Center for Lymphoid Malignancies at Columbia University
How much of your interaction with patients do you see as being emotional support versus medical care? How do you manage the balance?
About 30 percent of the time I spend with my patients includes addressing their concerns about the social aspects of being diagnosed with T-cell lymphoma and receiving treatment. After the medical discussion about the diagnosis and an outline of the treatment plan, patients then ask me how this is going to fit into their current day-to-day life. We speak about the treatment, how long it will take, the side effects of the treatment, if working will still be a possibility and how this news will affect close family, and extended family and friends. I find that most of my patients tend to address the concerns of others in their lives before we address how they are feeling. Once a patient feels that the logistics have been ironed out we will then speak about how they are feeling and managing their diagnosis. I follow-up with their visit to make sure that my patients know I am there to talk with them by phone for not only physical side effects from the disease and treatment, but also how they are managing emotionally throughout their treatment, and especially when treatment has completed and they transition to follow-up care.
Treatments can be administered in an outpatient setting or in the hospital. If the treatment is administered inpatient it may involve some planning for their day-to-day responsibilities, depending on the length of stay. I find that these concerns can cause the patient more stress and mental anguish if we do not discuss it upfront. Since the hospital can be a foreign place to a newly diagnosed patient we spend time discussing what their hospitalization will include and how to best have family members and friends help during this time. Many of our patients are young and often are not married, so their parents and friends are usually involved in their treatment and care.
When a patient is undergoing treatment many of the side effects can be observed as a physical change or a difference in their appearance, but it is important to remember that emotional side effects need to be addressed in a similar fashion. Even though they may not be able to be visualized, I know that there is a need to take time to talk through the unknown next step or the anxiety leading up to a scan week. These discussions go hand in hand with the discussions we have about the physical side effects they are experiencing.
As the primary person administering treatment on a day-to-day basis, do you have any thoughts on how best for patients to cope with treatment?
Coping is a mechanism that some people have fine-tuned throughout their lifetime and although they may have had difficult situations in the past, they were able to create successful outcomes. However, in this case I advocate for my patients to not depend on only their coping skills but to use the resources that they have around them. As much as we talk about the disease, the aspects of treatment and the side effects, and how their body may physically feel after the therapy, these effects are not the only concerns of their treatment. There are many factors including transportation to and from the hospital, who will be making dinner that evening (and for the week), and who will be helping when they just don't feel like doing that task around the house. In my opinion how these concerns are addressed and handled, all play a role in how the patient will cope throughout their treatment.
At the beginning of treatment, we suggest that the patient bring someone with them such as a friend or family member. Some patients may choose to be dropped off for their appointments but then they undergo the entire process by themselves. It tends to be a high anxiety day because everything is new and unknown. Additionally, we spend a lot of time educating the patient and their family members on the first day of treatment. We review each medication that is being given and provide the common side effects of each medication being administered. Even though during the first treatment we provide a full and thorough explanation, we do review and continue to explain the side effects during each subsequent cycle. This way the education is reinforced and is individualized for the specific side effects that the patient may be experiencing. By providing the appropriate knowledge and supportive care to patients while they are going through this time in their lives I can help them cope so that together we can create a successful outcome.
What advice do you give caregivers when their loved one is getting treatment?
We invite caregivers to come in for the initial visit(s) to hear about the biology of the disease as well as why a treatment plan was chosen. We also ask that they come in when treatment is being administered so they are given the same education as the patient. This is helpful so that when returning home caregivers know what to look for as far as side effects to the treatment. It's important for the patient to know, but often when a patient is not feeling well or is fatigued, they are not as alert to the side effects. I always recommend having a second set of ears present to hear all of the topics that are discussed at the visits, physician visits as well as treatment appointments.
Some advice that I have given to caregivers and have received good feedback on over the years is to always say yes when someone offers their assistance. I stress that a caregiver should always say yes, whether or not there is something to be done at that time. I advise them to put that volunteer on standby for a time when they do need something to be done. It is important for the caregiver to have assistance and be able to rest as well. Whether that consists of a meal being delivered, transportation to the doctor's office, or helping with the children's activities. Although the patient is undergoing the treatment and day-to-day battle with the disease, caregivers take on as much stress and burden from the diagnosis and treatment, albeit in a different way. Caregivers do their best to keep the everyday routines uninterrupted while taking on a huge 24 hour a day, 7 day a week challenge of being on call for any concern that may arise. For this reason when an offer is made to support the patient and family it is important to always accept the assistance.
Do you have any tips on how a caregiver can be the best advocate for their loved one in navigating treatment?
The best tip for a caregiver would be to have an open line of communication with the treatment team, both during treatment and in follow-up. Sharing with the medical team how the patient is doing at home gives the medical team insight as to how to best help. At times, patients will experience nausea but they may not alert us because they think it's common to be nauseous after treatment. It's important for patients or caregivers to let us know this because it may be as simple as changing the timing of the medication to minimize the nausea that is being experienced. Through a simple phone call, medication can be discussed and optimized to improve symptoms. By picking up the phone and keeping the healthcare team in the loop the caregiver could easily solve a bothersome issue for the patient. Caregivers should not be afraid of sharing an observation in order to help the patient get through the course of treatment. Some side effects can be easily decreased or mitigated when the healthcare team is made aware of them. Caregivers can assist the patient by acknowledging there is a concern and noting it in a journal or an app like LRF's Focus on Lymphoma. so that patterns can be developed and pre-emptive changes can be made so the next cycle of treatment is more tolerable.
Can you discuss the typical daily maintenance for a T-cell patient?
A patient's daily routine while receiving chemotherapy treatment can vary day to day. Some days there can be more fatigue others, but in general we ask our patients to concentrate on basic activities such as being out of bed, showering, eating and drinking. As healthcare professionals we are able to help relieve most side effects, but without the patient's participation with eating and drinking it can complicate the treatment cycles. Throughout diagnosis and treatment we concentrate on the whole person, not just their disease, disease status, side effects or residual side effects. I know how important it is that patients stay engaged in life by getting up in the morning and taking a shower. It does sound simple and somewhat easy, but when undergoing therapy with low energy it is not always the easiest task. Some days this one task may be exhausting but it is important from many different perspectives, both medically and emotionally. As an example, it is important that a patient is out of bed and sitting up in order for them to engage their core muscles and to fully expand their lungs in order to avoid an infection. Therefore, we recommend getting out of bed in the morning, showering and moving to a new location, even just a side chair, to sit up straight so deep breaths can be taken and core muscles can engage while sitting up.
Throughout treatment we stress the importance of hand washing multiply times a day for the patient as well as any friends and family that may visit. We ask that patients avoid large crowds, so they are not exposed to unnecessary illnesses.
I do ask and recommend that at the end of treatment that patients begin physical therapy a couple of times a week to regain muscle strength and stamina. It can be difficult when recovering to feel like being active on your own, so physical therapy can be of assistance for patients in becoming more active again.
What are the most difficult aspects of your role in a patient's care and which are the most rewarding?
T-cell lymphoma is a challenging disease to treat due to its variability in presentation of sub-types and how fast growing it can be. The challenges when developing a treatment plan can be with identifying what regimen will work best for the patient's specific disease. Not every T-cell lymphoma is the same and knowing what makes the disease different can aid in choosing the best treatment. The current challenge is to identify what the disease is in a timely manner and establish the treatment that works best for the patient. By accomplishing this goal in an efficient timeframe, it can allow the patient to be less debilitated from the disease and allow more time for the treatment regimen to be effective against their lymphoma.
The explanation of why a different therapy may work better than the current one can also be challenging. Medical oncology is moving forward quickly and we now have specialized chemotherapies that target the specific cancer cells. The newer treatments have different side effects and usually fewer side effects, which can be very different from what patients think treatment should be like and are familiar with.
I enjoy educating patients on the treatments that they are receiving. As much education and as much written material as we give to the patients and caregivers, it can still be challenging to ensure that all of the important details are retained during the duration of the treatment cycles. As much as families and caregivers are attentive during the first cycle, it is very important to remember the information about the side effects for all of the cycles of treatment.
Many of our patients are well read about their disease and what is new and upcoming and I like how they keep us on our toes. I've even learned about a couple of new treatments from my patients. They print things out and bring them and say, "Look, look at this! This is what's happening. Did you know about this?" Even when a clinical trial or new treatment is not appropriate for their case, it may be a perfect fit for another patient in our practice. I think that it is a positive addition when patients are active in their care and it promotes healthcare providers to stay current on the new therapies coming forward.
When someone with T-cell lymphoma comes into our office, they usually come in with their family and it can be a tearful first visit when they first learn they need to start chemotherapy. Sometimes, their chemotherapy may be paired with an autologous stem cell transplant. The word "transplant" often upsets the patient and the family. Healthcare providers use these terms on a day-to-day basis, and sometimes we don't fully regard the stigma that is given to the words chemotherapy and transplant. As specialists in lymphoma, we have a good idea of what patients are able to undergo and complete for the desired outcome. However, it is still very difficult for patients and families to understand how they will complete the full treatment plan, recover, and feel well once they are finished.
One of the happier moments in my day is when a patient come in and says, "I did it, I'm done and it wasn't as bad as I pictured it was going to be". I know when I hear that, that as a team we have helped to mitigate the treatment side effects as well as help with the emotional and social hurdles that may have happened along the way.
Is there anything that you'd like to add?
I think the Internet is a fantastic tool that patients and caregivers alike can use to get information, however, I would recommend that patients and caregivers stay on certain sites recommended by their medical team. Not all websites are useful or helpful, and it's important to remember that everyone's lymphoma, including T-cell lymphoma, is quite different. Patients can connect to other patients and exchange lots of good information, but it can be difficult to filter through all of the information that may not be relevant.
I know that many patients use Facebook as a resource. They are able to talk about the different medications that they are taking and how they're feeling on them. Caregivers can also join groups and together they visit different T-cell lymphoma websites to talk about the disease and its treatments. I recommend staying away from searching the disease on a search engine because the websites that may come up, may not be the best medically accurate websites. We recommend using the Lymphoma Research Foundation (LRF) and the National Institutes of Health (NIH) at they all have very good educational materials.
How are you involved with the Lymphoma Research Foundation and why would you recommend a patient become involved with the organization?
The Lymphoma Research Foundation is a wonderful resource for a variety of reasons. I've had the privilege of contributing to the Foundation by speaking at both patient and nursing educational forums. For nurses we concentrate on exploring rare types of lymphomas and the new treatments that have been approved in those indications. We concentrate on how to administer the medication and manage the side effects. By holding nursing educational forums throughout the nation, nurses are able to become more familiar with rare lymphomas and develop a comfort level with the new treatments that have been approved. The patient education programs are fantastic. The amount of information and guidance that is given face to face, or through webcasts cannot be compared. If a patient or family member is able to attend an in-person patient conference, it is a way to solidify what they already know and to answer disease specific questions, as well as to hear all of the new information that is in development. I have had many patients attend these educational sessions and report that they are inspired by all of the new information that is in development for treating lymphoma.