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Published on January 22, 2018

Cancer maintenance drugs are doses of hopeCancer maintenance drugs are doses of hope

Sometimes with cancer it’s hard to know which is worse, the disease or the treatment.

So, if you’re like me, you breathed a sigh of relief when chemotherapy and radiation were behind you.

And then, it turns out, treatment isn’t over.

For many cancers, particularly metastatic breast and lung tumors, metastatic colon cancer and some hematologic cancers such as multiple myeloma, treatment can continue for years with “maintenance” drugs or, in the case of some non-metastatic breast cancers like mine, endocrine therapies that suppress the estrogen that can feed tumors.

While patients might find it dispiriting, it’s actually a good thing, says Jennifer Crook, MD a Cape Cod Healthcare oncologist and hematologist. It means cancer is being treated as a chronic disease, rather than a fatal one. For example, metastatic lung cancer, which five years ago might have had a projected survival rate of one year, can now sometimes be controlled for years with regular infusions of immunotherapy drugs. Unlike the traditional cytotoxic chemotherapy drugs, which kill any fast-growing cells (including hair and nail cells), these drugs use the body’s own immune systems to target cancer cells.

“They’re extremely well tolerated because they aren’t chemotherapy per se,” Dr. Crook said. “They work through a different avenue. Patients who respond to the immunotherapy drugs will often be able to stay on them for years. It really is changing how we think about a lot of these diseases.”

Maintenance drugs are a dose of hope, she said.

“Being diagnosed with cancer, even with a metastatic cancer, does not necessarily mean that their life is going to be extremely short,” she said. “It might be an incurable disease, but the hope is that it will be a disease they can live with for a good long time.”

Cancer cells are devilishly smart. They become resistant to drugs, just as bacteria become resistant to antibiotics. But researchers have been working to stay ahead of some cancers, such as metastatic breast cancer.

“Breast cancer is one of the first diseases in which we started to see real improvements in survival for women, even with metastatic disease, because there are so many steps in the chain of therapy options,” Dr. Crook said. “If the response to treatment No. 1 lasts for X amount of time, and then when it stops working you move to treatment No. 2 and then to treatment No. 3, cumulatively, it can add up to a lot of time. It’s not unusual to meet a woman who’s on her sixth or seventh different type of treatment.”

The specific type of drug will vary from patient to patient and disease to disease, Dr. Crook said.

“Some maintenance regimens consist of actual chemotherapy drugs, but are medications that are generally well-tolerated,” she said. “You’re not keeping (patients) on heavy hitters for a long-period of time.”

Most metastatic patients will be offered maintenance therapy, she said. Then, it’s up to the doctor and patient to walk what she calls the “fine line” of improving quantity of life without taking too much away from the quality of life. Some adverse side effects that might be tolerable in the short term are not acceptable over the long haul. Patients are followed closely with scans and lab tests, Dr. Crook said.

“It’s tough,” Dr. Crook said. “For somebody who’s not curable, who’s looking at being on drugs for the rest of their life, then you’re less willing to have them on a treatment that makes them feel bad in any way, whether it’s being nauseated, or weak, or tired, or dizzy.”

Patients may be told about maintenance treatments when they are first diagnosed but often can’t process the information when they are still reeling from an initial cancer diagnosis. If your oncologist does talk to you about long-term treatment, Dr. Crook suggests some questions you can ask:

How will the drug be administered and on what schedule?

Many maintenance drugs are given by infusion, requiring a weekly or monthly trip to an infusion center. The schedule will be more important to some people than others, she said.

“For example, if you’re working or if you live on the Vineyard or Nantucket or Provincetown, how frequently you have to come to your treatment is going to be much more important to you than if you live in Hyannis and you’re retired.”

There are more and more oral treatments that can be taken at home, Dr. Crook said, but those still require regular check-ins with an oncologist.

What are the short- and long-term side effects?

You’ll probably remember to ask, “How am I going to feel each time I get a treatment?” But it’s also important to ask, “What are the ramifications of being on this long-term?” Some endocrine therapy drugs, the aromatase inhibitors, for example, have an effect on bone density that needs to be monitored. Other drugs may affect the heart.

There are two classes of side effects doctors want patients to know about up front: “common” and “serious,” Dr. Crook said. The serious ones are usually uncommon but patients should be aware of them so symptoms aren’t ignored, she said. Doctors will also screen patients during check-ups for side effects that some of us might consider unimportant or part of aging.

Can I take a medication vacation?

As Dr. Crook said, it can be discouraging for patients to hear that that they will be on a “short leash” of IV treatment for several years, even it if does promote a longer life. But if a patient has a good scan or their cancer-related symptoms are under control, doctors may approve a break from long-term treatment – and side effects.

“I just agreed on a treatment break for a woman because one of her children was getting married,” Dr. Crook said. “She wanted some time to get her energy back and travel and do some things. We give breaks to people because they want to go on a cruise or they need a vacation. Sometimes we just give breaks to people because they need to be away from us for a couple of months.”

And, she said, Cape Cod Healthcare, is experienced in working with Florida facilities to coordinate infusion treatments for snowbirds.

Can I mix long-term and complementary therapies?

You should feel safe being open with your doctor about any complementary or alternative therapies, Dr. Crook said.  It’s important that your oncologist know about anything you are doing or taking – vitamins and supplements, for example – so providers can be on the watch for interactions.

“Trust that most of us are going to support you in what you want to do,” she said. “We’ve definitely become more open-minded.”