Frequently Asked Questions about treatment at Huntsman Cancer Institute's Myeloma Clinic
Q: How many multiple myeloma patients have you treated?
A: Our myeloma specialists have more than two decades of experience treating multiple myeloma. During this time, they have each treated more than 5,000 multiple myeloma patients.
Q: What types of accreditation does your program have?
A: We are proud to be accredited by the Foundation for the Accreditation of Cellular Therapy (FACT). FACT accreditation demonstrates commitment to quality in cellular therapy and blood and marrow transplantation through adherence to rigorous standards verified by periodic inspection and peer review.
In addition, Huntsman Cancer Institute is a National Cancer Institute (NCI)-designated cancer center. NCI-designated cancer centers are characterized by scientific excellence and the capability to integrate a diversity of research approaches.
Q: What is your treatment approach, and what are the survival rates with your treatment?
A: We believe treating multiple myeloma aggressively on the front end is the key to long periods of remission, a longer life, and a better quality of life for multiple myeloma patients.
If you hit the myeloma cells hard at the beginning when they have not been exposed to treatment before, you will catch them off guard. Whereas, if you take the approach of starting off with less aggressive treatment and only moving to more aggressive treatment if a patient relapses, the myeloma cells have grown smarter in the meantime . The myeloma cells sense the effort to get rid of them, and they have time to grow resistant to treatment. Treatment will therefore ultimately be less effective.
We typically treat multiple myeloma with a regimen involving tandem (two) autologous stem cell transplants and maintenance therapy thereafter. This treatment method has been proven to result in median survival rates of 10+ years. No other treatment method for multiple myeloma has proven more effective in research studies.
Q: How soon can I get an appointment to see a doctor, and how do I make an appointment?
A: Generally, we are booked out three to four weeks in advance. To make an appointment with one of our myeloma specialists, please contact our new patient coordinator, Lori Griffin, at 801-587-4652 or toll-free at 1-800-664-8268.
Q: Can I come to HCI if I have already started treatment with another doctor?
A: Yes, you can transfer care to our facility at any stage of your treatment. However, all new patients are required to do a diagnostic work up before having a consultation with one of our specialists. The work up includes the following tests: 24 hour urine, echocardiogram/EKG, pulmonary functioning test, blood draw, PET scan/MRI, and a bone marrow biopsy with FISH and cytogenetics.
Q: Do you offer clinical trials?
A: Yes. Clinical trials are a critical part of the research process. They allow us to take scientific research that has proven to be effective in a lab and use it to treat people. This often gives patients treatment options they would not otherwise have and allows researchers to evaluate results, which will benefit patients in the future.
Q: How long do patients need to stay in Salt Lake City if they have the tandem transplant treatment you offer?
A: Initially, every new patient will go through a diagnostic work up and consultation with one of our myeloma specialists. You should plan on spending 4-5 days in Salt Lake City for two full days of testing and the consultation.
For each transplant, a patient will need to stay in Salt Lake City for about one month. The transplants are done on an outpatient basis with no need to spend nights in the hospital unless a complication occurs. However, patients are vulnerable during the treatment process and we want them to stay close to the hospital so they have immediate access to our medical team if they need it.
Our patients have their clinic visits during the day, but they stay in a hotel or extended-stay facility overnight where they can have some privacy and relax away from the hospital setting.
Q: Do you treat diseases other than multiple myeloma?
A: We also treat and/or evaluate patients with myeloma-related conditions, like amyloidosis, MGUS, plasmacytoma, etc.
Q: Why don't you recommend allogeneic transplants for myeloma patients?
A: We think an allogeneic stem cell transplant—a transplant using stem cells from a donor—is far too risky. One in four people will die from complications associated with the procedure. In contrast, when patients have an autologous stem cell transplant—a transplant using their own stem cells—the complication rate is only two to five percent.
Studies have shown that patients do not live longer with an allogeneic transplant. Therefore, we prefer autologous transplants because they are safer and just as effective.
Q: What kind of factors would make me ineligible for a tandem transplant?
A: A patient needs to be in relatively good health to have a transplant. There are some patients who have other medical conditions that make having a transplant too risky. Many times these other medical conditions can first be addressed and then, when they are under control, a patient can proceed with having a transplant.
Many patients ask us if they are too old to have a transplant. We have had patients in their 80s have a transplant and do very well, so age should never be the only reason a transplant is not performed. A patient's general state of health is the most important factor.
Q: What kind of support services and resources are offered at HCI?
A: Treatment for multiple myeloma is about much more than chemotherapy and stem cells transplants. We offer a variety of complementary therapies and services that focus on overall physical and emotional well-being. We also offer educational resources to learn more about multiple myeloma.
All of our patients and their caregivers have access to our Patient & Family Support Team. These professionals are available to address emotional, social, practical, and psychological struggles associated with a cancer diagnosis.
We offer support groups for patients and caregivers, as well as stress reduction and guided imagery classes. We even have an online support group that allows patients to connect with a member of our Patient & Family Support Team from anywhere at any time. Responses to questions will be posted within 24 hours.
We also offer patient education classes. The classes are designed to cover a broad range of issues related to myeloma and the treatment of this type of cancer. Also, our online Myeloma Chat allows anyone affected by multiple myeloma to ask our myeloma specialists a question and/or connect with other patients and caregivers affected by myeloma.
HCI patients and their loved ones also have access to free programs and services at the Linda B. and Robert B. Wiggins Wellness-Survivorship Center. This includes nutrition counseling, a fitness program, yoga classes, acupuncture, and therapy to help with anxiety and pain management.
In addition, the Huntsman Cancer Learning Center has the latest issues of relevant myeloma publications such as Myeloma Focus and Myeloma Today. There are medical books on topics such as autologous stem cell transplantation and books written by myeloma patients featuring their poetry and survivor stories.
Q: Is melanoma the same as myeloma? If it is, what does the difference in spelling indicate?
A: No, melanoma and myeloma are two completely different cancers. Melanoma is a skin cancer and myeloma is a blood cancer.
Q: What is the difference between myeloma and multiple myeloma?
A: There is no difference. The terms are used interchangeably. Myeloma is derived from the Greek words "myel" (meaning marrow) and "oma" (meaning tumor). Because malignant plasma cells almost always occur in more than one location, it is often referred to as multiple myeloma.
Q: How common is multiple myeloma?
A: The International Myeloma Foundation reports that each year there are approximately 19,900 new cases of myeloma in the United States. This represents approximately 10 percent of all blood cancers, and only 1 percent of all types of cancer.
Q: Is it hereditary?
A: Research into whether or not multiple myeloma runs in families strongly suggests that hereditary forms do exist. Click here to read more about genetic research currently being conducted at Huntsman Cancer Institute.
Q: What are the symptoms of myeloma?
A: Please refer to this page of our website for the answer.
Q: What causes myeloma?
A: There is no known cause of multiple myeloma, but we know myeloma starts with an abnormal plasma cell that multiplies and eventually crowds out healthy cells in the bone marrow.
There are certain factors that make a person more likely to have this disease, like age, sex, race, obesity, and the presence of other plasma cell disorders.
Growing older increases the chances of developing multiple myeloma. Men are 50% more likely to develop multiple myeloma than women. Myeloma is twice as common in African Americans than in Caucasians, and the risk of developing multiple myeloma is lowest among Asian Americans. If a person is overweight or obese, he or she is at increased risk of developing multiple myeloma. And, some people with plasma disorders like MGUS (Monoclonal Gammopathy of Unknown Significance) or a solitary plasmacytoma can eventually develop multiple myeloma.
In addition, some studies have noted that exposure to toxic chemicals—like agricultural chemicals, Agent Orange used in Vietnam, and petroleum products—as well as radiation can trigger myeloma. Other factors thought to increase the risk of developing myeloma include frequent use of hair dye and breast implants, but the data to support these claims is very weak, so this has not been proven.
Q: My brother has multiple myeloma and he is telling me that it is now affecting the lining of his brain, as well as his lungs. Can this happen? I thought this cancer was of the bone.
A: In the early stages of multiple myeloma, the myeloma cells can only grow in the bone marrow. As the disease becomes more aggressive, usually after several treatment methods have failed, the myeloma cells learn to grow outside the bone marrow in places like the brain and the lungs. When myeloma cells grow there, it indicates advanced disease.
Q: I am not ready for chemotherapy or a stem cell transplant because honestly, with the way I feel, I don't think I would survive it. I am tired all the time and get sick easily because of my weakened immune system. I had an MRI and some x-rays. They showed I have a lesion in the skull, one in the right leg, and what they think are some in my spine. Any advice?
A: It's important to remember that while you may not feel up to chemotherapy or a stem cell transplant, getting treatment is key to getting rid of the symptoms of multiple myeloma, like lytic lesions and a weakened immune system. Treatment is what will make you ultimately feel better.
Also, if you are very tired, there is a good chance you are anemic, which is another symptom of myeloma.
The key to good treatment is getting treatment on the front end that is effective so that you will stay in remission. It may be no fun, but it is worth it eventually so you can have a good quality of life.
If you delay treatment, dangerous things could happen as a result of the myeloma. For example, you could go into renal failure or be hospitalized for a compression fracture. You have symptomatic myeloma, and that means it's time for treatment. We want you to have the very best chance at fighting this cancer and at a good life!
Q: Should someone with myeloma be inactive on an ongoing basis to minimize the risk of breaking a bone?
A: It's actually quite important that someone with myeloma be as active as possible. Since myeloma affects the bones, exercise can prevent the loss of bone mass. It can also help with stability in walking and balance, which is good because people with myeloma can be more hurt compared to the average person if they fall because their bones can be more brittle.
During treatment, exercise can decrease the chance of cancer-related fatigue, help the body recover, keep muscles from losing strength, improve mood, and combat insomnia.
For all these reasons, we would encourage myeloma patients to exe?rcise regularly if they are able to do so. To minimize the risk of bone fracture, patients should stick to low-impact exercises like swimming, walking, cycling, or crosscountry skiing. HCI's Wellness-Survivordhip Center can help you set an exercise routine.
|For more information, or to schedule an appointment, call 801-587-4652|