New drugs bring new side effects for cancer patients

No one would chide a bald chemo patient for making bad decisions about her hair.

But a stranger told one of Beth Eaby-Sandy's cancer patients - a woman whose treatment had made her skin turn bright red - that she "really should wear sunscreen."

The patient, who already felt conspicuous, was upset, said Eaby-Sandy, a nurse practitioner who works with lung cancer patients at the Hospital of the University of Pennsylvania.

The stranger was rude, no doubt, but her ignorance is understandable. As new targeted drugs and immunotherapies become more common, they are giving patients a host of side effects most of us have never heard of. There are lots of weird skin problems. Eyelashes that need trimming. Serious digestive issues.

Often touted as less toxic than chemo, the new treatments can still cause embarrassing and, occasionally, life-threatening side effects. The new drugs target specific cancer-cell mutations, but their aim is not perfect; some healthy cells are also affected.

Patients, family members, and friends should know that although the new drugs are easier to take than intravenous chemo, they create new problems that demand empathy and support.

Oncology teams that had learned how to help patients tolerate the nausea and hair loss from chemo now have to work more closely than ever with dermatologists, endocrinologists, and gastroenterologists. As with chemo, some patients must take breaks from the drugs or take lower doses.

"It's a brave new world out there," said Corey Langer, a lung cancer specialist at Penn Medicine. He's had to learn how to manage skin problems, diarrhea, and high blood pressure. "It forces you to update your skill set and stay very current."

Much of the management falls to oncology nurses such as Eaby-Sandy, who now lectures on the topic.

"Now that these drugs are approved," she said, "I feel like I'm a dermatology nurse."

On the plus side, these new therapies, which target specific mutations in tumors or stimulate the body's immune system to attack cancer, are seen as the future of cancer care. For patients who respond, they can extend life significantly.

"The benefits so far outweigh the risks," said Louis Weiner, director of the Georgetown Lombardi Comprehensive Cancer Center and an expert on immune treatments. "It's like nothing I've seen in my career."

Among other things, he is learning how to deal with pituitary malfunction caused by some new treatments. He added, though, that these new side effects - doctors call them toxicities - are occurring in patients who previously "might not have had the privilege of living long enough to get any problems."

The new treatments are usually given for advanced, aggressive cancers.

"Patients want to live and they're willing to do whatever they have to do," said Lynn Schuchter, chief of hematology/oncology at Penn Medicine. Some of her melanoma patients get 103- to 105-degree fevers from their drugs.

"I'm sometimes in daily communication with people," she said.

Massimo Cristofanilli, a breast-cancer expert at Thomas Jefferson University Hospital, said many patients were initially thrilled that they could just take a pill when he prescribes Afinitor, a targeted treatment approved in 2012. He ends up lowering doses in almost all of them because of shortness of breath, rashes, or other problems.

"I would say that I've been surprised," he said. "Many more patients than I expected experience some side effects." On average, the drug increases the time to cancer progression or death by 4.6 months.

Lynn Lewis, 55, a New York metastatic breast cancer patient who has followed Cristofanilli to three hospitals over 71/2 years, estimates she's tried 20 treatments, including chemo, hormone therapies, and targeted drugs. As for side effects, she said, "I don't think there's anything I haven't experienced."

Now on Afinitor, she's had bloody noses, mouth sores, acid reflux, rashes, and high blood pressure.

She doubts oncologists can ever handle all the side effects of the ever-growing number of drugs they give. "I think there should be a whole separate area of people who manage side effects," she said.

From a psychological standpoint, doctors say, chemo has one advantage. In most cases, it's taken for a specific period. That is true of some immunotherapies as well. The targeted treatments, however, are often taken for as long as patients respond to them, so making side effects tolerable is essential.

"These drugs are taken continuously. It's not like three or four months, you suck it up and you're fine," said Toni Choueiri, an oncologist at the Dana-Farber Cancer Institute.

He led a study published in 2012 that found three targeted drugs used to treat liver and kidney cancer - sorafenib, sunitinib, and pazopanib - were more likely to cause fatal side effects such as bleeding and heart attacks than standard treatments. The rates were still low: 1.5 percent vs. 0.7 percent.

"Just because they're outpatient and called targeted or smart drugs," Choueiri said, "it doesn't mean they have no toxicities at all."

Luckily, doctors said, some problems diminish the longer patients are on the drugs. And, for some medications, a serious rash is a sign the treatment is working.

Overall, chemotherapy drugs are more toxic than other cancer treatments because they don't distinguish well between cancerous and normal cells. There's a lot of collateral damage. The targeted therapies affect fewer noncancerous cells but can still have systemic effects.

The most common side effects of the 65 or so targeted and immune therapies are diarrhea and liver problems, according to the National Cancer Institute. The list includes problems with skin, blood clotting, and wound healing as well as high blood pressure.

Most side effects are not life-threatening, and many patients can keep working while taking the drugs.

Eaby-Sandy said skin problems, which occur with several of the new drugs her patients take, can become infected. More often, they are just embarrassing and very uncomfortable. Some patients get widespread rashes that look like acne. Some just turn red. Some have terribly dry, itchy skin.

"From the patient standpoint, they hate it," she said. "It looks terrible. It hurts. It burns."

Frances Zsolnay, who is being treated for lung cancer at Fox Chase Cancer Center, was warned that Tarceva causes rashes.

In her mid-60s, she figured that was no big deal. She had had chemo and loved the idea of taking little pills at home.

She had underestimated. "My whole face, there was not a clear spot on it," she said. "My nose was black and blue from it." At its worst, she said, the rash looks like "prickly heat with a pus pocket on top."

It spread into her scalp. "You can't even believe it itches so bad," she said.

The drug also made her eyelashes grow so much they could become ingrown. So Zsolnay, who lives in Fairless Hills, has them plucked.

She has to keep Imodium handy for the diarrhea.

After two years on the drug, her side effects are pretty stable. "Right now, if you were to look at me, you'd think I had the measles," she said.

She can live with that. "The positive is it keeps you alive."

Langer said standard chemotherapy typically keeps metastatic lung cancer patients alive a year to 18 months. Those who have the right mutation to take Tarceva average two to three years.

Jennifer Kessler, 63, a Penn lung cancer patient from King of Prussia who has been on Tarceva since June 2013, has had side effects similar to Zsolnay's, plus some.

She's had dry mouth. Food sometimes tastes tinny. Her skin gets excruciatingly dry.

"I joke that it takes me longer to put on lotions in the morning than to put on makeup and get dressed," she said. She uses lotion sprays on her back and splurges on Kiehl's Body Butter.

The skin around her fingernails sometimes cracks open. "It's really, really painful," she said.

Then there's the hair. The hair on her head is curlier and darker. There's more hair on her face. She has to trim her eyelashes and her eyebrows.

"I have the eyebrows of an 80-year-old man and I have Betty Boop eyelashes," she said.

Mathew Rotenberg, a 41-year-old lawyer, was diagnosed with metastatic melanoma in 2013. He has tried both an immune therapy and targeted drugs.

The first immune therapy, Yervoy, gave him 10 weeks of colitis. He needed IV steroids and fluids. He had to wear diapers. Ultimately, the drug didn't work for him, but he saw the side effects as a small price for the chance of a strong response.

Then he tried targeted drugs that sometimes made him look like he had acne, but that, for a while, stabilized a disease that can kill quickly. Now, he's taking another immune therapy, Keytruda, that has had only mild side effects so far. He still has the acne.

With two children younger than 6, he'll put up with some skin problems.

"The choice," he said, "is you're either dead or you're dealing with some side effects."

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@StaceyABurling