What to Expect

Thorough Evaluation

Several drugs that may benefit MDS or MPN patients have become commercially available. However, it’s still not clear exactly how and when the drugs should be used to achieve the best effect across the broad spectrum of MDS/MPN. This is why research is so important. It’s also the reason patients need to be evaluated thoroughly soon after diagnosis (or even with a suspected diagnosis) to determine where they are in the spectrum and devise an individualized long-range management plan.

Our team provides state-of-the-art evaluation, including new research tools to pinpoint your diagnosis if it is still in question, and we give you information about what medical science has to offer and how the various options should be used in your particular situation.

If you or someone you know has recently been diagnosed with myelodysplastic syndrome (MDS) or myeloproliferative disorder (also called myeloproliferative neoplasm, or MPN), here are a few points to consider:

• First, all cases of MDS and MPN are not the same. The treatment that a friend or relative received may not be the best treatment for you. You may want to read about common Treatment Options to learn more. Your health-care team can explain the available options. They can talk with you about which combination is most likely to help you.
• Don't rush into a decision about treatment. In most cases, you have time to consider your options and get a second opinion to help you decide what kind of treatment is right for you. Patients generally obtain the greatest benefit in regard to treatment possibilities if our physicians or researchers have a chance to meet with them and discuss options before any treatment is given.
• A diagnosis of a serious illness can feel overwhelming. We have an experienced, compassionate team ready to help you adjust to what’s happening. You may want to read the section on Patient Support. You may want to join a support group, or talk to a social worker or chaplain.
• You may have many questions about your condition, treatment, and what the future holds. Start writing down your questions. Each time you see your doctor, bring your current list of questions with you.
• Ask someone you trust to go with you to doctors' appointments and tests. This person can provide emotional support. A friend or family member can also help by keeping track of questions you want to ask, taking notes, and doing research on your disease and treatment options.

Your First Visit

The what, where, and what happens next of your first MDS visit at SCCA.