Multiple myeloma is a blood cancer. Other better-known blood cancers are leukemia and lymphoma. It is called “multiple” because this cancer typically causes problems in more than one place in the body. The occurrence of myeloma is on the rise in the United States. It currently has no known cure, but it is usually slow-growing and can be treated. Myeloma has long been known as a disease of the elderly, but in recent years more and more younger people are being diagnosed with this cancer. The cause of myeloma is not known, but it is thought that certain industrial products, farm fertilizers and pesticides, and radiation might all be contributing factors. There is no known hereditary factor associated with myeloma, although the occurrence of myeloma within families is being studied. Multiple myeloma is slightly more likely in men than in women, and it is more common in African-Americans than in Caucasians. Common problems seen at and prior to diagnosis are tiredness, weakness, infections, bone pain, and fractures. In multiple myeloma, as with any cancer, there has been a mutation of a certain cell. From that single mutated cell a great many identical cells have grown. In the case of myeloma, the particular cell that had the mutation is known as a “plasma cell.” In every human body there are many health plasma cells. In the body of someone with myeloma there are both healthy plasma cells and the mutated plasma cells. The mutated (malignant) plasma cells, or myeloma cells, continuously multiply. Large numbers of myeloma cells form tumors. Tumors of myeloma cells can grow inside bones or on the outside of bones . Good blood cells are crowded out and the bones themselves are often damaged, leading to fractures. All of the myeloma cells are identical and they are all deformed. T hey serve no useful purpose because they are defective. Normal plasma cells automatically die after a period of time, but the myeloma cells have lost the ability to die. Your immune system tries to kill them but is not able to get the job done. Myeloma cells are malignant plasma cells, and the purpose of plasma cells is to pump out vast quantities of a protein called immunoglobulin. In the case of the myeloma cells, the protein that is created is defective, just as the myeloma cell itself is defective. Almost all cases of myeloma (99%) have the additional problem of an excess of this defective protein, which is also called myeloma protein, or m-protein. Besides the problems that the myeloma cells can cause, the myeloma protein may cause further problems that have to be addressed. But first we need to understand a few things about the myeloma protein. Good plasma cells create a va riety of these proteins, depending on the reason why the plasma cell was created. In other words, the bodily invader caused a particular type of plasma cell to be created. Therefore, medical people refer to your type of myeloma according to the kind of protein it creates. One way to measure the extent of your disease is to measure the amount of myeloma in your bone marrow. Another, and simpler, test is to measure the amount of myeloma protein that you have in your blood and urine. Now, about the problems that the myeloma protein may cause. In order to get rid of the excessive protein that is being created by the myeloma cells, the kidneys must work very hard to do the job. In fact, the kidneys may become overwhelmed and the myeloma patient may develop kidney problems or even kidney failure. Great care must be taken by your oncologist and you to prevent this from happening. Your job is to drink plenty of water every day. Another problem that may result from the excess protein is, in rare cases, thickening of the blood, leading to stress on the heart and other organs. We’ve talked about the myeloma cells and the protein that they secrete. But the myeloma cell also secretes other molecules that have a complex interaction with the many cells in the bone marrow environment. The result is a cycle of destruction whereby the myeloma cell creates other cells that destroy bone; but the cells that destroy bone secrete substances that cause the myeloma cells to proliferate. This cycle of destruction, unless broken by treatment, may result in severe damage to your skeleton. There are three typical ways that myeloma affects a person. First, myeloma suppresses the immune system, which leaves the person more likely to get sinus, respiratory, and other infections. A suppressed immune system may mean anemia (weakness, tiredness) and low platelets (slowness to heal). Second, myeloma affects the skeleton. Lesions may lead to compression fractures in the spine, broken ribs, arms, shoulders, or legs. Bone pain is often a side effect of the disease. Third, the myeloma protein may affect the kidneys to a significant degree. It is not uncommon for patients to have kidney damage and even kidney failure at diagnosis. Multiple myeloma is an incurable (at this date), but very treatable disease. For all of the years until very recently, there were only a few treatments available to a person with myeloma. As a matter of fact, the “old” treatment of melphalan and prednisone wasn’t even introduced until the 1960’s. Even as recently as 1994 [when this author was diagnosed], there were only a handful of treatment options. In the ten years since then, many effective treatments have been in troduced, including Aredia and Zometa, thalidomide, and Velcade. The art and science of the transplant has been advanced greatly and new, innovative methods of subjecting myeloma cells to lethal radiation have been made available. When a person is diagnosed with myeloma, he [or she - I will use the masculine pronoun for patient and doctor, but that’s only for journalistic convenience] may be in serious physical condition. There may be painful fractures, seriously elevated calcium, kidney damage, depressed red, white and platelet cells, and almost always an excess of protein in either the blood or urine. In such a case, the newly diagnosed MMer must have treatment in order to bring him out of the crisis. Such treatment may also include a strong anti-myeloma agent in order to get the source of those problems under control. Such a patient has no choice but to put himself into the hands of medical people with few or no questions. Time, in such a case, is of the essence. Other newly diagnosed MMers may be more fortunate. They are the ones who are diagnosed fairly early in the disease progression and they may have few, if any, serious problems besides the myeloma itself. Such people have some breathing room before undertaking treatments that they’ve not yet had a chance to investigate. Even the patient who is in crisis when diagnosed will have that breathing room once his condition has been stabilized. There are three stages of treatment during the patient’s journey with myeloma: crisis Intervention (when necessary) in order to stabilize him, short-term treatment in order to get the myeloma into remission, and long-term treatment in the event of future relapses. The MMer must have an oncologist he trusts and with whom he feels comfortable. If the oncologist and patient are not a good fit, a change should be considered. Remember, it’s your life that’s at stake! Every oncologist has a “treatment philosophy” for myeloma. Some are conservative, some aggressive, some have good bedside manner, others want no questions or interference from the patient and caregiver ... there are all kinds. You must find someone who fits with you. Quality of life should be as important an issue as killing myeloma cells. If it is, then don’t agree to treatments that will ruin your life along with the myeloma, unless the oncologist can convince you that there is no other choice. There are almost always other options. You must learn to communicate with your oncologist. It doesn’t matter whether it’s you or your caregiver, a family member or a friend, but somebody must ask the hard questions and make sure that your wishes are considered. A second opinion is very helpful and might even be considered essential. The best second opinion is from a myeloma specialist. A myeloma specialist is someone who treats only myeloma (not 100+ cancers) and usually does both clinical and research work with myeloma. No ordinary oncologist or hematologist has the time or energy to keep up with the rapid developments in the field of myeloma. The myeloma specialist can give you the assurance that your oncologist in taking you in the right direction. He can also talk one-on-one with your oncologist, giving him the benefit of his specialized insight into your treatment. Some treatments are not yet approved for general clinical use and are in clinical trial. Remember that those trials have both an upside and a downside to them. They are very important for future patients and for the medical people. They may or may not benefit you. They are experimental and their value has yet to be proven. On the upside, they may be free and you may only be able to get that treatment by being in the clinical trial. Your insurance coverage may override all other considerations when it comes to who treats you and what treatment you may have. Make sure that you understand what coverage you have and what recourse you have for appealing any insurance company decisions. Lastly, remember that no treatment is without some risk in terms of side effects or even death. Most treatments are toxic or otherwise harmful to all the good cells in your body. You may have to accept that risk, but make sure you understand exactly why you must take that risk and for how long.
Posted on: Thu, 05 Sep 2013 12:32:51 +0000