Pat’s Place: Communication With Your Physician Is Key—Patient Suggestions And Input Are Important

This week I’d like to discuss two questions that patients often have: Is it OK to suggest a change in a treatment plan due to side effects, trends in numbers, or having learned about a better therapy regimen? If a patient’s doctor suggests a treatment option that they don’t really like, should the patient suggest another one?

The answer to both questions is YES!

Treating multiple myeloma is definitely a work in progress. There’s no one right answer. Setting goals and having a treatment plan is important. But we also need to make changes based on how we respond to treatment.

As myeloma patients, sometimes we need to work through minor side effects in order to continue our treatments—especially if they are working. But sometimes side effects become more than an inconvenience.

Examples of this might be red or white blood cell counts that endanger our health. Or serious peripheral neuropathy that is hurting our ability to function day to day.

Last night I received a call from a fellow multiple myeloma patient named Helen. Helen is a strong, energetic woman in her 80s who has just started treatment.

Helen is also diabetic. The common treatment of Revlimid (lenalidomide) and dexamethasone (Decadron) is giving her a lot of trouble. After one month’s cycle, she is experiencing wild swings in her blood sugar levels (probably from the dex) and feels tingling in her lips and jaw.

Helen now barely has the energy to walk across the room. Why? I’m guessing her low red blood cell counts are to blame—she needed two infusions of plasma over the weekend.

Helen is a perfect example of someone who should start an open and informed dialogue with her oncologist about her condition and treatment plan.

Despite her age, Helen is taking the standard dose of Revlimid (25mg), 21 days on with 7 days to rest—and dex (40 mg once a week). That’s a lot of anti-myeloma firepower to pump into an older woman!

But I’m sure her specialist at Mayo Clinic has a plan. I suggested she ask him to share the details of the plan with her. How long was he planning to keep her on 25 mg of Revlimid? Could she drop the dex soon if her myeloma was responding well to treatment? How soon could he drop the dose and/or frequency of Revlimid if she was responding?

Helen also suffers from diabetic peripheral neuropathy. I’m guessing that her physician didn’t want to start her on Velcade (bortezomib), since it has a reputation for sometimes causing peripheral neuropathy.

But it might be worth asking her doctor whether there are alternatives to Revlimid and dexamethasone.

Maybe it would be worth trying Velcade, since Revlimid might be too hard on her blood counts. Or maybe a combination approach, using lower doses of each of these novel therapy agents might work best.

A combination of melphalan (Alkeran) and prednisone often works well in older patients, too.

There is nothing wrong with discussing treatment plans you learn about online or from other patients in a support group.

Your doctor should be able to explain the pros and cons of each of the regimens in your particular case. And sadly, not all physicians always know best—especially if he or she is a medical oncologist who doesn’t specialize in treating multiple myeloma.

Communication with your doctor and nurse is the key to your receiving the best, most comprehensive treatment available to you.

Whether by phone, email, or in person, ask questions! Learn and understand what your oncologist’s plan is—and why.

Don’t be afraid to report even subtle changes and side effects to your health care team. And try not to wait for a scheduled appointment if something is bothering you. Get on the phone, and let your doctor know!

Feel good and keep smiling! Pat