May 19, 2003
Multiple Myeloma - There's Hope!
Those terrible first days
Perhaps you've just heard the three most dreaded words (when used together) in the English language, "You have cancer". Worse yet, perhaps you were told you have Multiple Myeloma (MM), a disease you likely had never heard of, since it represents only 1% of the total cancer cases in the U.S., but 2% of the cancer deaths. You may have had the disease for several months (or years) but it escaped a proper diagnosis. Many doctors and oncologists have never treated an MM case, or have very few MM patients, thus it is fair to say that many will not be up on the latest treatments or clinical trials. They may not even be that knowledgeable about what factors are important to track related to MM.
Multiple Myeloma is a malignant cancer of the plasma cell, which is a type of white blood cell found in bone marrow and many tissues of the body. Normal plasma cells fight infections, but malignant plasma cells lose this ability and crowd out other infection fighting cells. As the cancer grows, it destroys normal bone tissue, causing pain and crowding out normal cell production. It is considered a bone marrow/blood cancer and is closely related to leukemia and lymphoma.
The old statistics indicated a typical lifespan following diagnosis of three to five years, although the new treatments are significantly extending this period. An acquaintance of mine lived 19 years with the disease, in relatively good health, so don't ever fall victim to statistics when it comes to Multiple Myeloma. For better or worse, you may be hit by a beer truck and die long before MM causes your demise!
My wife and I were totally devastated when I was diagnosed on 9/26/01 (you likely WILL remember the date of your diagnosis!) at the age of 54. We grieved and cried a lot, and I think this is normal and good to do, rather than keeping the emotions of such a scary thing bottled up inside you. We had never heard of the disease and had no idea of what to expect.
The oncologist would not give us a likely remaining lifespan, and that was a very good thing. You see, the disease is so individual, that some (like Ann Landers) might live only 6 months from diagnosis if the disease is very aggressive, and others like my friend in San Diego, might live a couple of decades or more. Thus, unless the doctor tells you that you are in the end stages of MM, it is otherwise pointless to ask how long you have, because no one really knows. I EXPECT to live at least another 20 years, and I encourage you to think the same way - attitude is VERY important in fighting this nasty disease. And the longer you survive, the better chance of getting some of the newer treatments that are likely to extend your life and increase your quality of life.
Help is on the way!
Importantly, the research and clinical trials and new drugs currently going on and being released related to MM are so extensive and encouraging that many myelomics (a term we coined ourselves) may very well find that this turns out to be a chronic disease (like diabetes) rather than a terminal disease. New drugs like Revimid, Velcade (aka PS 341) and Genasense are wrapping up clinical trials and will likely be available later in 2003 or sometime in 2004. A company called Xcyte Therapies in the Seattle, WA area has developed a very promising treatment that must still undergo clinical trials, but appears to hold great promise. Existing treatment techniques of radiation (which generally will relieve much of the pain) and chemotherapy are usually quite effective in reversing the advance of the disease and holding it at bay for extended periods of time. However, as of this writing, the disease is technically still considered terminal (but highly treatable) since there is no known cure yet.
Ok, so what should you expect as time goes on regarding the treatment of this disease and what resources are available to help you along the way?
First, the resources. Two excellent organizations exist to provide a wealth of information about MM. They are the International Myeloma Foundation (IMF) at www.myeloma.org and the Multiple Myeloma Research Foundation (MMRF) at www.multiplemyeloma.org. These are both non-profit organizations dedicated exclusively to helping Multiple Myeloma patients and their caregivers as well as finding the best treatments and ultimately a cure for MM. These are complementary organizations and both have a board of directors comprised of some of the most respected Multiple Myeloma experts in the world. They provide excellent publications to educate you about the disease, and publish newsletters to keep you updated.
There is also a listserv email group (like a bulletin board) that features dialog among patients, caregivers and medical professionals on every imaginable aspect of MM. The one I use daily is at www.acor.org/myeloma.html. If you click on that link, you can sign up. You don't have to partake in the discussions, you can just lurk and learn a lot. Or you can ask any question on your mind, and will likely get a one or more responses within a day or two (sometimes within hours).
Financial and legal issues are always a concern. For excellent help at no cost, contact the Patient Advocate Foundation at www.patientadvocate.org. You should also contact the Social Security office right away. There is a VERY high likelihood you will qualify for permanent social security disability as a result of your diagnosis. It is listed as one of the diseases wherein the patient is nearly automatically granted disability status. To learn how to apply, go to www.severe.net/howto.html. DO NOT put this off, there is a five month waiting period following onset of the disease and the process will take a bit of your time in completing forms and answering questions and submitting doctor's statements and info in your medical charts to verify your condition. If you are a veteran, and were in Vietnam during the conflict, or in Korea during 1968-69, there is a good chance you qualify for monetary and excellent medical benefits (an enhanced HMO plan) at no cost from the Veterans Administration. To learn more, contact the Disabled American Veterans at www.dav.com. Be sure to tell them you are inquiring about benefits related to possible exposure to Agent Orange.
What might I experience with MM?
I wish I could tell you it will be a walk in the park. For a few, it is. For others, it can be terribly difficult and very depressing. You may find yourself bedridden for several weeks or months and have to depend on someone to bring you food, medications, etc. I strongly suggest that you (and your caregiver, assuming you have one) request medication for depression and anxiety, as these are VERY common among patients and caregivers. Celexa and Ativan have worked well for me for these two conditions. Without them, you can become very depressed, anxious, and frankly, difficult to deal with. Don't feel you are lesser for needing these drugs - in fact, you will likely be much better off and better able to deal with the disease with you mind a bit more at ease. Don't overlook the power of prayer, meditation, and good nutrition. Each can be very powerful in fighting MM.
Common treatment regimens for MM are radiation to the site (or sites) to shrink the tumor(s) and relieve the pain. Then chemotherapy - typically something called VAD. This is a combination of drugs that is infused continuously for 96 hours once a month, usually for three to six months. It can cause nausea, vomiting, diarrhea, loss of appetite and a host of other nasty symptoms. The good news is that it is not nearly as bad as it was 10 years ago, and there are many drugs they can give you to counteract many of the side effects of the chemo. Once you are stabilized, you will likely go on a maintenance treatment, frequently Thalidomide and a steroid like dexamethasone (dex) or prednisone. These drugs can cause a lot of problems including blurred vision, cataracts, bloating, nausea, neuropathy, etc. You should discuss the side effects with your oncologist in advance of any treatment, and read up on it through the IMF, the MMRF, or just researching it on the Internet. Just go to www.google.com and type in whatever you want to know about, and likely you will get a good number of listings to inform you. Remember though, your primary goal is to quell the disease, so experiencing side effects is unfortunately just a necessary evil part of your fight.
As you begin to regain some strength, consider very light exercise programs like gentle yoga or Pilates for beginners. These will generally not tax your spine or back too much (if you tell the instructor what your disease is) and should begin to bring some flexibility back to your body. Always consult with your doctor before beginning anything like this on your own.
Many people find it helpful to join an MM support group. The IMF can give you contact information on the group nearest you. These are typically half patients and half caregivers and provide very specific information on MM, and are very empathetic and non-judgmental.
For many folks, enough strength and pain relief is experienced within six to twelve months to begin to become somewhat self-sufficient. Some never are impacted so severely, while others are permanently reliant on others for their needs. Since this is such an individual disease, it is hard to tell. I'd say that the majority of folks are either disabled but able to handle basic everyday tasks or able to continue working.
The more you learn about the disease and the effects of the treatments, the more you can be a strong participant in your healing. The sooner you learn, the better. And if your doctor does not have a lot of experience with MM, ask him/her to refer you to an MM specialist for a second opinion. Your doctor should be pleased to do this, and if not, you should find another oncologist quickly. With the rareness of this disease, you cannot afford to have an inexperienced physician heading up your treatment plan. For a list of MM experts and facilities, contact either the IMF or the MMRF.
There is an incredible amount of information available regarding this rare disease. It can be overwhelming. Be sure to take time to let your mind rest and stop thinking about the disease. However, you may be surprised that after you spend some time researching the topic, you will be bringing new information to your oncologist, as he/she may be too busy to stay current on the latest developments. The more you take a proactive role and maintain a positive attitude, the faster and more extensive your recovery is likely to be.
Remember, you are NOT dying of cancer, you are simply living with cancer. While your life will most definitely be different from before, many of us lead very full lives for many years with a fairly high quality of life. Take heart and press on - you'll likely do very well!