ADEM often occurs after exposure to immunizations, or infectious agents such as Epstein-Barr virus, cytomegalovirus, herpes simplex virus and mycoplasma. There is no known direct connection between acute disseminated encephalomyelitis and multiple myeloma. However, having myeloma may have increased her susceptibility to one of these infections. Most people with ADEM regain mobility. However, your mom may require prolonged rehabilitation therapy to improve her mobility as her vertebral compression fractures and advanced age are complicating factors. Q2. Do you see high eosinophil counts in patients with multiple myeloma? Eosinophils are a type of white blood cell. Multiple myeloma is rarely associated with high eosinophil counts, but it has been reported a few times. In most cases it is unclear if the high eosinophil counts are directly related to the myeloma. In some cases, the high eosinophil count has been attributed to medications the patient was taking. Other causes of eosinophilia include allergies, asthma, Addison’s disease, connective tissue disorders, cirrhosis of the liver and parasitic infections. Q3. A couple of months ago, a blood test determined that my father has smoldering myeloma. He is not undergoing treatment at this time, and that worries me. Does a diagnosis of smoldering myeloma guarantee that it will develop into actual multiple myeloma one day? How long does it usually take? He is not experiencing many symptoms at this point. While it is generally believed that all patients with asymptomatic (smoldering) myeloma will eventually develop symptomatic myeloma requiring therapy, the length of time that it takes for this progression to occur is quite variable. A retrospective study of 109 patients showed that risk factors for quicker progression to the symptomatic phase of myeloma include having an IgA-type M protein, an M protein greater than 3 g/dl, and bone marrow involvement on MRI of the spine. Among patients having an M protein less than 3 g/dl and IgG-type myeloma, with a normal MRI of the spine, median time to disease progression was 79 months, compared with 23 months among those with MRI involvement. For patients with an M protein greater than 3 g/dl or IgA-type myeloma, those having a normal MRI had a median time to disease progression of 38 months, while those with MRI involvement had a median time to disease progression of 18 months. Finally, among patients with an M protein greater than 3 g/dL and IgA-type myeloma, no patient studied had a normal MRI; among those with marrow involvement, the median time to disease progression was nine months. During the asymptomatic phase of disease, I recommend follow-up by an oncologist at least every two months. To date, starting chemotherapy in the asymptomatic phase has not been shown to change the outcome of the disease. However, new clinical trials are being developed to reexamine this approach. Q4. Have other patients expressed complaints about feeling achy from head to toe and running low-grade fevers (99 to 102 degrees) every other day? My husband had stem cell transplants for multiple myeloma last September (second treatment) and is on thalidomide (200 mg per day) and prednisone (50 mg every other day). His doctor suspects it’s due to the prednisone levels dropping. It’s really compromising how he’s felt recently. All his blood tests, bone scans, X-rays and biopsies look perfect - any idea what’s causing this? This is worrisome and could be indicative of a chronic infection. Although prednisone withdrawal can cause aches, it is unusual to see the withdrawal effect on alternate day regimens like your husband’s. The fever is also surprising. Steroids can bring down high temperatures, so the days on the prednisone he would have a lower temperature than the days off. Chronic usage of these drugs can lead to lowered resistance to infections. Fungal infections especially can become a problem. A simple way to check whether the fevers and aches are drug-related is to stop the drugs for a week or two and see what happens. It is very unlikely that the myeloma would progress in the brief period he’s off the medications. Q5. How long does the swelling from thalidomide and dexamethasone last? My wife’s swelling has been so bad that her heels split open. Swelling or edema from the thalidomide, and particularly dexamethasone, will probably continue as long as she is on the drugs. Edema can be reduced by making sure the legs are slightly elevated when your wife is sitting or in bed. This maneuver helps reduce edema by returning fluid to the heart. Also, wearing tight-fitting hose (provided by her doctor) can also help alleviate the edema. Q6. My husband was diagnosed with stage I multiple myeloma, light chain disease in April 2005. [Medical editor’s note: A complete antibody molecule is made of both “heavy chains” and “light chains.” If the malignant myeloma cells produce only the light chain part of the antibody, the patient has “light chain disease.”] His numbers were at a plateau for over a year. They are starting to creep up with his M-proteins spilling into his urine . His doctor now wants to start him on thalidomide and dexamethasone induction therapy, leading him into a stem cell transplant within a few months. Is that usually the protocol, and what can I expect from the thal-dex regimen? Also, what is the usual outcome of a stem cell transplant? Thank you. Thal-dex is one of the options for the start of therapy. I usually like to use dexamethasone alone and then add the thalidomide if needed. Transplant therapy is safe, with a smaller than 2 percent chance of the patient dying of complications from the therapy in good medical centers. The response rates can be as good as 60 to 80 percent, with complete response rates ranging from 20 percent up to 40 percent. The average duration the response lasts is 2.5 years. Q7. How has Velcade impacted multiple myeloma? What has been the result of the trials with Velcade? What effect does Velcade have for patients with severe chromosome abnormalities? With deletion 13? For which patients does Velcade work the best? Velcade (bortezomib) kills myeloma cells by a different mechanism than any other drug available to treat myeloma. It can either be used by itself, or in combination with other drugs to treat myeloma. When given together with dexamethasone, 88 percent of patients who had not previously received treatment for myeloma achieved a partial or complete remission of their disease. In one study of Velcade versus dexamethasone in people with relapsed myeloma, patients treated with Velcade had a comparable rate of response and length of survival whether or not deletion of chromosome 13 was present. (Deletion of chromosome 13 is a genetic abnormality associated with a more aggressive form of disease.) In comparison, patients treated with dexamethasone who had deletion 13 had a shorter length of survival than patients without deletion 13. This suggests that Velcade may help to overcome the adverse effect of having deletion 13, but more data is needed to confirm this. We do not yet know which patients are most likely to respond to Velcade. Q8. I have been taking thalidomide for one year and now have abdominal cramping, diarrhea and tremendous gas, especially when I eat. I think I have clostridium difficile colitis, but could it just be a side effect of the thalidomide? If you have been on antibiotics recently, you should certainly be checked for clostridium difficile colitis. Though thalidomide use has been associated with diarrhea, it is unusual that you are developing such symptoms now, after you have been on the drug without these problems for one year. You should discuss these symptoms with your doctor as soon as possible. Q9. My 51-year-old husband has multiple myeloma, which is “aggressive” according to his doctor. It reappeared as tumors in two vertebrae. He has been on thalidomide [Thalomid] and dexamethasone for four months, along with Zometa once monthly. An autologous stem cell transplant has been mentioned as a possibility down the road. He is in a lot of pain, and he has several compression fractures in his back and a lot of weakness in his legs and back. He takes oxycodone [Percolone]. What else can be done for his pain and this disease? Myeloma can become a very painful disease especially with spine involvement and fractures. While pain medicines such as oxycodone are excellent, many individuals require further non-medicine measures. Two such possibilities to discuss with your oncologist are kyphoplasty and vertebroplasty. Both are procedures aimed at replacing height lost within vertebrae by the compression fractures. Both techniques are safe and in small studies have been reported to be excellent for management of myeloma pain. Overall, given your husband’s young age, moving toward a transplant seems wise. Q10. Is multiple myeloma, by the nature of the disease, considered to be metastatic? If not, how do you determine if your myeloma has metastasized? We as oncologists don’t typically apply the word “metastatic” to multiple myeloma. Myeloma is a disease of bone marrow and blood cells that can diffusely affect many different bones as well as some organs like the kidney. The best way to identify the extent of bone disease is with a skeletal survey - a series of X-rays of most of the bones in the body. There are also blood tests which your doctor will obtain to assess the amount of cancer cells in the body, but those tests will not tell you where the disease is - only an approximation of how much there is. One final word on this - if you feel that you don’t know enough about the stage or extent of your myeloma, it’s wise to ask your doctor for a clearer explanation. Sometimes doctors don’t realize that patients don’t have all of the information they need. Q11. My mother-in-law’s counts are up. The latest M-protein numbers are 2.2. Previously, I believe they were 1.8 to 1.9. What range is expected? She has responded well to thalidomide but has come off the treatment recently due to some complications (swelling). Consequently, I don’t believe the count increase is unexpected. I also don’t know what “good” or “bad” counts are. Any help would be appreciated. There is no absolute number separating good and bad disease. The decision to treat is made on whether the disease is harming the patient (such as bone or kidney damage, anemia, or frequent infections). Also, some fluctuations can be expected month to month with the labs. Generally, we should respond to a clear trend and not to just one or two readings. Q12. My dad has been diagnosed with multiple myeloma that has possibly metastasized, based on MRI and bone scan. He is going through other tests like PET scan and bone marrow test. My dad is 64, and he was vegetarian for almost all his life and is very slim. Can you please provide some thoughts on his condition, including possible lifespan? Also, is more protein going to help him? Is the amount of protein in his diet important? While multiple myeloma is not a curable disease, it is a treatable disease, and in the past eight to 10 years several new, effective drugs and drug combinations have become available to treat it. It is difficult to speculate on the lifespan of any one patient, but there is an International Staging System (ISS) for multiple myeloma which may give you a general idea of your father’s prognosis. The ISS relies on two blood tests, the albumin and the beta-2 microglobulin. If the albumin is greater than or equal to 3.5, and the beta-2 microglobulin is less than 3.5, this is considered stage I myeloma. If the beta-2 microglobulin exceeds 5.5, this is considered stage III myeloma. Patients who do not meet criteria for stages I or III are considered to have stage II disease. In a study of 10,750 patients with previously untreated symptomatic myeloma, the median survival of patients with stage I disease was 62 months (using the ISS). For those with stage II disease, it was 44 months. And for those with stage III disease, it was 29 months. Please remember that these are median values, and may not reflect your father’s life expectancy. (The median is the number, within a set of numbers, where half of the values are greater than it and half of the values are below it. For example, if the median survival for stage I disease was 62 months, then half the people survived more than 62 months and half less than 62 months.) If your father wishes to know his ISS stage, his oncologist should be able to provide him with the relevant lab results. Your father should certainly maintain a healthy, well-balanced diet, but there is no specific diet or specific protein recommendations for people who have multiple myeloma. Q13. What kind of maintenance therapy is recommended for a myeloma patient in complete remission with no detectable sign of disease following four months of Thalomid (thalidomide)/dexamethasone therapy? Your question is a complex one and will probably get many different answers from different oncologists. Prior to initiating treatment, your oncologist will probably have performed some tests on your blood to determine how aggressive or “poor risk” your myeloma was. If there is a high likelihood of aggressive disease coming back, you may want to consider aggressive “maintenance” treatment. Maintenance can include new chemo drugs or possibly even a stem cell transplant. If your disease is predicted to stay away for some time, then avoidance of toxic and aggressive therapy is very reasonable. Either way, this question should be discussed in detail with your doctor(s). Q14. I was diagnosed with smoldering myeloma in 2005. My gamma levels have stayed around 1.6. My last two visits it has jumped up to 2.0. My X-rays are fairly okay – no lesions, just some degeneration. I don’t know if that is normal wear and tear or part of myeloma. My concern is that I have started having bigeminy and trigeminy throughout the day. Some days are worse than others. I am also staying real tired when it happens. Is this something that I need to discuss with my hematologist? Yes. You should bring these episodes of abnormal heart rhythms (bigeminy and trigeminy are two different patterns of abnormal heartbeats) to your hematologist’s attention as well as to the attention a cardiologist. Your hematologist may consider testing you for a disease called AL amyloidosis, which can sometimes be seen together with multiple myeloma. Like myeloma, AL amyloidosis is caused by the presence of an abnormal clone of a type of white blood cell, called a plasma cell, which has an antibody associated with it. The dysfunctional antibodies associated with these abnormal plasma cells form sheets of protein that can deposit into organs and nerves and interfere with their function. People who have amyloid deposition in the heart can have heart rhythm disturbances or symptoms of heart failure such as shortness of breath or leg/ankle swelling. Amyloid deposition is just one of several reasons that you may be experiencing arrhythmia. A cardiologist will be able to look for other explanations of these episodes if you have no evidence of amyloid deposition in the heart. Q15. How Does Myeloma Cause Death? My wife was diagnosed in November 2005 with stage III multiple myeloma (kidney distress and multiple lesions), suffered some kidney damage, has undergone two stem cell transplants and is in full remission since the second transplant in July 2006. She’s continuing on dexamethasone and thalidomide and follow-up visits. If the multiple myeloma in fact ends her life at some time in the future, how does that usually occur? What usually causes death? Kidney destruction or what? Candid answer please. I am glad to hear that your wife is doing so well. The most common cause of death related to multiple myeloma is infection, with pneumonia being the most common fatal infection. Other common causes of death are bleeding (from low platelet counts), complications of bone fractures, kidney failure, and blood clots in the lungs. Learn more in the Everyday Health Multiple Myeloma Center.
