CAREGIVING CORNER: HELPING YOUR LOVED ONE THROUGH SYMPTOMS AND SIDE EFFECTS OF TREATMENT

Supporting your loved one through treatment is easier when you have some information about what to expect. A large part of your caregiving will likely involve helping your loved one through cancer symptoms and the side effects of treatment. Besides providing home care, the caregiver should know which symptoms or side effects should trigger a call to the doctor’s office and which would actually require seeking emergency care. It is helpful to have the phone number, email, or some other way of communicating quickly with your doctor’s office handy at all times. Also, you should ask what to do after hours. If you do seek emergency care, it’s still worthwhile to contact your treating physician’s office to let them know you are seeking emergency care. This way, they can be on hand to advise the emergency medicine personnel, who might not be familiar with the therapies your loved one is receiving.

Skin Cancer Symptoms

While NMSC is often symptomless, NMSC can become itchy. Some NMSCs, particularly if more advanced, can cause pain. The more advanced the tumor, the more the nerves can be affected, and the more intense the pain can become. You, as a caregiver, or your loved one will need to communicate with the care team of doctors and nurses so that pain can be assessed and managed.

Caregiver Quotable

The fact that my father was actually complaining about the pain he had in his neck and face told me his pain was a lot worse than I thought. But the good news is that when immunotherapy drug for his cancer was working, he felt a lot better. We could tell because he was able to take less pain medicine.

– Bruce, caregiver for a nonmelanoma skin cancer patient

With different treatments come various possible side effects. As a caregiver, your role will be to assess these side effects and determine when the appropriate time is to contact your loved one’s healthcare provider with any concerns.

Surgery

Complications from surgery can include sensory nerve damage, which can lead to localized numbness, a pins and needles sensation, burning, or severe pain. Motor nerve damage resulting in weakness or paralysis can also occur. Another possible immediate-to-longer-term complication is a wound infection. Additionally, lymphedema (an accumulation of lymph in the soft tissue) results in swelling and is caused by damage to or the removal of lymph nodes/lymphatic channels. It can occur in patients with NMSC who have undergone more extensive surgery and can be present for either the short or long term. If your loved one is suffering from lymphedema, special lymphedema therapists can help with massage, skin care, exercises, bandaging, or a compression garment.

As a caregiver, you most likely will be helping your loved one after surgery and monitoring for surgical complications. Most surgeons provide a list of complications to look for post surgically, and you should be familiar with that list and know what to do for each complication. Again, be sure to know when you need to call the surgeon’s office and when you should seek emergency care.

Radiation

Radiation therapy is another possible treatment for NMSC. Side effects are usually restricted to the area that has been radiated, though fatigue is a common symptom of radiation. Additional symptoms may include irritation to the skin, ranging from redness to blistering and peeling; changes in skin color; loss of hair in the area of treatment; damage to salivary glands and teeth when treating cancers near the mouth; difficulty swallowing and a less active thyroid gland (associated with radiation therapy to the head and neck).

As a caregiver, you may be able to help with homecare to alleviate some of the radiation side effects. For example, you can assist in moisturizing the radiated area after each treatment with a cream or lotion approved by the radiation team. This may lessen skin irritation and help soothe the area of redness. Also, be sure your loved one gets plenty of rest, eats a balanced diet, and protects the radiated area from sun, heat, and cold.

Your loved one’s dermatologist or radiation oncologist will most likely provide a list of side effects to look for after radiation, and you should be familiar with that list and know what to do for each complication. Again, be sure to know when you need to call the dermatologist’s or radiation oncologist’s office and when you should seek emergency care for complications after radiation therapy.

Systemic Therapy

Immunotherapy

Immunotherapy works by revving up the immune system to fight cancer. Therefore, immunotherapy can cause a range of side effects that are autoimmune in nature. Associated side effects of immunotherapy include lung, liver, skin, neurologic, cardiac, and eye problems; gastrointestinal inflammation; and hormonal issues affecting glands. Reducing the immunotherapy dosage is not recommended. Instead, immunotherapy will typically be stopped and then restarted once the immune system has been quieted, generally by prescribing corticosteroids. The drug may be discontinued in severe or life-threatening cases.

As a caregiver, you can play a key role in assessing these side effects and alerting the healthcare team as soon as possible. Because immunotherapy works in a different manner than the other treatments for NMSC, early recognition is particularly important so that the team can intervene early and calm the immune system. Sometimes the early signs of an immune-related side effect are subtle. In fact, many oncology teams tell their patients to report any difference in how they feel to the oncology team—it doesn’t even have to be recognizable as a side effect! As a caregiver, you can help recognize these early side effects and make sure they are reported.

This website contains guidance on when to call the oncologist’s office regarding the different side effects of immunotherapy and when to seek emergency treatment (see individual side-effect documents and videos at Side Effects of Immunotherapy: What You Need to Know)

Not every medical professional is familiar with the side effects of immunotherapy. Therefore, your loved one should keep a wallet card on the checkpoint inhibitor s/he is taking. For a free, printable wallet card, visit the Oncology Nursing Society website by clicking here. The information should be presented anytime your loved one seeks medical care outside of the oncology office.

For more details about addressing the side effects of surgery, radiation, and immunotherapy, click here.

Hedgehog-Inhibitor Therapy

Hedgehog inhibitors are medications taken in a pill form and are available for advanced BCC. Currently, there are two hedgehog inhibitor medications approved by the FDA for BCC: vismodegib and sonidegib.

The most common side effects of hedgehog-inhibitor therapy include muscle spasms, taste changes, weight loss or loss of appetite, fatigue, nausea and vomiting, diarrhea, constipation, and joint pain. Be sure to alert the healthcare provider of any side effects. You and your loved one should have clear instruction on when to call the office and under what circumstances to seek emergency care for hedgehog-inhibitor-related side effects. As with immunotherapy, s/he should keep a wallet card that states they are receiving a hedgehog inhibitor.

For a discussion about how to help the patient manage side effects of hedgehog inhibitors, click here.

Another important side effect of Hedgehog inhibitor therapy is embryo-fetal toxicity, which means that these drugs can cause severe birth defects or fetal death. It is important for women to use birth control while on this therapy and for 20-24 months after therapy ends, depending on the medication prescribed. These drugs can also be detected in semen. Therefore, men should use condoms while receiving treatment and for 3-8 months thereafter, again depending on which medication is prescribed. As a caregiver, you may or may not be involved with directly addressing this safety issue, based on your relationship to your loved one.

Caregiver Quotable

I was able to assess my father’s side effects by talking with him and making it a conversation. When he was under treatment, I’d ask him how he was doing, and check for possible side effects. When he had a rash, we weren’t sure if it was from his heart medicine or his cancer treatment; it was uncomfortable for him. I was in charge of his MyChart account so I was able to ping the doctor, and she prescribed a steroid cream that pretty much reduced the rash and itching.

–Bruce, caregiver for a nonmelanoma skin cancer patient