thought I’d write a quick update for people on here as it’s been a busy couple of months since I explained about coming off maintenance therapy and I haven’t really had a chance to let people know anything. We’ve … Continue reading →
It was a rainy day Feb 28, 2006, when I was admitted to Sutter Memorial Hospital Bone Marrow Transplant unit. It was a small unit of only 6 rooms. Each patient is in isolation because of having little to no immune system working. Every day, a cleaner came in and did the entire room top […]
WBC: 6.7RBC: 3.41HTC: 32.9PLATELETS: 307Free Light Chains: ALL NORMALKappa: 1.44Lambda: 1.32Ratio: 1.08M-Spike: 0.3 Dropped from 0.5 in April after just a couple …
Well, gang- after complete remission for over 7 years, his MM has returned.His blood work and bone marrow biopsy showed absolutely nothing alarming. His hip had really been bothering him, so Dr. Safah ordered an MRI.We went to see her on Th…
NAPSI)—You may be surprised to learn that multiple myeloma is the second most common cancer of the blood, after leukemia. It starts in plasma cells, a type of white blood cell. In time, myeloma cells collect in the bone marrow and may damage the solid part of the bone and eventually harm other tissues and organs, such as the skeleton and the kidneys.
In fact, there are approximately 114,000 new cases diagnosed every year. If you or a loved one is among the 230,000 people living with multiple myeloma worldwide there are a few facts you should know.
What Can Be Done
For many people with the disease, an autologous stem cell transplant may be an answer for eligible patients. This involves collecting the patient’s own blood-forming stem cells and storing them. He or she is then treated with high doses of chemotherapy or a combination of chemotherapy and radiation. This kills cancer cells but also eliminates the remaining blood-producing stem cells in the bone marrow. Afterward, the collected stem cells are transplanted back into the patient, so the bone marrow can produce new blood cells.
To help people learn more about the disease and its treatments, the Multiple Myeloma Journey Partners Program was created.
This peer-to-peer education program for patients, caregivers and health care providers leverages storytelling as a tool to improve the patient experience. Journey Partners are multiple myeloma patients who have experienced similar emotions, faced the same challenges and asked the same questions about living with the disease. A Multiple Myeloma Journey Partner will come to any community in which 10 or more people would like to attend the free one-hour educational seminar. The main benefit is that multiple myeloma patients know they’re not alone, and the program provides educational resources and services that help patients and families navigate their journey to achieve the best possible outcomes.
As John Killip, a Multiple Myeloma Journey Partner, puts it, “It was conversations with my support group, family and health care providers that influenced my decision to have a stem cell transplant in 2008, when I was first diagnosed with multiple myeloma, at the age of 65. Mentoring other multiple myeloma patients is one of the highlights of my life. I became a Journey Partner to share my story and help others with the disease make sense of the diagnosis and overcome the fear of the unknown.”
For more information or to request a program, you can visit www.mmjourneypartners.com. Anyone interested in becoming a Multiple Myeloma Journey Partner can contact the program coordinator listed on the website. The program is sponsored by Sanofi Genzyme, the specialty care global business unit of Sanofi focused on rare diseases, multiple sclerosis, immunology, and oncology.
Stem Cell Transplant for Multiple Myeloma
In a stem cell transplant, the patient gets high-dose chemotherapy (sometimes with radiation to the whole body) to kill the cells in the bone marrow (including the myeloma cells). Then the patient receives new, healthy blood-forming stem cells. When stem cell transplants were first developed, the new stem cells came from bone marrow, and so this was known as a bone marrow transplant. Now, stem cells are more often gathered from the blood (a peripheral blood stem cell transplant).
Stem cell transplant is commonly used to treat multiple myeloma. Before the transplant, drug treatment is used to reduce the number of myeloma cells in the patient’s body. (See Chemotherapy and Other Drugs for Multiple Myeloma.)
Stem cell transplants (SCT) are autologous and allogeneic.
For an autologous stem cell transplant, the patient’s own stem cells are removed from his or her bone marrow or peripheral blood before the transplant. The cells are stored until they are needed for the transplant. Then, the person with myeloma gets treatment such as high-dose chemotherapy, sometimes with radiation, to kill the cancer cells. When this is complete, the stored stem cells are infused back into the patient’s blood.
This type of transplant is a standard treatment for patients with multiple myeloma. Still, while an autologous transplant can make the myeloma go away for a time (even years), it doesn’t cure the cancer, and eventually the myeloma returns.
Some doctors recommend that patients with multiple myeloma have 2 autologous transplants, 6 to 12 months apart. This approach is called tandem transplant. Studies show that this may help some patients more than a single transplant. The drawback is that it causes more side effects and so is riskier.
In an allogeneic stem cell transplant, the patient gets blood-forming stem cells from another person – the donor. The best treatment results occur when the donor’s cells are closely matched to the patient’s cell type and the donor is closely related to the patient, such as a brother or sister. Allogeneic transplants are much riskier than autologous transplants, but they may be better at fighting the cancer. That’s because transplanted (donor) cells may actually help destroy myeloma cells. This is called a graft vs. tumor effect. Still, in studies of multiple myeloma patients, those who got allogeneic transplants often did worse in the short term than those who got autologous transplants. At this time, allogeneic transplants are not considered a standard treatment for myeloma, but may be done as a part of a clinical trial.
The early side effects from a stem cell transplant (SCT) are similar to those from chemotherapy and radiation, only more severe. One of the most serious side effects is low blood counts, which can lead to risks of serious infections and bleeding.
The most serious side effect from allogeneic transplants is graft-versus-host disease (or GVHD). This occurs when the new immune cells (from the donor) see the patient’s tissues as foreign and so attack them. GVHD can affect any part of the body and can be life threatening.
For more information about stem cell transplants, including details about the processes and side effects, see Stem Cell Transplant for Cancer.
In 2008, Traver Hutchins was the president of his own health care education company. Strong and athletic, he did not hesitate when a financial backer asked him to have a check-up as part of the insurance process. It was, after all, a standard and routine request.
What happened next was anything but routine.
“I found out I have a disease I had never heard of before,” Hutchins says, “and that it was ‘smoldering,’ meaning there were no symptoms.”1
The disease, multiple myeloma, is a rare, fatal cancer of the blood plasma cells.1 It affects 30,000 people each year.1
Hutchins was profoundly affected by the diagnosis. “My father died young of a blood cancer, non-Hodgkin lymphoma, when I was a teenager,” he says. Remembering the effect of that tragedy on the rest of his family, he re-evaluated many of his own life choices.
Despite being asymptomatic, Hutchins scaled back his activity at work and handed over the company to a new president—a decision he now considers premature. “In retrospect, that was a big mistake,” Hutchins says. “I should have soldiered on.”
Hutchins waited for four years after the initial diagnosis before he experienced his first symptom: back pain he attributed, mistakenly, to a hockey injury. After months of physical therapy, an MRI revealed that he had a compressed vertebra and bone lesions, the result of an accumulation of plasma in his spine.
Following the MRI, Hutchins underwent his first treatment: kyphoplasty to restore the vertebra and a combination of medicines. His cancer went into remission. But given the current state of myeloma treatment, relapse is inevitable.1 He bided his time.
For three years Hutchins monitored his blood levels diligently but they did not register his relapse, not even when he experienced more back pain and a return of the cancer in early 2016.
“The pain increased much quicker this time and the cancer was further along by the time we detected it,” Hutchins says. “I take full responsibility for not moving on the pain sooner, but I would have moved faster if the blood tests had indicated anything.”
After two rounds of radiation, another kyphoplasty procedure, and a laminectomy to relieve spinal pressure, Hutchins chose to undergo a more invasive treatment which involved the replacement of bone marrow with stem cells. To induce a remission in advance of the transplant, he underwent two rounds of induction therapy. The first round failed, but the second round was successful. Hutchins received a stem cell transplant two weeks later.
“I am now in the post-stem cell replacement phase,” he says, “waiting for my batteries to power up as well as my immunities.”
“I have about a month of being hypersensitive to avoid any potential infection,” he says.
Hutchins hopes that he will be ready to go back to work in three months and resume a relatively normal schedule. But he also knows that his fight is not over and that his long-term prognosis diminishes with every relapse.2-4
He looks forward to the day when multiple myeloma is considered chronic and manageable, rather than incurable.
“The research groups and clinicians have expanded the lifetime expectancy massively from fifteen years ago, and even from when I was diagnosed,” he says. “But we really need to break through and figure out how to get to the right medicines for the right type of myeloma.”5