Deciding about treatment is the most important initial decision. Baseline testing, staging, and prognostic classification are essential. Treatment is recommended for active or symptomatic myeloma. The urgency of treatment depends upon the exact problems faced by an individual patient.
Treatment decisions are critically important to the survival and quality of life of the myeloma patient. To make an informed decision, the patient needs to have the facts. Some patients want to discuss all aspects of their situation, treatment, and prognosis. Others just want to know what to do next. Most doctors are sensitive to this and will vary their approach based on what they perceive to be the patient’s wishes. We encourage patients to be explicit about how deeply they want to get into the details of the treatment decision. And, no matter how comfortable the patient feels with a doctor, it is generally good practice to get more than one opinion before proceeding.
INITIAL OR FRONTLINE THERAPY
It is important to set aside plenty of time to discuss the options with your hematologist or hematologist/oncologist. In addition to the baseline test results, you must consider:
- How much impact does the myeloma have on day-to-day functioning?
- Will the I be able to work? Are plans in place to be off work as needed to undertake treatment?
- Your age. Do you have any other medical problems?
- Can you tolerate chemotherapy?
- Is high-dose chemotherapy with stem cell transplant an option?
- How well and how rapidly you respond to treatment varies from patient to patient.
- All treatment decisions do not need to be made on “Day 1.”
- It is generally best to keep the door open for stem cell transplantation if you feel it can be a future option for you.
- Although frontline clinical trials are available, you have to be completely comfortable that you will be randomly assigned to one treatment versus another. You may become “locked in” to future randomization and treatments. Make sure you understand the full scope of the protocol.
- If one treatment does not work, this does not mean that another treatment cannot work extremely well and give an excellent remission.
Treatments are available to alleviate the physical and emotional impact of the disease. Early use of supportive care measures is just as important as initiating frontline therapy.
Beyond the management of specific symptoms, a whole range of supportive measures is critically important:
- Physical activity – Patients should check with their physicians to clarify if full physical activity is feasible or if adjustments need to be made because of bone disease and particular areas of bone damage. Usually, some physical activity such as planned walking or swimming, flexibility and strengthening exercises, and/or a personalized yoga program, can be set up.
- Diet – No specific diet has been developed for myeloma patients. This is an area of ongoing research. In general, “healthy diet” recommendations from other disease settings such as cardiac disease and cancer in general (e.g., breast cancer) can be utilized. Caution should be used in two areas:
- Vitamin C – High doses (i.e., >1000 mg/day) may be counter-productive in myeloma and increase the risk of kidney damage.
- Herbal and vitamin supplements – Talk to your doctor about using supplements
along with chemotherapy or other drug treatment. Drug interactions
can create medical problems.
- Mental health – Your mental health is critical as you move forward with planned treatment. Make sure you are comfortable with the treatment planned. Schedule an appointment with a mental health professional if you believe
that you might be depressed, or if others are concerned that you might be depressed.
- Regular sleep – This is very important for your immune system.
- Make adjustments – As much as possible, reduce or eliminate stress in job, family, or social situations. Management of the myeloma is the top priority until remission and/or a stable situation has been achieved.
IF FRONTLINE THERAPY IS NOT WORKING
There are numerous treatment options beyond the scope of this introductory handbook. Emerging new therapies are increasingly available and can provide major benefit.
This information was taken from the IMF Patient Handbook, part of the free IMF Info Pack. To order your copy, click here. If you have questions about the information on this page, or about any aspect of myeloma, call the IMF Hotline at (800) 452-CURE.
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