Frequently Asked Questions

The following questions and answers are offered as additional information. They are based on actual questions that were asked by people who sent e-mail inquiries to MIRT@uams.edu.

While some of the questions may not be frequently asked questions, they might be of interest. Please keep in mind that every case is unique and that any specific questions you might have should be directed to your health care provider.

We welcome inquiries at MIRT@uams.edu.


My father died about 5 years ago from multiple myeloma. I was the bone marrow donor for his transplant. I am an only child and am wondering about my risk factor for myeloma, especially since my marrow was considered a good match.

Your risk is slightly higher than that of somebody with no myeloma in the family, but still very low and nothing to worry about.
 

My father, who is in his seventies, was diagnosed with Multiple Myeloma. A biopsy of his right thigh showed amyloids as well. What is the optimal treatment for curbing amyloidosis in the presence of myeloma?

The best way to treat myeloma with amyloidosis is giving a stem cell transplant, if the patient's general health allows. Age alone does not disqualify patients from having a transplant. We have done more than 100 transplants in patients over 70 years old.

My father, who is in his 70s, was diagnosed with multiple myeloma. A biopsy of his right thigh showed amyloids as well. What is the optimal treatment for curbing amyloidosis in the presence of myeloma?

The best way to treat myeloma with amyloidosis is giving a stem cell transplant, if the patient's general health allows. Age alone does not disqualify patients from having a transplant. We have done more than 100 transplants in patients over 70 years old.

My father was diagnosed with asymptomatic multiple myeloma. The physician recently seen recommended no treatment besides bone strengthening until symptoms appear. He did inform us that my father's condition would be monitored every other month to determine when treatment would be necessary. Is this the normal course taken with asymptomatic multiple myeloma patients? How long after a patient is diagnosed would one expect to see symptoms?

The key is to know if he needs treatment now or not. That decision can be made only if we have freelites, bone marrow, skeletal survey, MRI, PET scan, cytogenetics and gene array results. You do not want to start treatment too early, but also not too late. If you start too late, the chances of a long survival will decrease.
 

My father was recently diagnosed with Small Cell Lung Cancer. He also has Multiple Myeloma, which has relapsed. He has multiple lesions in his pelvis, hip and knee, for which the doctors want to do radiation therapy. He has been having chronic pain. What complicates things is the lung cancer – his doctors say they can not do chemo and radiation at the same time. Do you have any clinical trials that may benefit him?

With two malignancies at the same time he would not qualify for any of our clinical trials. However, he could very well receive treatment that would normally be reserved for someone on a clinical trial on a compassionate basis. It would be best for him not to get radiation because of the potential of damaging the marrow in the pelvis region. We prefer to use radiation only after other means have been exhausted.
 

I have multiple myeloma. How soon after the first transplant do you advocate doing the second transplant? What is the success rate for the tandem transplants?

We recommend that transplants be two to three months apart. Current data show that tandem transplants double the rate of both event-free and overall survival. Event-free survival means there is no relapse.

The data are very closely related to certain disease features such as chromosome abnormalities. We have been doing major research in the area of molecular genetics and are able to determine prognosis with a great deal of accuracy through gene expression profiling. We are also beginning to use gene expression profiling as a tool for assisting with treatment determinations.
 

My husband was diagnosed with stage one myeloma. He has no tumors or lesions, slight amounts of M proteins in both blood and urine, and 20% plasma cells in bone biopsy. Are you currently treating patients in early stages of the disease? If so, how can we find out about your treatment options? We have been advised to wait until the symptoms become more pronounced.

We currently have a clinical trial for people with smoldering/indolent myeloma. It involves combination bisphosphonate and anti-angiogenesis therapy with Pamidronate and Thalidomide. The main objective is to slow the progression to fully active, progressive myeloma.

In some cases we would recommend treatment at this early stage. We would base this recommendation on certain features of the disease as revealed by examination of bone marrow, radiology films, blood and urine profiles, and chromosome analysis. The radiology testing includes MRI and PET scans. The chromosome analysis looks for overt abnormalities, as well as abnormalities on a molecular basis through gene expression profiling.

We would put the results of these tests together to build a better picture of your husband's myeloma and help us determine when treatment should be started.
 

I have been diagnosed with MGUS. I cannot find information in layman’s terms. I know 20% progress to Multiple Myeloma. How long does this take? What about the other 80%

The conversion rate from MGUS to something else is about 1% per year. In 25 years 26% will have developed something. We are currently doing a major project to evaluate MGUS and compare it to myeloma. What we have found is that MGUS and myeloma have similar profiles. We can shed some light on your current MGUS and possibly tell if it looks like you may have a chance to develop myeloma earlier. It is a better possibility though that you may have MGUS for the rest of your life and never get myeloma.

The younger a person is with MGUS the more likely the chance of developing myeloma later. The remaining people that do not develop myeloma, but continue to have MGUS may only have minimal problems due to it. Some people with MGUS have had it actually go away.

We currently have an observational protocol for people with MGUS that calls for monitoring them for 5 years. We do standard MGUS follow-up with some research to help identify any signs suggesting that it could progress to myeloma.

My father has been diagnosed with multiple myeloma. He is 72 years old. Could he be a candidate for bone marrow transplant at his age? I feel that even though my dad is 72 he is still young. Before this he was very active and healthy.

There is no specific age cut-off regarding transplantation. Many of our patients who are the same age as your father or older have successful transplants. Whether or not a patient is a candidate for transplant is related to medical indications, not to age.

My mother passed away four years ago at age 85 from multiple myeloma. She was diagnosed with the disease only two months before she died. Her father died in his sixties of leukemia. Am I at risk for the disease? I have two other siblings and we all have children. Should we be screened for the disease?

You are at a somewhat increased risk for myeloma. However, your risk is still extremely low, so low that doing anything preventive would not be warranted. If more than one member of your immediate family had myeloma, screening might be advisable.

My 56 year old twin brother told me he has multiple myeloma. I am a female who goes to the doctor every six months for blood work and check-ups. Should I be screened for multiple myeloma? If so, what tests should be done?

It is not necessary to be screened. If you want to be screened for peace of mind, you would want the following tests done: SPEP (serum protein electropheresis), UREP (urine protein electropheresis), and ESR (erythrocyte sedimentation rate).

I am 59 & I have multiple myeloma. I am currently in remission. I just got off thalidomide and I am experiencing peripheral neuropathy in my feet and hands. Have you had many complaints from patients about neuropathy when they are on thalidomide?

Neuropathy with thalidomide is very common. It is only reversible if thalidomide is stopped or decreased in a timely fashion.

I am a multiple myeloma patient. I have had chemotherapy and a stem cell transplant and am currently in remission. Is it helpful to be on thalidomide at this stage to help keep me in remission?

You will need some form of maintenance therapy, best given as a combination of velcade, dexamethasone and thalidomide. Without any further treatment you have a very high chance of your disease recurring.

Can exposure to benzene cause Multiple Myeloma?

There is no proven link between benzene exposure and developing myeloma.

I am a 48 year old patient with stage 1 multiple myeloma. My doctor has recommended 4 months of chemotherapy, either VAD or a thalidomide/dexamethasone trial, followed by a single stem cell transplant. If I have thalidomide/dexamethasone will that preclude my being able to have a tandem transplant?

Thalidomide/dexamethasone would not preclude a tandem transplant, but there could be concern over adequate collection of stem cells with continued thalidomide.

What is the prognosis for someone with a solitary plasmacytoma?

Plasmacytoma is frequently not solitary but can be associated with clinically quiet myeloma. At our center we routinely use MRI and PET imaging to scan the entire body to look for subclinical evidence of myeloma. Even if tests indicate solitary plasmacytoma, there is risk for evolution to multiple myeloma. The individual should have laboratory tests every three months and be checked by a myeloma specialist annually. If new symptoms occur, immediate attention from a myeloma specialist should be sought.

My mother is 53 years old and was recently diagnosed with multiple myeloma. I am interested in whether an allogeneic stem cell transplant can result in a cure.

The cure rate with allogeneic transplants is not higher than with autologous transplants if we consider all myeloma patients. However, there is a subgroup of patients with poor prognosis based on cytogenetic abnormalities for whom we might recommend allogeneic transplantation. For all other patients we typically prefer autologous transplants. We strongly believe that myeloma patients need 2 autologous transplants followed by more chemotherapy in order to have a chance for long term survival.

I am a 41 year old female diagnosed 4 years ago with MGUS which has recently progressed to stage 1 myeloma. My doctor did a bone marrow biopsy and we are awaiting results. If results are not good he wants to start me on chemotherapy. If results are good, he wants to hold off treatment and keep a close watch. What is your opinion?

You need a more complete workup including MRI and cytogenetics to see whether you need treatment. At your age chemotherapy alone is unlikely to be your best option. If treatment is indicated by results of a complete workup, more aggressive therapy including stem cell transplant would probably be recommended.

My brother recently completed a second course of VAD. He has detected an odor and his taste is also off. We had been told that his taste might be distorted, but no one mentioned anything about smelling bad.

Unusual body odor is not a common side effect of VAD. However, some people can develop elevated blood sugars from the decadron in VAD and this can cause body odor. Your brother should contact his doctor to discuss this problem as an elevated blood sugar level can be dangerous.

I have been diagnosed with smoldering mulitple myeloma. My family physician has recommended an antidepressant to help me deal with the anxiety I am having. Is there any research about antidepressants and how it may affect the progress of multiple myeloma?

The anti-depressive medication will have no impact on your disease. However, it is important to know if you really have smoldering myeloma, which does not require treatment, or early myeloma which may require therapy. Such a distinction will require at least chromosome analysis of the bone marrow, a MRI and a PET scan.

I have multiple myeloma. I had radiation, chemo and stem cell transplant over the course of a year . I have been in remission ever since. I have not had any maintenance therapy other than Aredia infusions. Do I need to be on maintenance therapy?

Yes, you need additional therapy. Your chances of a long remission without it are slim.

I am a registered dietician in private practice. I have a client with multiple myeloma who wants nutritional recommendations. She wants to increase her blood counts. Can you advise?

A dietician who works with myeloma patients at our center answers: I get many questions on specific phytochemicals and myeloma; I am unaware of any research on myeloma and phytochemicals. When patients are receptive to changing their diet, I usually try to provide a list of different phytochemicals and their food sources. The biggest problem I encounter with myeloma patients is poor intake of protein and calories due to effects of disease progression and treatment. Side effects can change from week to week depending on whether the patient is receiving high dose chemotherapy or has just had an autologous transplant. I always concentrate on meeting energy and protein needs first by documentation with calorie counts. Then, if the patient is doing better, we start on phytochemicals. Decreased red blood cell and white blood cell counts are common side effects of chemotherapy. While patients are aware of this, they often overlook the fact that poor nutrition can also play a role. I try to emphasize that eating well is part of therapy, just like medications and different procedures. The American Cancer Society has a section about nutrition on their website that many patients find helpful. http://www.cancer.org/docroot/MBC/MBC_6.asp

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