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Infusing Hope

The Process of Immunotherapy Outpatient Infusion

Dec 21, 2016

Stacey Dobbs RN, BSN is the Oncology Clinical Trials Nurse Coordinator at W.G. "Bill" Hefner Veterans Administration Medical Center. In a recent interview, Stacey described her work as an infusion nurse and some of the challenges that patients receiving immunotherapy have faced.

Tell us first a little about where you work and the kind of work you do.

Stacey Dobbs
: I’m the Oncology Clinical Trials Nurse Coordinator. I started that about a year ago and for two years prior to that, I worked outpatient infusion strictly. We do a lot of clinical trials with immunotherapy—there’s not a whole lot of trials out there with new chemotherapy. So everything is kind of target-driven and the immunotherapies are the ‘big thing.’ My job entails coordinating those clinical trials now; educating our infusion nurses, especially if it’s a new drug that maybe they don’t know about; and educating the patients so they know what to expect in terms of side effects. So far, these can be generic across the board for a lot of the immunotherapy drugs.

PD-L1 inhibitors are given as an IV infusion every two or three weeks. Could you talk a little bit more about the process of immunotherapy outpatient infusion?

Dobbs: Typically, the first infusion is given over an hour. As long as the patient does well, they can usually do it over about 30 minutes in their subsequent infusions. Of course, you’re going to monitor them, especially the first time, but also [during] the subsequent infusions for those immune-related adverse events (irAEs), such as fever, respiratory distress, development of a rash, itching. We haven’t really experienced a whole lot of reactions with the immunotherapies, especially the newer ones, but it’s definitely something to still keep in the back of your mind, because with these drugs the reactions tend to be a lot worse.

Figure 1. Signs and Symptoms of irAEs1-2
System irAE Signs + Symptoms
Gastrointestinal Immune-related colitis Diarrhea; increasing bowel movement frequency; abdominal pain; blood/mucus in stools or dark, tarry, sticky stools; bowel perforation; severe stomach area pain/tenderness; ileus
Hepatic Immune-related hepatitis Abnormal liver function tests or total bilirubin; yellowing of skin or whites of eyes; dark urine; easy bruising or bleeding; severe nausea or vomiting; right-sided abdominal pain; drowsiness; decreased appetite
Skin Immune-related dermatitis Pruritis; rash; skin changes
Neurologic Immune-related neuropathies Unilateral/bilateral weakness; sensory alterations; paresthesia
Endocrine Immune-related endocrinopathies Extreme fatigue; persistent/unusual headache; mental status, mood, or behavior changes; dizziness/fainting; hair loss; feeling cold; constipation; voice deepening; weight gain/loss; rapid heartbeat; increased sweating; abdominal pain; unusual bowel habits; hypotension
Pulmonary Immune-related pneumonitis Radiographic changes; new or worsening cough; chest pain; shortness of breath
Renal Immune-related nephritis and renal dysfunction Increase in serum creatinine; decrease in urine output; blood in urine; swelling in ankles; loss of appetite
Other Changes in eyesight or eye inflammation; severe or persistent muscle/joint pain; severe weakness; changes in laboratory findings indicating other system involvement (e.g., hematologic, pancreatic)

How long does a course of treatment typically take?


Dobbs: That depends on the type of cancer patients have and what line of therapy they’re on. Typically it’s until the disease progresses, and the medication isn’t working anymore. But with immunotherapies, there is often a flare response. So patients can actually stay on these therapies longer, because of that flare response, than what you would typically expect.

Patients will have a CT scan or a PET scan or some kind of imaging that shows progression. With chemotherapy, you stop that chemotherapy and move on to something else. With immunotherapy, the body can have a flare response (pseudoprogression) because the immune system is being activated. So the tumors can appear to grow at first, but the research is showing that the patients are actually typically responding and they just need some more time for that to show on their imaging.

Are there any particular challenges that patients have with this kind of infusion?

Dobbs: The biggest challenge is just getting patients to report what they [may] think is not necessarily a big deal, because you do have these immune responses that can very quickly develop into something bad. Patients with a little bit of diarrhea might not really think that’s a big deal, but for a patient that’s on immunotherapy, it can be a big deal and it can be a big deal very quickly. So the biggest challenge is just really kind of drilling that into patients—if you have a side effect that you may not think is that big of an issue, at least just call us and give us an opportunity to evaluate it.

Have you had experiences where patients haven’t thought that a certain symptom was a big deal and it’s developed into something more intense?

Dobbs: We had a patient that developed a little bit of chest tightness. He just thought that it was like a bronchitis, but he had his immunotherapy on a Monday, developed that on a Wednesday, didn’t think to call us until Friday, and eventually it just led to pneumonitis because he did not get the treatment that he needed quick enough.

Where you able to do something for the patient?

Dobbs: The first time, yes.

What is your education strategy for patients to inform them about side effects and what to do about them?

Dobbs: Our biggest strategy is just letting patients know about the need to inform us early on about any side effects. We go over all the flu-like symptoms, diarrhea, nausea, vomiting, any shortness of breath. If it already exists, if it gets a little bit worse, we need to know about it as soon as possible. But for some reason, patients tend to let it fester for a couple of days.

It’s important to remind patients that the fever-type reaction may not be immediate. It can be later and that they need to know to notify the oncology clinic if that is going on. Although we monitor for it here, we sometimes forget to remind patients that they might develop a fever later on. We need to know if it [their temperature] gets beyond a certain number.

Keeping neutropenic precautions is important. Keeping everything clean, staying away from sick family members—those are things that can get lost. Even though immunotherapies are not necessarily myelosuppressive the way that chemotherapies are, because of the immune system reaction, the immune system is already in overdrive. You don’t want it to have to battle something else too.

Do you have resources that you use to support patient education?

Dobbs: You know, at the VA, we really don’t. We give patients a packet of paperwork at the beginning of chemotherapy and immunotherapy education and go over the process, but I don’t know that that’s the best resource. When a patient is first diagnosed with cancer and all of a sudden they’re starting treatment, they get so much information, all this paperwork, and they don’t necessarily remember to go back and refer to that.

Is that something that infusion nurses do, as a part of their role? Remind patients to review that paperwork?

Dobbs: Yes, and checking symptoms when the patients come in, reminding them to give us a call if they have any new development of symptoms. In between those two to three weeks, there’s no real follow-up, you know, saying, ‘Hey, are you doing okay? Is anything new?.

What can patients do to prepare themselves emotionally and physically for a good sort of infusion experience?

Dobbs: I think to prepare themselves, patients need to bring things that they’re comfortable with. For instance, bring a nice comfortable blanket from home, a pillow, a favorite book to read, knitting. If patients do things that they would normally do at home, they can keep themselves busy. They’re not just sitting there watching a television show that maybe they don’t normally watch or conversing with people that they don’t normally converse with. [They can] bring a friend or a family member so that they can have that person to lean on and talk about everyday stuff. Just doing things that are comfortable in life so you can get your mind off of what you’re sitting there doing.

What about self-care in between infusion sessions? What kind of things would you typically be educating patients about in terms of self-care?

Dobbs: We definitely educate patients on nutrition, making sure that they stay hydrated, making sure that they’re eating protein, eating good, healthy meals. We have a nutritionist as a great resource who sees a lot of our patients. We also educate patients about their skin because with immunotherapies a lot of patients can get a rash and dermatitis-type reactions that can go from ‘not too bad’ to ‘really bad’ very quickly. So good skin hygiene is important, keeping the skin moisturized and clean.

What are some of the issues involved in coordinating clinical trials in immunotherapy that you might have seen in your practice?

Dobbs: Because immunotherapies can have these immune-related side effects, you really have to make sure that the patients’ performance status is still decent enough to start or continue a clinical trial. If their performance status is declining, it’s hard to identify a reaction to immunotherapy versus if it’s just disease progression. When those two get mixed in together, if you miss it being a side effect, it can go from bad to worse very quickly.

Our physicians actually kind of go over the Eastern Clinical Oncology Group (ECOG) scale with patients and get the patients involved, but I don’t think the patients actually understand the importance of their functioning status.

One of the things that other clinicians talk about is that patients are afraid to report side effects because they think that will impact whether they’re still eligible for treatment with immuno-oncology agents or not. Is that something that you’ve come across?

Dobbs: Yes, with our patient who didn’t call us and let us know that he had developed that shortness of breath until two days later, I think that was kind of in the back of his mind—If I tell them this, they may take me off the study, and I won’t be able to get this drug. I think also their fear is not necessarily just staying in the study. I think their fear is that somebody is going to give up on them.

A lot of patients don’t see hospice and supportive or palliative care as a good thing. They see it as a very, very terminal, finite thing that the provider has given up on them and doesn’t want to give them treatment, although the patient still wants to go on. I think what really is happening is there’s a misperception from the patient understanding the severity of their disease.

A lot of patients and family members have hope that there will be a cure tomorrow, and maybe there will be, but I think they hold out that hope. They feel like once we start, if they mention side effects and we take them off a study or they mention things that are getting worse, and the doctor mentions hospice or palliative or supportive care, I think patients feel at that point that everybody has given up on them and doesn’t want them to live. But that’s not really the case. We want patients to live a good life until the very end.


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