One of the many ongoing challenges that we face at the International Myeloma Foundation is to try to strike a balance between "information deficit" and "information overload." Founded on the principle that "knowledge is power," the IMF strives to make information about multiple myeloma available to all who seek it, but sometimes patients, especially newly diagnosed patients, are so overwhelmed with the quantity of information they have to process that it can cloud their judgment when it comes to making decisions that affect their lives.
Another issue we face is making sure that the right information gets into the right hands. I have always recommended that myeloma patients seek out the advice of a myeloma specialist whenever possible, but in some cases it is not geographically or financially feasible for patients to visit with a myeloma specialist more than once a year.
Dr. Morie Gertz once pointed out that it is much easier for a myeloma doctor to know everything about one form of cancer than it is for a general hematologist/oncologist to learn everything about every form of cancer. Sometimes patients can receive erroneous or incomplete information from a trusted doctor, simply because he or she is not up-to-date on the latest news in the world of treating myeloma.
Keeping in mind the many questions that I have heard from patients, as well as those questions received on the Hotline over the past year, I have compiled a list of ten recommendations for patients as they navigate through the new year.
Recommendations for Challenging Times:
For additonal information on some of the terminology used above, or to gain a better understanding of myeloma as a whole, I invite you to visit the IMF's 10 Steps for Better Care (tm) diagnostic tool at 10steps.myeloma.org.
- Stay informed. When new information become available, the IMF website (www.myeloma.org) and the toll-free Hotline (800-452-CURE) are the first to receive updates. Visit the website frequently and check the "New and Noteworthy" section for the latest information, then call the Hotline for any clarification or to find out how the news might affect your personal situation.
- Talk to other patients. The IMF supports a network of nearly 150 support groups worldwide. Getting support from your fellow patients is crucial for your continued success in combating the psychological effects of living with cancer. When surrounded by people who, like you, are living with myeloma, a support group provides powerful evidence that you are not alone. The IMF stays in close contact with all our support group leaders to get the word out about clinical trials, educational events, and new IMF publications.
- Get involved. One of the most difficult challenges for myeloma patients in the United States is the high cost of some treatments. Patient advocates in several states have successfully provided oral testimony to enable passage of oral drug parity laws in their respective states. You can get involved at the state and/or federal level to increase support for legislation that will promote equal access to drugs for all cancer patients.
- Keep in mind that remission can lead to cure. Always remember that keeping myeloma in remission (chronic disease control) over many years can provide long-term survival with excellent quality of life, and new drugs are coming along all the time.
- Talk to your doctor. Don't be afraid to ask your doctor about tests needed to monitor the status of your myeloma. Checking the M-spike level using serum protein electrophoresis (SPEP) and/or urine protein electrophoresis (UPEP) is essential to know the status of your myeloma. Patients who do not secrete m-protein that can be measured via SPEP or UPEP may be able to take advantage of the serum free light chain assay, or Freelite® test.
- Don't jump to conclusions. Be aware that small changes in the M-spike do not necessarily mean relapse or loss of remission. Recheck the numbers before jumping to conclusions. Before changing treatment, we need to know that the myeloma is truly active and is creating new problems, as evidenced by "CRAB" criteria.
- Take baby steps. If there is concern about relapse, before changing completely to a new treatment, consider making adjustments to the dose or schedule of your current regimen. The idea is to get the most mileage out of each treatment regimen over the years.
- Pay attention to side effects. It is very important to speak up about treatment side effects, especially peripheral neuropathy, or damage to the nerves in the hands and feet. Changes can be made without necessarily reducing the benefit of treatment. For example, with bortezomib (Velcade®), we now know that 1 day per week rather than two, and/or subcutaneous (SQ) versus IV treatment, can significantly reduce neuropathy without loss of efficacy.
- Consider a transplant. If you are younger and/or in excellent general health, the current data still supports autologous transplantation (ASCT) as part of the recommended primary treatment. There is evidence that novel therapies plus transplant can produce better outcomes.
- Use the IMF. If treatment is failing and you need new options, please contact the IMF. We are here to help identify backup options and clinical trials that can provide access to new drugs.