Treatment Name: Romidepsin (Istodax®)

Romidepsin (Istodax®) is a Chemotherapy Regimen for Lymphoma, T-Cell

How does romidepsin work?
Romidepsin is designed to either kill cancer cells, or slow growth of cancer cells by helping activate anti-cancer genes that have been turned off.

Goals of therapy:
Romidepsin is a chemotherapy drug given to shrink tumors and decrease symptoms of T-cell lymphoma. Romidepsin is not commonly given with the goal of cure.

Schedule

Romidepsin intravenous infusion is given over four hours on Days 1, 8, and 15
- No treatment is given on Day 22

Romidepsin is usually given in an outpatient infusion center, allowing the person to go home afterwards. On occasion, romidepsin may be given in the hospital if someone is too sick.

Romidepsin is repeated every 28 days. This is known as one cycle. Each cycle is repeated until the drug stops working or when intolerable side effects occur.

Click here for common starting doses.

Side Effects

In clinical studies, the most commonly reported side effects with romidepsin are shown here. Drug side effects sometimes have percentage ranges [example 51 – 54%] because they differed between clinical studies:

Nausea (51 - 54%)
Fatigue or muscle weakness (41 - 52%)
Low white blood cells (29 - 49%)
Increased bleeding risk [low platelets] (40 - 47%)
Anemia [low red blood cells] (21 - 40%)
Vomiting (19 - 34%)
Diarrhea (11 - 23%)
Altered taste (6 - 21%)
Fever (17 - 20%)
Infections (6 - 18%)
Headache (11 - 17%)
Constipation (8 - 15%)
Weight loss (8%)
Mouth sores (7%)
Stomach pain (6%)
Upset stomach (5%)
Trouble breathing (5%)
Fast heart beat (5%)
Chills (5%)
Water retention (2%)

Approximately 10% of patients discontinue romidepsin due to unacceptable side effects.

Side effect videos
Nausea and VomitingFatigue AnemiaDiarrheaConstipation

Monitoring

How often is monitoring needed?
Labs (blood tests) may be checked before treatment and before each dose of romidepsin. Labs often include: Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), blood potassium, blood magnesium, plus any you doctor may order.

How often is imaging needed?
Imaging may be checked before treatment and periodically during treatment to check for side effects and to see how you are responding to therapy. Imaging may include: electrocardiogram (ECG also known as "EKG"), computed tomography (CT) scan, or positron emission tomography (PET) scan.

How might blood test results/imaging affect treatment?
Depending upon the results, your doctor may advise to continue romidepsin as planned, or delay or switch therapy.

Questions to Ask Your...

A better understanding of your treatments will allow you to ask more questions of your healthcare team. We then hope that with the answers, you will get better results and have greater satisfaction with your care. Because we know it's not always easy to know what questions to ask, we've tried to make it easy for you!

Choose any healthcare provider below to see common questions that you may want to ask of this person. Then, either print each list to bring to your clinic visits, or copy the questions and send them as a message to your healthcare team through your electronic medical record.

Questions to ask your Doctor Nurse Pharmacist

What does my caregiver need to know before I start therapy? Caregivers: Caregivers will benefit from knowing the treatment you are receiving and what side effects they can expect. Caregivers may also benefit from knowing what "as needed" medications you have to treat common side effects of chemotherapy. It is important that they know the treatment schedule in case they need to take time off of work to bring you to the infusion center or doctor appointments. Use our Treatment Tracker to help you plan for treatment, doctor appointments, lab draws, and send all of these reminders to your smartphone. Work with your doctor and ask questions early and often before small problems become big ones. Knowing who to call during business hours as well as after hours is also extremely important. Reference
Am I able to be the primary caregiver when my loved one is receiving cancer treatment? Caregivers: Caregiving can be very difficult, especially if you live in a remote location and do not have access to resources, have little money, are elderly yourself, or are caring for someone who requires a complicated treatment regimen (Reference). Ask your doctor if they think you are able to care for your loved one based upon the treatment they are receiving and the condition they are in. When possible, reach out to other family members for help and seek assistance from friends. Many people will want to help, but may not know how unless you tell them! Take good notes during appointments and ask your doctor what might make things easier for you as a caregiver. For example, by connecting with a social worker, together you may locate resources such as grants, or temporary housing to make it easier for you to care for your family or friend. For example, you may qualify for free house cleaning.
What is a clinical trial and am I eligible to participate in one now? Clinical Trials: A clinical trial is a type of study in which people are assigned to groups that either receive a new treatment intervention or standard treatment. In clinical trials with patients with cancer, it is sometimes unethical to give no treatment or a placebo. The type of treatment received by the patient is determined by the study protocol. Ask your doctor if they have any clinical trials that are enrolling patients or know if any at treatment centers nearby. You may also visit the website clinicaltrials.gov to see what clinical trials might be available for all cancer types and where these clinical trial medications are being offered.
What are the best ways to minimize costs of treatment? Cost: One way to minimize costs associated with cancer treatment is to ask your doctor what types of tests they are ordering. If they are expensive, ask if they are covered by insurance before getting the test. If you are concerned about costs, you can also ask your doctor to only order tests that are absolutely necessary and to minimize the ones that are unlikely to change the plan. Some anti-cancer and supportive care medications are now available as generic formulations and preferred by insurance companies. If these medications are still expensive, ask your doctor to work with your pharmacist to find cheaper alternatives. Some drugs have co-pay cards or patient assistance programs that can help reduce the cost.
If I don't fully understand what type of cancer I am dealing with, how do I learn more about it? Diagnosis: There are many reputable online resources to learn more about specific types of cancer, such as the American Cancer Society. Once a final diagnosis is made by your doctor, they can share this information with you and point you to other resources they know as well.
Will this treatment cause birth defects if I get pregnant while I am receiving treatment? Fertility: Many drugs used to treat cancer have not been tested in women who were pregnant. You and your doctor should discuss whether a baby might be at risk for birth defects if you get pregnant while receiving anti-cancer medications. Similarly, the risks to a baby fathered by men taking anti-cancer medications are largely unknown. If you are a man about to take take an anti-cancer medication, you should first discuss the potential risks with your doctor.
Will I need to change what I eat during cancer treatment? Healthy Diet: Ask your doctor if a dietician is available to speak with you. The dietician can thoroughly evaluate what you eat (your diet) and can work with your doctor to come up with specific recommendations based upon your diagnosis and treatment. In general, most experts recommend that you consume a diet that has enough protein to ensure you maintain your muscle mass. Some experts recommend plant-based protein whenever possible (Reference). A diet that contains whole grains, fiber, fruits, and vegetables is generally recommended, but some experts caution that uncooked fruits or vegetables during eaten during periods when your immune system is greatly suppressed could lead to infection. Because many treatments do not suppress your immune system, you may be able to continue your normal diet. Ask your doctor and dietician what is safe and good to eat and what is not. Visit Stanford Health Care's website on nutrition for recipes. Additional Reference found here.
Am I able to safely continue over-the-counter and herbal supplements while receiving this treatment? Home Medications: Some over-the-counter (or "O.T.C.") vitamins or medications and herbal supplements may increase the risk of side effects of therapy, or cause the treatment to not work as well. Be sure to tell your doctor and pharmacist everything that you are taking, including prescription and non-prescription medications, as well as any eye drops, inhalers, topical medications such as creams or patches, implants or injections, which are sometimes forgotten but are all medications too!
How might I maintain a better sense of control? Mindset: Your doctor may have advice specific to your situation, and may recommend that you see a social worker who can listen to you and recommend specific resources, often at little to no cost! In the meantime, consider visiting our emotional wellness page to learn about our "Life H.A.C.Ks"
What if I'm worried that the treatment won't work? Mindset: Our mindsets describe for us what is right, what is possible, and what is natural. Changing our mindset often requires a combination of education and communication with others. In general, mindsets can be shaped by our education and experiences, people we trust, the media, social networks, culture, or religion. When it comes to treatment, it is okay to be uncertain. Your doctor wants to do what is right and will only offer treatment they think will help. Try to change your mindset by talking with your doctor. The belief that treatment will help you meet your goals is powerful and may actually lead to beneficial physiologic changes in your body.(Reference)
Do I need to see any other doctors? Monitoring: If you have not seen a specialized cancer doctor, known as a medical oncologist for solid tumors such as breast, lung, or prostate cancer, or a hematologist for cancers such as leukemia or lymphoma, it is generally recommended that you do so. A cancer doctor will typically take over coordinating care and monitoring after surgery has been performed to remove the cancer. An oncologist or hematologist will help determine if medications may be needed to get rid of any remaining cancer cells, or to help prevent the cancer from coming back.
What do I need to know regarding my blood tests, which are sometimes referred to as "labs"? Monitoring: Unless you have access to them via your electronic chart, we recommend that you always ask for a copy of your labs. There are hundreds, if not thousands, of different blood tests available for your doctor to order. Some are common and some are not. Have your team explain to you what blood tests they have ordered and what the results mean when you do not understand. This way you will have a better understanding if the treatment is working or not. Plus, doctors may prescribe medications when your lab work is abnormal. When your lab work returns to normal you may be able to stop taking these medications, or reduce the dose.
Is it helpful and safe to exercise before treatment? Physical Activity: Physical exercise before, during, and after treatment has been shown to decrease the number of side effects and increase survival for patients with certain cancer types. You may not feel like exercising before treatment, but once you start feeling better ask your doctor about recommendations on the best way to start moving your body again in a way that is safe and beneficial. Importantly, you may have certain physical limitations now that may prevent you from doing certain exercises that may get better with treatment and time.
Is this treatment designed to make me live longer, feel better, or both? Prognosis: The effectiveness of treatments are improving year after year for many types of cancer. Often times, but not always, treatments significantly extend life span and make people feel better, even for certain incurable cancers. To help you decide on the right treatment, ask your doctor what you can expect from this treatment as compared to alternatives.
How well does this treatment work for people with the same type of cancer? Prognosis: Clinical trials results (which can be found under references at the bottom of ChemoExperts.com treatment webpages) give doctors an idea of the response rate and what to expect when prescribing a specific cancer treatment. However, clinical trials enroll patients who are not always similar to the general population. It is sometimes harder to tolerate treatment when you have certain other conditions, such as high blood pressure, diabetes, or being overweight, among others. Because of this, the expected response rate to treatment is best answered by your doctor.
What is the stage of the cancer and will my treatment be based upon the stage? Prognosis: Some cancer types are assigned a "stage," which is used to define where in the body the cancer has been found on imaging scans such as a PET scan, CT scan, or MRI scan. Certain blood disorders, such as leukemias, are not assigned a stage because they travel throughout the body in the bloodstream.
How can I keep track of all of my doctor visits, lab appointments, scans, and medication refills? Schedule: Your doctor and nurse will give you a schedule of treatments, including dates and times. They may be subject to change based upon your condition, your schedule, and the clinic's availability. There are many ways to keep track of things, including writing them in a calendar, or using your smartphone. To get started, try using our ChemoExperts Treatment Tracker to input the date and time of your treatments and appointments into the calendar. Then using your smartphone, put in the code you have generated and sync all events to your smartphone's calendar so that you won't miss a single appointment!
Are there any long-term side effects associated with this medication, and if so, is there anything I can do to prevent them? Side Effects: Long-term side effects of anti-cancer medications are specific to each medication. Not all anti-cancer or chemotherapy medications have long-term side effects, but several have been associated with memory difficulties (sometimes called "chemo brain"), heart problems, diabetes, numbness or tingling in hands and feet, fertility problems, or fatigue. Ask your doctor if the medications you are receiving may cause any of these (or others) and if there is anything you can do to reduce the risk or prevent them altogether.
What can I be doing to reduce the number of side effects I may get? Side Effects: If you have a good understanding of what side effects to expect you can begin to take measures to possibly prevent them. Watch our side effect videos to learn more. For side effects that we do not yet have videos for, ask your doctor for ideas on how best to prevent them or if they occur, manage them appropriately. Doing so may keep you out of the hospital or even save your life!
Will I need a stem cell transplant using my own stem cells? Stem Cell Transplant: A stem cell transplant using your own cells is known as an autologous transplant, or "auto" transplant for short. Another way of thinking about this type of transplant is that it enables doctors to give a highly toxic dose of chemotherapy aimed at killing all cancer cells that would not be possible without stem cell rescue. After the chemotherapy has had a chance to kill the cancer, your stem cells are re-infused into your body and re-populate the immune system with the goal of rescuing you before you develop problems such as life-threatening infections.
Will this treatment cause fatigue and if so, what can I do about it? Supportive Care: According to one large study, fatigue is reported by roughly 6 out of 10 people receiving treatment for cancer (Ref: Roila F, et al. Support Care Cancer. 2019). It is commonly described as the hardest side effect to deal with when receiving cancer treatment. In about half of these people, fatigue lasted for more than 4 months. The investigators also found that the most important factors related to the development of fatigue were decreased physical activity, poor sleep quality, pain, anxiety, anemia, and depression (Ref: Roila F, et al. Support Care Cancer. 2019). Fatigue may impact your relationship with others, and ability to work or have fun. It is often under-treated and importantly, medications are not always needed to make it better. If fatigue is an expected side effect of your treatment, or you feel it already, work with your doctor now on ways to prevent fatigue or to decrease its impact on your lifestyle.
What is supportive care? Supportive Care: The term "supportive care" was developed to describe the management of side effects from cancer treatment, but has been expanded to include all symptom management for patients before, during, and after treatment. Supportive care requires good communication among patients and health care providers, as well as family and caregivers. In addition to improving your physical functioning, supportive care also considers social, spiritual, and psychological wellness when considering ways to improve your quality of life. In addition to your doctor, supportive care is best delivered through a multi-disciplinary team, which may include specialists from nursing, pharmacy, nutrition, pain management, social work, physical therapy, and others. Ask your doctor what you can do to ensure your needs are being met and that maintaining the highest quality of life possible remains a primary focus of care. (Olver I, et al. Support Care Cancer. 2020)
How do I keep good records of my treatment history and what documents should I ask for? Treatment: We think the best way to keep track of things is to come prepared for clinic visits with pre-prepared questions, like this one! Then take good notes throughout each and every visit. At the end of each visit, ask your doctor for copies of your labs, scan results, pathology reports, and any other test results they might have.
What is a consent form and do I need to sign it before treatment? Treatment: A consent form contains information about your treatment, including possible risks and expected benefits. Signing the consent means that you understand and agree that the possible benefits outweigh risks and that you are willing to move forward with treatment. Not all treatments require a consent form. Your doctor will tell you if a consent is needed.
How many treatment options are there to treat this cancer, and why did you choose the one you did over the others? Treatment: Please list all alternative treatment options here:

1) ___________________________________________________________

2) ___________________________________________________________

3) ___________________________________________________________

4) ___________________________________________________________

5) ___________________________________________________________
Should I take time off of work to receive this treatment? Work: Many anti-cancer medications can be taken at home thus allowing one to continue to work full-time. That said, side effects of pills can be as severe as some intravenous therapies and may prevent you from working until they are under control. If you need to receive intravenous infusions, check our schedule section to see how long the infusion might take and decide whether it would be good to take that day off or adjust your work hours when possible. Based upon your specific treatment, your doctor will help you decide what to do and when appropriate, may write a letter for you to take time off of work.
If possible, should I change how I do my job in order to balance treatment-related side effects? Work: While not always possible, some people are able to change what they do at their jobs to reduce some of the stress or physical demands on their body while undergoing treatment for cancer. Many people do not want to stop working and this might be one way to keep working until you are feeling back to your normal self.
If I am working, are there effective treatment options that also minimize interruptions to my work schedule? Work: If you work full-time, treatments consisting of all oral therapies (pills) may cause the least disruption to your work schedule. However, pills often require that you take them continuously as long as they continue to work and are not causing harsh side effects. Sometimes intravenous (I.V.) medications are given over a pre-specified period of time, depending upon the medication and cancer type. Tell your doctor what your work schedule looks like and the type of work you do so that you can decide together on a treatment that makes the most sense for you. On occasion, other therapies do not exist, but thankfully cancer researchers are working on developing new treatments every year.

What if my job as a caregiver is getting harder? Caregivers: Caregivers can be partners, children, parents, siblings, friends, or colleagues. Importantly, the needs of the person receiving treatment may first grow and not decrease until that person feels better. As a result, the primary caregiver may take on more tasks, such as cooking, laundry, house cleaning, or child care. Although being a caregiver can be both rewarding through improved self-worth, and relationship enhancement, it can become overwhelming at times too (Reference). Tell your doctor what has become most difficult for you to manage. And remember, it's okay to ask other potential caregivers for help with tasks to make your job as a primary caregiver a little easier.
What should I do if I receive a bill for something that I thought would be covered by insurance? Cost: On occasion, items may be submitted and denied by insurance for a variety of reasons. Sometimes the medication or procedure is not covered, but sometimes claims are submitted with too little information to be approved by insurance or sometimes claims are submitted with the wrong information (example: miscoded). A denial letter from the insurance company, when issued, usually helps to explain the situation. If you receive an unexpected bill, ask your doctor if there is a financial counselor or someone you can speak with to help you.
How do the results of my genetic tests affect the treatment I received? Genetics: Doctors now have the ability to send cancer cells for genetic testing. The tests look for abnormal segments of DNA that give clues to what treatments might work and which treatments might not be worth trying. The reason is that previous studies have shown them to be ineffective when certain genetic mutations are present. Your doctor can tell you if a genetic test is worthwhile, or if already sent, what the results are and how they affect treatment choice.
What if I do not feel like eating during treatment or if foods taste different to me now due to treatment? Healthy Diet: Some treatments are well-known to change the way foods taste. Some experts recommend avoiding your favorite food if it tastes different during treatment so that when you are finished with treatment, you will still enjoy eating it. In addition, if food makes you nauseated, try to avoid foods that produce a lot of aroma, or leave them uncovered so that they do not produce overwhelming smells when you take the lid off. If you are unintentionally losing weight, ask your doctor if you can meet with a dietician who can recommend specific foods that will help prevent further weight loss.
What foods should I avoid while receiving treatment? Healthy Diet: Be sure to check with your doctor and pharmacist about foods that may interact with your treatment because certain medications may be affected. For example, grapefruit and grapefruit juice commonly interacts with certain anti-cancer pills.
What foods should I eat during treatment? Healthy Diet: Ask if a dietician is available to speak with you. In general, most experts recommend that you consume a diet that has enough protein to ensure you maintain your muscle mass. Some experts recommend plant-based protein whenever possible. If you have had antibiotics recently, dairy products may be more difficult to digest and cause abdominal pain. It may take time to re-populate the good bacteria in your gut once antibiotics are stopped. Some experts also do not recommend probiotics and would advise you talk with your doctor and pharmacist before taking a probiotic supplement while receiving cancer treatment. In general, it is best to avoid highly processed foods, and those that have a lot of sugar. Ask your doctor or clinical pharmacist if raw fruits and vegetables are safe to eat with your treatment as these are often the best source of necessary vitamins and nutrients your body needs to stay healthy.
What if my other doctors prescribe medications while I am receiving treatment from you? Home Medications: Before you start taking medications, it is usually a good idea to tell your hematologist or oncologist about newly prescribed medications from other physicians, physician assistants, or nurse practitioners to avoid any dangerous drug-drug interactions. If they do not know the answer, they will refer you to a pharmacist.
Do you recommend I make any lifestyle changes now, or is it best to wait until after treatment? Mindset: Now might be the time to start thinking about lifestyle changes. Are you avoiding things that make you unhealthy and doing things that build you up? Treatment will likely work better if you are in better physical condition! If you are feeling fatigued from treatment, watch our video on fatigue for some ideas on regaining energy.
What if I am concerned about my sexual health? Who can I talk to? Mindset: Intimacy is an important part of many people's lives. Cancer and its treatment (surgery or medications) may cause anxiety, fear, a depressed mood, nausea, or fatigue, all which can lead to decreased sexual desire, decreased function and lower level of intimacy. It is a common problem and is probably underreported. Although it may be a bit uncomfortable to talk about at first, your doctor will understand. Certain medications may help improve your sexual health. Additionally, ask your doctor about the availability of counselors or other specialists that can speak with you and your partner. These specialists may have you fill out a brief questionnaire that will help them help you! Reference
If I am having a hard time coping with the diagnosis, treatment, and all of the disruptions they have caused in my life, are there support groups available? Mindset: Support groups available online or in-person and may be offered by your treatment center. Ask your doctor which ones they recommend.
How quickly does this treatment work and how will I know it is working? Monitoring: The first sign that a treatment is working is often when your symptoms reduce in severity. Your doctor may order blood tests and scans at various time points throughout your treatment to determine how well it is working. On occasion, treatment may be switched to a different regimen if the blood results or scans do not show that the cancer is not responding as expected.
If I need to reduce the dose(s) of my treatment, will it affect how well it works? Prognosis: Certain anti-cancer medications can be reduced without affecting the overall chances of getting rid of the cancer. Your doctor or clinical pharmacist may be able to answer this question for you based upon the specific cancer and treatment. Sometimes dose reductions are made due to side effects. Other times dose reductions are made due to kidney, or liver problems when these organs are involved in breaking down the medication. In these instances, it is expected that the anti-cancer medication will achieve the same level in the body as it would in someone with normal kidney or liver function. Likewise, without changing their effectiveness, anti-cancer medications may require a dose reduction if they interact with another medication you are taking to treat another illness.
Is there anything that can be done if I am overwhelmed by the number of appointments for doctor visits, scans, and blood tests? Schedule: Ask your doctor if certain labs can wait to be drawn at the same time as others, or drawn a little early to avoid unnecessary trips. Or, ask if there are alternative medications that you might be able to take that do not require as many visits required for monitoring. Importantly, some tests should not be delayed or drawn early because they may affect your doctor's ability to make a decision that is important to your overall health.
How do I know when to call about a side effect and when to try to manage it on my own? Side Effects: Ask your doctor and nurse which side effects from your specific treatment are most concerning and when to call the clinic, or an after-hours on-call doctor for help. That said, sometimes even seemingly simple problems such as mild constipation should prompt a phone call to your doctor in order to prevent a small problem from becoming a major one, such as a complete bowel obstruction. Most importantly, by calling your doctor when you are not feeling well, side effects will be appropriately managed and you will feel better faster.
When do you consider stem cell or bone marrow transplantation? Stem Cell Transplant: Depending upon your age and the type of cancer, some patients are candidates after finishing their first treatment regimen, while others might wait until a relapse is detected and receive a different treatment before a stem cell transplant is offered. All types of stem cell transplants (allogeneic, autologous) have the potential for both short- and long-term side effects afterwards, thus the decision to pursue a transplant is not a simple one and requires consultation with a doctor who specializes in stem cell transplantation to ensure that the benefits likely outweigh the risks.
What can I be doing to take care of myself while receiving treatment? Supportive Care: It is important for a patient to be able to activate and support self-management, as well as engage in an exercise program that is safe and tailored to their abilities. Self-management refers to tasks related to the management of the disease or treatment, working with new emotions, and the possibility of changing roles in relationships in order to continue to live well with the condition (Chan RJ et al. Support Care Cancer. 2020). The delivery of information, such as that which is found on ChemoExperts.com, can help patients gain the knowledge necessary to begin to self-manage side effects such as fatigue, pain, diarrhea, constipation, and more. Certain side effects require immediate attention by your health care provider and it is important that you know what these are and when to seek immediate medical attention. In order to effectively take care of yourself, set goals with your doctor and formulate actionable plans that enable you to work through problems when you can, but also seek help in a timely manner when you need it. Ask questions when you do not understrand something. As clinicians ourselves, we see too many patients remain silent during their clinic visits. Now is your time to speak up!
How long has this treatment been used to treat people? Treatment: The longer a particular treatment has been in use the higher likelihood that your doctor will have real-world experience with it and be able to tell you what the road ahead might look like. However, for the older regimens still in use, the clinical trials that led to their use did not typically report detailed information on side effects like newer therapies do now. Thus, by reading the references (found at the bottom of every ChemoExperts.com regimen page) for cancer treatments, your doctor will still have a good idea of what to expect for medications they are prescribing for the first time.
Are there other treatment options if this one stops working or does not work at all? Treatment: Your doctor can give you a general idea of the likelihood of response to treatment based upon characteristics specific to you. Know that not everyone responds to treatment the same because we are all unique. Genes, gender, size, and other medications we take are just a few things that can sometimes influence response to treatment.

If this treatment stops working, please list treatment options here:

_____________________________________________________________,

_____________________________________________________________,

_____________________________________________________________,

_____________________________________________________________,
What can I be doing to increase the chances of this treatment working? Treatment: Your doctor may recommend dietary changes, increased physical activity, or simply staying on schedule with all prescribed treatments. Tell your doctor if you are missing doses of medications and the reasons why. They are here to help you, not judge you, and would rather know so that they can give you the ideas or resources you need to be successful.

Is anyone in my family at risk of inheriting this cancer? Genetics: Certain types of cancers carry a risk of being passed down to children. Most cancers however, either arise from unknown causes or develop from risk factors such as being overweight, having certain types of infections, or being exposed to environmental toxins such as chemicals, smoke, or excessive sun exposure. Some cancers are related to your age. Your doctor will know whether this cancer may have been due to the genes you inherited and whether it is worthwhile for your family members to get tested.
Could persistent fatigue after treatment be related to what I eat? Healthy Diet: It has been shown in a clinical study of cancer survivors that a diet high in vegetables (particularly green leafy vegetables), nuts and seeds, whole grains, and fish was associated with a lower chance of having fatigue as well as lessening the severity of fatigue. In addition, it may improve the quality of your sleep. Just like exercise, sticking to a diet takes a certain amount of discipline, but it is worth it! Know that it may take time to feel the full benefits of incorporating more of these foods into your diet. If your diet could use improvement and feeling better matters to you, then give it your best effort to make these changes. You may lose weight and over time be able to lower the dose of, or even stop medications for high blood pressure or cholesterol if you take these as well.
How long do I have to continue new medications started after diagnosis? Home Medications: If you receive a cancer treatment that is given for a pre-specified amount of time, then you may be able to discontinue some of the supportive care medications shortly after you are done with treatment, such as antacids, anti-nausea, anti-viral, antibiotic, and anti-fungal medications. If you were taking a pain medication to treat cancer-related pain, and the pain is now improved, now might be a good time to consider trying to decrease the dose. This can be done over time, with help from your doctor, until you are no longer needing to take it.
What if I'm still experiencing anxiety after treatment? Mindset: Anxiety after treatment is natural and may come and go. If it is physically affecting you or your ability to sleep or socialize with others, talk with your doctor about it, and consider speaking with someone such as a social worker. Talking with someone can be very therapeutic, and may be better than taking medications for anxiety that may have side effects, such as fatigue.
How often do I come to clinic after this treatment is over? Monitoring: If the cancer goes away and you are in remission, your doctor will recommend a specific monitoring program for you after treatment is complete. There are many different types of cancer and they do not always behave in the same way. It is important that you follow your specific monitoring program which is designed to detect cancer (if it returns) early with the goal of making it easier to treat. If you miss a follow-up appointment or lab check, be sure to get it rescheduled right away. If the cancer is not in remission after treatment, your doctor may offer an alternative treatment if one exists.
What can I do if I'm having a hard time exercising? Physical Activity: Your beliefs about what you can do and your expectations regarding how your body will benefit likely have a strong impact upon whether you start exercising, and whether you stick with it. Some experts find that the most successful people make physical activity a part of their routine, just like you do with brushing your teeth. Over time, you will find that daily physical activity will lead to many health benefits for both your body and your mind. To avoid hurting yourself, consider starting out slow. Every little bit counts, especially when it becomes a regular practice. Ask your doctor about the best way to begin a physical activity program and whether they think seeing a physical therapist would help as well. Physical therapists can teach you new exercises and ensure the ones you are doing now are safe and beneficial.
What does the term "relapse" mean and how might it affect me? Prognosis: A relapse refers to the cancer going away and coming back within a certain timeframe. Generally speaking, if it comes back within a year or two, your doctor will likely discuss a second line therapy that you have not received before. If it comes back many years after the first treatment, your doctor may discuss repeating the original treatment since it was effective the first time.
What can I do if my treatment is over and I am still having side effects? Side Effects: It is not always easy to predict if side effects from treatment will go away or when. When speaking with your doctor, try to describe what is troubling to you and how it limits the things you want to do. By setting goals, you can tell if the interventions you make to reduce the side effect are helping you get closer to goal. For example, chemo brain (cancer-related cognitive dysfunction), may limit your short-term memory. Your doctor may be able to recommend treatments, including those that do not have more medications. (Chung NC et al. Oncology. 2018)
What can I do to get back to feeling like myself? Supportive Care: Many people are motivated to seek the information and tools necessary to speed recovery and reduce the chance of the cancer coming back. For both those living with or without active cancer, a primary goal is to improve the quality of life. (Doyle C et al. CA Cancer J Clin. 2006). Getting back to feeling like yourself might seem difficult, especially if you do not know where to start. Some people buy supplements thinking that pills will help them feel better. Unfortunately, these often do not work. If you are not quite feeling like yourself emotionally, physically, or spiritually, try to define what it is you want to feel like first. Being goal oriented may help you determine what the path forward looks like and what you need to do to reach your goals. (RJ Chan et al. Support Care Cancer. 2020). It may require that you talk with your doctor, who can further refer you to others for help when needed. For most people, the road to recovery requires that you maintain a healthy weight, get into an exercise routine, and eat a healthy diet. Life after recovery from treatment is not always easy, and living with cancer can be more difficult. Set goals with your healthcare team to help motivate you. Believe in yourself because you can do it!
If treatment required me to stop working, when will I be feeling well enough to return to work? Work: The answer to this question varies based upon the type of cancer and treatment received. One study showed that people continually feel better the farther out from treatment they get, with improvement still seen for some as late as 18 months after the last dose of therapy. People with blood cancers and those that require chemotherapy, as compared to targeted therapy or surgery, may take longer to fully recover.

Questions to ask your Nurse Doctor Pharmacist

What can my caregiver expect to experience emotionally? Caregivers: Being a caregiver can hold a lot of meaning and personal satisfaction, but it is important to be aware that caregivers experience emotional pain, sadness, and frustration as well. They may experience caregiver fatigue and, if so, might look for a local or online support group to assist with navigating the ups and downs. Ask you nurse if there are specific things that they think might help your caregiver as well.
Who should I consider to have as my caregiver during cancer treatment? Caregivers: Your primary caregiver should be a trusted spouse, partner, parent, or adult child. You can also consider close friends, co-workers, or neighbors to assist.
What tasks might be required of my caregiver? Caregivers: If you are not feeling well, your caregiver may need to be available to drive you to and from your clinic appointments, lab draws, and infusion visits. If the treatment you are receiving increases the risk of serious side effects, you may need to have someone available around-the-clock in case you need urgent help or deciding if you need transportation to the ER. At some or all stages of your treatment, you may need a caregiver in home 24 hours a day to help you with eating and bathing until your are feeling better. Caregivers often play an important role in helping you keep track of your scheduled medications throughout treatment. Ask your nurse what other ways your caregiver may be able to help.
Are there any programs that I can use to help minimize the cost of my treatment? Cost: If your cancer treatment is going to be costly, there may be financial or patient assistance programs available to you to help lessen out-of-pocket costs. Ask your nurse if any of these are available and if someone such as a financial counselor can help you. You may qualify for financial or patient assistance programs, or supplemental insurance. If you do not know your pharmacist, your nurse may be able to connect you with one that may help reduce the cost of medications.
If I have to spend a long time at the infusion center, should I bring food with me? Healthy Diet: Some cancer treatments take several hours to complete causing you to spend a significant part of your day in the infusion center. In some cases, you may be at the infusion center when it is time to eat. Ask your nurse if food is typically provided to patients in the infusions center and if not, what the policy is for patients who want to bring food with them. A tablet or computer, or a good book often helps the time go by faster as well.
What kinds of foods should I eat to prepare for treatment? Healthy Diet: Before treatment, ask your nurse if the specific treatment you are receiving is likely to change the way food tastes or if you are likely to lose weight. Now might be a good time to reevaluate what you eat on a daily basis. If you eat a lot of sugary or fatty foods, it would be good to eat more wholesome foods such as vegetables and fruits. Remember, it is not always what you are eating, it is what you are NOT eating that matters as well. Fruits and vegetables may contain valuable cancer-fighting compounds that may help you heal faster. If your healthcare team advises that you avoid vegetables, ask them for the written information that supports this recommendation.
What resources can I use to help me make better choices regarding my diet as I begin cancer treatment? Healthy Diet: Many oncology clinics have a dietician available to help you make positive changes in your diet. If one is not available, your nurse may be able to give you appropriate resources to help you make safe and positive dietary changes.
Will I need to start any new medications? Home Medications: There may be several medications that need to be started for anti-cancer therapy. Some of these medications may help you to avoid possible side effects from treatment and are therefore extremely important. Ask your nurse about the new therapies you are starting and why you need to take them. Knowing what they are, how they work, how often they need to be taken, and the dosages will help keep you safe.
Do I need to stop any of my medications before starting cancer treatment? Home Medications: Some medications need to be stopped or changed before starting treatment because they may not be needed. On occasion, other medications may need to be switched to a different one, or stopped altogether if they interact with new anti-cancer medications or supportive care medications that are prescribed for you. Your nurse can work with your doctor and pharmacist to determine if any changes to your medications need to be made before treatment is started.
What kind of information should I have ready when I call a hospice program for information? Hospice: The referral line will likely need to know the diagnosis, the current status of the disease, current medical treatments, where you are living, what are the current goals of care, and insurance information, if any.
What kind of services do palliative care or hospice nurses provide at home? Hospice: To get a better idea of what palliative care and home hospice services are typically offered, ask your clinic nurse if he or she can arrange a meeting for you to speak directly to one of these nurses in person or over the phone. They can give information on how palliative care and supportive care hospice services help to improve quality of life.
If I decide to enroll with hospice, what therapies will I have to stop? Hospice: When goals of care are no longer aimed at treating the disease and are more focused on making patients comfortable, some cancer medications may be stopped. Typically these are medications that may be causing side effects or are medications that may no longer offer benefit to make someone feel better. If you are considering a treatment that is unlikely to make the cancer go away and are considering an approach aimed at making you feel better now, ask a hospice nurse to help you with this decision, They can tell you what medications you are allowed to continue taking once enrolled in a hospice program and which medications are likely to be stopped. No decisions need to be made right away and you lose nothing by having the conversation.
At what point should I start considering comfort care or hospice services? Hospice: Often times people enroll in comfort care and hospice services at a time that is too late to offer the full benefits. Ask your nurse to connect you with a program early on for information. Gathering information does not mean you need to stop treating the cancer and will leave you more prepared to identify the optimal time to change gears and focus on quality of life. Many insurance plans cover supportive care, palliative care, comfort care, and hospice care programs for individuals who meet criteria.
What should I do if I'm not a person who likes to ask for help? Mindset: Your nurse wants to make your life easier, but won't be able to unless you tell him or her what you are struggling with. Know that most health care professionals genuinely want to help you and the questions you ask now will save both you and them time by preventing problems down the road. If you can change your mindset and begin asking for assistance early, it will help them and it will help you. Problems may be able to be prevented and everyone wins!
Which lab values are most important for me to keep track of? Monitoring: This depends upon your specific treatment, but in general, you should understand the normal ranges for your white blood cells, hemoglobin, platelets, serum creatinine (kidney function), and liver function tests (bilirubin, AST, ALT, Alkaline phosphatase). Your nurse may be able to help you understand what happens if your lab results are not within the normal ranges for these specific tests.
Do I have to come to the clinic for labs or can I get them done at a facility closer to home? Monitoring: Some labs may need to be done at the clinic since not all laboratories have the ability to do them, but some routine labs could be done at a laboratory closer to home to save you a trip to clinic if it is a long drive. If you are interested in getting labs done closer to home, ask your nurse if this would be possible.
Is it important to keep good records of my laboratory results? Monitoring: It is always a good idea to keep good records during your treatment course. Your nurse can help you get the records that you need.
What can I be doing to reduce the number of side effects I get from cancer treatment? Side Effects: If you have a good understanding of what side effects to expect, you can begin to take measures to prevent them. Watch our side effect videos to learn more. For side effects that we do not yet have videos for, ask your nurse for ideas on how best to prevent them or if they occur, manage them appropriately. Doing so may keep you out of the hospital or even save your life!
If I experience an infusion-related reaction to my treatment, how will it be managed? Side Effects: Infusion reactions can be common with certain treatments and can be managed in different ways. If a reaction occurs, nurses will first stop the treatment, then call your doctor for instruction on how to proceed. Ask your nurse to give you information on how an infusion reaction would be managed if it occurs.
What side effects might require a trip to the emergency department? Side Effects: Some side effects can be life-threatening and need to be treated right away! Ask your nurse what side effects can be life threatening and if they occur, need to be treated at the nearest or emergency department (ED) or the emergency room (ER) designated by your health care team.
What is a stem cell transplant? Stem Cell Transplant: A stem cell transplant is the infusion of stem cells collected from yourself, a related donor, or an unrelated donor. These stem cells restore white blood cells, red blood cells, and platelets after your own stem cells have been destroyed by high doses of chemotherapy and/or radiation. Your nurse may be able to further explain the process if a stem cell transplant is needed.
Will a stem cell transplant ever be an option for me? Stem Cell Transplant: Your doctor will be able to answer this question taking into consideration your cancer type, age, overall health, and in certain cases, stem cell donor availability. Some cancers do not benefit from stem cell transplantation, while others may be cured by the procedure. Your nurse may be able to help explain the transplant process and what level of monitoring is required afterwards.
If I need a stem cell transplant, what are the closest facilities that perform stem cell transplants? Stem Cell Transplant: Stem cell transplantation is a very specialized treatment that only certain centers are able to perform. It is possible that there may not be a center in your hometown that performs stem cell transplants. If you are told that you need a stem cell transplant, be sure to ask your nurse what facilities you could possibly go to in order to receive this treatment.
If I have an issue after normal clinic hours, what phone number do I call? Supportive Care: Serious issues can arise anytime of the day or in the middle of the night. Ask your nurse what on-call phone number you need to speak to a doctor or other healthcare professional after hours.
What type of intravenous (I.V.) access is best for this treatment? Treatment: There are many ways to infuse treatment, including a peripheral I.V. line, a port, a PICC line (pronounced 'pick'), a tunneled catheter, and others. Your doctor, nurse, and sometimes pharmacist will work together to determine what is best for you.
If I'm afraid to start treatment, who is the best person to talk with? Treatment: Your nurse may have experience helping other patients who have received the same treatment recommended to you. If they do not have experience, ask your nurse to schedule another appointment with your Doctor to answer questions. You can also ask your nurse if a social worker is available to talk to. They may be able to help you navigate through many of the fears of starting treatment and help you take the proper steps in addressing them.

What should I look for to know if my caregiver is experiencing caregiver fatigue? Caregivers: If your caregiver begins appearing irritable, withdrawn, depressed, stressed, etc. they may be experiencing burnout. Changes in their sleep pattern and/or eating habits may also be a sign. Your nurse may know of other signs to look out for as well.
What if my caregiver is not available? Caregivers: It is important to have a designated back-up during the times your primary caregiver is unavailable or to have a plan in place for the times that they are not around. If you know you will have difficulty making it to certain appointments, ask your nurse if they might be able to reschedule for a time or day that works for you. If you need transportation to a health-related appointment, your social worker may be able to assist, but will need plenty of time to make arrangements for you. In the case of an emergency, never hesitate to call 911.
What can I do to support my caregiver? Caregivers: Encourage your caregiver to schedule rest and relaxation, have other friends or family members take "shifts" being the caregiver, allow friends or loved ones to cook meals, or find local or online support groups when time permits. It is important your caregiver continue to engage in activities that bring them joy, even though they may feel guilty stepping away from their role. Remind them they can't take care of you unless they take care of themselves first! Your nurse may have more specific ideas for you as well.
How can I ensure I am getting adequate nutrition when I have no appetite during cancer treatment? Healthy Diet: When food becomes unappealing, focus on protein shakes, smoothies, electrolyte replenishing drinks, and broth. Ask your nurse to connect you with a dietician to help you with making food choices that agree with you. When all else fails, eat what you can! Most experts agree that a small snack that sounds delicious and stays down is better than nothing at all.
What should I eat if I am experiencing diarrhea during cancer treatment? Healthy Diet: In some cases, diarrhea can be caused by an infection. Be sure to speak to your nurse and care team before attempting to manage diarrhea at home. You should then consider trying the B.R.A.T. diet (banana, rice, applesauce, toast, oatmeal, or crackers) or bland foods. If you like dairy products, know that they may cause cramping in some people during treatment. If your stomach is bothering you, and you are having diarrhea, eat dairy in small amounts until you know you can tolerate a full serving.
Who do I contact if I need a refill on my medications? Home Medications: To make sure that you don't experience any delays in treatment, make sure you ask your nurse who you should contact and how you should contact them when you need medication refills. Also be sure that they have your preferred pharmacy on file so they can send your prescription to the correct pharmacy.
What do I do if I want to take natural or dietary supplements with anti-cancer treatment? Home Medications: Natural or dietary supplements are often unregulated and unproven. They may reduce the effectiveness of certain types of anticancer therapies or chemotherapy, or add additional side effects that you may not be aware of. Because of these things, herbal and dietary supplements are often not advised to be taken during treatment. That said, some supplements may be beneficial and even recommended. Importantly, your medical team can give you specific instructions on what to do if you are interested in these types of therapies. Do not start these therapies without speaking to your medical team first. If you would like to learn more about certain dietary and herbal supplements so you can ask more detailed questions of your doctor, visit this website sponsored by Memorial Sloan Kettering Cancer Center and scroll to the bottom to type in the supplement you are interested in knowing more about.
What should I expect during my palliative care or hospice intake visit? Hospice: The palliative care or hospice intake nurse will assess your current condition, review your records, review your medications, explain the types of services available to you, and make recommendations that can help make your home safer and more comfortable. You can customize the services upon intake and change them as your needs change throughout your care.
If I am having mental health issues during treatment, what resources are available? Mindset: There are many resources that can help people deal with their diagnosis and treatment. Know that you don't have to face mental health issues alone. Talk to your nurse about what services are available at your treatment center to help with anxiety or depression, and ask what other mental health services are available in your area.
Can I come in a day or two early to have labs drawn to decrease the amount of time I wait to receive treatment? Monitoring: In some instances, labs have to be drawn on certain days. In other instances, labs can be drawn a day or two before treatment. If interested, ask your nurse if you need to have labs drawn on the day of treatment or if you can get them done earlier to lessen the time you spend waiting at the infusion center.
Who can help me stay active when I am feeling weak? Physical Activity: In order to maintain activity in a safe manner, ask your nurse to put you in contact with a physical therapist. They can assess your strength level and give you individualized exercises to maintain and build muscle safely. An example is to get up every hour during the day for a short walk in the house to maintain endurance. It might not be easy, but try to stick with it because it may greatly benefit you in the long run.
What side effects should I contact the clinic about if they happen? Side Effects: Ask your nurse which side effects should prompt a phone call and which side effects can be managed on your own. While certain side effects can wait until normal clinic hours to be reported to the clinic staff, some should not wait and need to be reported right away as they may be very serious or life threatening. Ask your nurse what side effects should be reported right away and should not wait.
How can I prevent nausea or make it go away if I get it? Side Effects: There are many anti-nausea medications available. Of the ones you have been given, ask your nurse or pharmacist for guidance which to take and when. If you are having difficulty eating, anti-nausea medications taken 30 to 60 minutes before a meal can sometimes help. Eating soda crackers every couple of hours may help to absorb some of the acid in your stomach. Your nurse may recommend ginger ale, ginger chews, peppermints, or bland foods when you are feeling nauseated. Ensure you are maintaining proper hydration since being dehydrated can make nausea worse. Lastly, remember anti-nausea medications may have side effects too! Ondansetron (Zofran), the most commonly taken anti-nausea medication causes constipation in many people and may require the addition of a stool softener or laxative.
Will I need pre-medications before blood or platelet transfusions? Supportive Care: Not all patients need to receive medications prior to receiving blood products, but in some cases they may be needed. Ask your nurse if you will need any pre-medications prior to getting blood products.
What is a "type and screen" or a "type and cross"? Supportive Care: These are tests that are performed prior to getting blood transfusions. Your nurse can provide information on how they are performed and typically how long it takes to get results.
How should I take care of my central I.V. line while I am at home in-between treatments? Treatment: Each different type of intravenous (I.V.) access requires a different level of care. For example, a PICC line (Pronounced "pick") will need to be flushed more often than a port. Your nurse can give you instruction on how and how often to care for your line. Proper line care will hopefully prevent infections and keep the line working for the duration it is needed. If lines are not cared for properly, they may need to be removed and/or replaced.

How can I thank my caregiver(s)? Caregivers: A heartfelt thank you note or a small gift can be thoughtful ways to show your appreciation for the help you received during treatment and recovery. Although not your primary caregiver, your nurse will have likely played an important role in your care. Nurses are wonderful people and often do not receive the appreciation or recognition they deserve. If your nurse was exceptional and made a difference in your life, consider rewarding your nurse with a small gift if you find it within your means to do so, or write a thank you letter and address it to the place where he or she works.
Can I resume a normal diet now that cancer treatment is complete? Healthy Diet: Some dietary changes that were made during treatment may no longer be needed, while some changes should be continued even after treatment is complete. Talk to your nurse or dietician about any changes to your diet that can or need to be made now that you are no longer on treatment. If you ate a lot of sugary substances before treatment, it is probably best to limit how much you eat and ensure your body is fueled with wholesome, nutritious substances that will keep you performing at your best.
Now that I am done with treatment, what medications are no longer needed and should I restart medications I was taking before treatment? Home Medications: Some supportive care medications can be stopped after treatment is complete and some medications need to be continued for a period of time. Also, some medications that were stopped before treatment may now need to be restarted. Your nurse can work with your doctor and pharmacist to determine what changes need to be made to your medication regimen. It is always good to ask so that you are not taking any medications that you do not really need.
How can I return to a more normal lifestyle after my treatment is complete and not worry too much about the cancer coming back? Mindset: The fear of the cancer returning is a very common and normal fear to have after treatment is complete; however, it should not prevent you from enjoying life. Talk to your nurse to see what tips they can give to help you return to a positive mindset, similar to the one you had before diagnosis. If desired, your nurse can also help set up an appointment with a social worker if you have not already spoken with one. social workers may help connect with resources you did not know were available, which may help you regain a sense of control.
How often will I have to get lab draws now that treatment is complete? Monitoring: Monitoring may be required for some cancer types even after treatment is complete. Your nurse can advise you on how often these need to be done and where they can be taken care of.
What can I do to prevent fatigue or lessen fatigue if I already have it? Side Effects: Regular physical activity and a healthy diet are some of the best things you can do to get your strength back and lessen fatigue. Ask your medical team for specific exercises to do at home. Starting out slow and making small improvements is sometimes the best way to not feel overwhelmed or get frustrated when getting in to an exercise routine. If you want additional help, ask your nurse to arrange for you to see a physical therapist (PT). Many physical therapists have doctorate degrees and are experts in customizing a program that will help you regain strength and mobility.
How long will it take for side effects from treatment to go away? Side Effects: Some side effects may start to resolve shortly after stopping treatment, some make take time to resolve, and some may actually be permanent. It's important that you have appropriate expectations regarding which side effects may resolve and which may not. If your treatment has finished, tell your nurse what side effects you are still experiencing and what you can do to make them go away faster or lessen their impact on your quality of life.
How long will I need my central line and when will it be removed? Treatment: Depending upon the situation, a central line may be kept for several years after completing treatment or it may be removed shortly afterwards. Your doctor or nurse can give you a better idea of how long your central line will be needed.

Questions to ask your Pharmacist Doctor Nurse

Should my caregiver go with me to my doctors visits, infusion treatments, and pharmacy to pick up prescriptions? Caregivers: It is often helpful for someone to go with you to help remember important things related to your treatment. Because it is difficult to remember everything that healthcare providers say, this helper could also take notes on important information that you can both refer to at a later time during treatment. Your caregiver may want to listen to counseling by the pharmacist and take notes while they are teaching you about your medications.
Is my caregiver allowed to pick up my prescriptions? Caregivers: In most cases, a caregiver should be allowed to pick up your prescriptions from the pharmacy for you. Sometimes, a driver's license, government-issued I.D., or other additional information may be needed before a caregiver can pick up certain medications. Ask your pharmacist if any steps need to be taken before your caregiver goes to the pharmacy.
Should my pharmacist know my caregiver's contact information? Caregivers: Yes, if you establish with your pharmacy that your caregiver is an acceptable contact person they can keep that information on file and use it when they cannot reach you, such as when you have new medications to pick up, or if there is a problem filling your medication.
Do I have any gene mutations that can be treated with targeted cancer therapy? Genetics: There are many cancer treatment options available today that target specific mutations responsible for the growth of cancer cells; however, not all mutations can be targeted. Moreover, some treatments are only approved after you try other treatments first and they either do not work or you do not tolerate the side effects. If you are not candidate for one of these therapies at the moment, further testing in the future can sometimes reveal new treatment options by identifying new mutations. Ask your pharmacist if you may be a candidate for any targeted therapies now or in the future, perhaps via a clinical trial.
What foods or drinks, if any, should I be avoiding as I start treatment for cancer? Healthy Diet: There may be certain foods and/or drinks that interact with your treatment or may increase your risk of certain side effects. Your pharmacist can check for possible drug-food interactions to help you avoid certain foods or drinks that might cause problems when taken with your current medication regimen and cancer treatment.
Am I able to safely continue over-the-counter and herbal supplements while receiving this treatment? Home Medications: Some over-the-counter and herbal supplements may increase the risk of side effects of therapy, or cause the treatment to not work as well. Be sure to tell your doctor and pharmacist everything that you are taking, including prescription and non-prescription medications. This includes eye drops, inhalers, topical medications such as creams or patches, implants or injections, which are sometimes forgotten but are all medications too! Consider visiting this website from Memorial Sloan Kettering Cancer Center to learn more about herbal products. When you visit this website, scroll to the bottom of the page to find the herbal medication you are interested in learning more about.
Will I need to stop any of my current medications before starting treatment? Home Medications: By interacting with your planned cancer treatment, some prescription medications may cause an increased risk of side effects, or make the treatment less effective. Because of this, it is very important that your pharmacist review your current prescription medications and work with your doctor to determine if any medication needs to be stopped, changed to an alternative medication, or if they require a change in dose.
How do I deal with being overwhelmed after receiving so many prescription medications? Mindset: Try your best to learn how to pronounce each medication, know how they work to help you, and what dosage you are supposed to be taking. If you feel overwhelmed by this, you are not alone! Ask your pharmacist to help you with each of these. After telling them all of the medications you take, ask them to help you figure out the best time of day to take each one. If you do not already have them, buy two pillboxes to help you keep track of all of the medication you take on a weekly basis. By using two pillboxes you will know when you need to refill a medication well before you run out.
How will I know if my cancer treatment is working? Monitoring: Your doctor will monitor your progress through ordering certain tests designed to tell if the treatment is working. These may include blood tests, or scans, but also a physical assessment of your body's ability to function properly. Ask your pharmacist how they might determine if your medications are working and what the plan will be if you happen to need different treatment in the future. Your clinical oncology pharmacist may be able to help you understand what treatments might be suitable for you to consider in the future.
Will physical activity affect the prescription drugs I am taking? Physical Activity: Most people do not need to limit the amount or types of exercise they do based upon the medications they take. However, there are some types of medications that can impact physical activity. Because certain medications may increase your risk of falling during exercise (examples include certain blood pressure medications, or anxiety or pain medications), it is a good idea to double check with your doctor and pharmacist to learn if you are taking any of these types of medications. Additionally, certain conditions such as having low platelets, or taking blood thinners may increase the risk of bleeding during exercise if the exercise is not done properly. Low platelets can occur as a side effects from certain cancer treatments or from the cancer itself. Ask your pharmacist if there are any medications you are taking that might be unsafe with the exercises you are planning on doing.
Who do I talk to about how long my infusion will take at the infusion center? Schedule: You may look at the schedule section on each one of our ChemoExperts webpages to get an idea, but know that each center may have their own infusion protocols, thus times may vary. If you attend any "Chemo Classes" before your infusion appointment there may be a nurse or pharmacist there to answer this question. Infusion-related reactions may require that you stay at the infusion center longer than originally planned. Because these are not always predictable, it is a good idea to leave plenty of time after the infusion to get to where you need to go.
Who will help me organize my cancer-related medications? Schedule: A pharmacist can help you organize your medications so that you know what to take and when. Most retail pharmacies sell plastic drug organizers (pillboxes) that help with this process. Be sure to ask the pharmacist or nurse before leaving the clinic if there are any new medications you are supposed to pick up at the pharmacy.
What can I be doing to reduce the number of side effects I get? Side Effects: If you have a good understanding of what side effects to expect, you can begin to take measures to prevent them. Watch our side effect videos to learn more. For side effects that we do not yet have videos for, ask your pharmacist for ideas on how best to prevent them or if they occur, manage them appropriately. Doing so may keep you out of the hospital or even save your life!
What are the most important side effects I may experience from this cancer treatment? Supportive Care: Ask your clinical pharmacist if they have personal experience with other patients who have received the same treatment. Knowing you personally, they may be able to help you understand which side effects might be more likely to occur compared to others. Go to our Side Effects section and ask them to explain to you what it might mean to have any of the side effects we have listed. If you are deciding between cancer treatments, you may also want to compare the side effects of multiple cancer treatments by printing the Side Effects section alone and setting each of them side by side. Just remember to go through each one carefully because a short list does not always mean it is an easier treatment!
If I fill my cancer medication at a Specialty Pharmacy and they mail it to my home, who will provide the counseling information? Treatment: The specialty pharmacy is obligated to provide counseling, which may require you to speak with them over the phone. If you are expecting a medication to be filled by a mail order pharmacy, be sure to answer phone calls, check your voice messages, and make sure that your voicemail on your phone is not full. Regardless of where the medication comes from, many doctor's offices will provide counseling using nursing or pharmacist staff.
Is it important to keep good records of my treatment history? Treatment: Keeping track of your treatment history is important especially if you are seeing multiple doctors or use multiple pharmacies to fill your prescriptions. Accurate treatment records should include the names and dates each treatment was started and stopped, and drug doses (example: milligram strength) whenever possible. Ask your doctor or pharmacist if they can provide this information to you. Knowing your treatment history may also help you determine which treatments might be available as an option for you in the future. Knowing exactly what medications you have taken in the past and what you are taking now can also help your pharmacist figure out if certain medications are causing you specific side effects.
What if the cancer treatment prescribed by my doctor is denied by my insurance company? Treatment: If your insurance denies your medication, or prior authorization, your doctor may write an appeal letter, sometimes referred to as a "Letter of Medical Necessity" on your behalf. This describes the importance of the medication they have prescribed and why other treatments are either less likely to work or more likely to cause significant side effects that you may not tolerate. If the letter does not work and the cancer treatment is still denied by insurance, some drug manufacturers are able to offer free medication to individuals who qualify for their free drug programs. You may access these programs by calling the manufacturer, going to their website, or asking your clinical oncology pharmacist for help with this process. Not all manufacturers have free drug programs, so ask your pharmacist if they can help you determine if one is available.
Will any of my cancer medications affect my work schedule? Work: In order to minimize interruptions to your work schedule, ask your pharmacist to help you understand how best to plan cancer treatments around work.

What if after the 1st of the year, or 1st of July my insurance plan resets and I cannot afford my out-of-pocket deductible? Cost: Ask to speak with a financial counselor, a pharmacist, or pharmacy technician that specializes in high-cost treatments. Most specialty pharmacies have these resources and should be able to help point you to potential resources, such as grant funding.
Will my response to treatment be monitored by following certain genetic mutations? Genetics: If your treatment targets a specific genetic mutation, your response to your treatment may be monitored by following the levels of proteins that are made by the mutation or by monitoring to see if the number of cells with the mutation can reach undetectable levels. Ask your clinical pharmacist if any specific labs designed to detect mutations will be followed when monitoring your response to your treatment.
What if my non-cancer doctors prescribe medications while I am receiving cancer treatment? Home Medications: Before you start taking new medications, it is usually a good idea to tell your hematologist or oncologist about newly prescribed medications from other physicians, physician assistants, or nurse practitioners to avoid any dangerous drug-drug interactions. Ask your pharmacist if they are able to screen newly prescribed medications for drug-drug interactions.
Will I be able to stop any of my home medications during treatment? Home Medications: Depending on the type of medication, you may be able to stop some of them during anti-cancer treatment. It is good to continually ask your pharmacist and doctor which medications are necessary in order to keep your regimen to a manageable size.
How will I know if my cancer medications are working? Monitoring: Your pharmacist may help you manage side effects allowing you to avoid cancer treatment dose delays or dose reductions. This will hopefully help you get rid of or control the cancer. Your doctor may determine if the medications are working by performing a physical exam during each clinic visit, asking you to get scans of certain body parts (examples may include X-ray, M.R.I. scan, or C.T. scan), or ordering blood tests to help understand if the cancer medications are working. Ask your doctor or clinical pharmacist to explain the results of these tests to you if you are interested.
Are any medications I am taking preventing me from increasing my physical activity? Physical Activity: If you are taking many medications and you do not know a lot about them, it is possible that they may be causing side effects that are preventing you from doing the things you want to do. For example, people continue medications for constipation which may then cause diarrhea if they forget to stop taking them when the constipation resolves. Certain medications may contribute to profound fatigue that may be limiting the amount of activity you are able to do during the day. Some medications may be interfering with your sleep, such as prednisone or dexamethasone, if not taken early on in the daytime. If you would like to be doing more with your day, ask your pharmacist if you're taking medications that might be affecting your physical ability to exercise or mental ability to stay awake.
If I experience certain side effects during treatment, how long will it take for the side effect to go away? Side Effects: Depending on the specific side effect and how long the medication stays in the body, side effects may resolve quickly or take an extended amount of time to resolve. Your pharmacist can often give you a better idea of when to expect certain side effect to go away or decrease in severity.
If I am given multiple medications designed to take on an "as needed" basis for the same problem, how do I know which order to take each one? Side Effects: It is common for patients to receive multiple medications used to prevent or to treat symptoms such as nausea or vomiting, constipation, pain, or others. If you have received multiple new medications, it may be difficult to know which one to use and when. Based upon the medications you have available to you, ask your pharmacist to help you understand which medication is best to try first, how long to wait for it to work before trying something else, and when it may be best to call the doctor for help. It may take a little time and effort to learn about these medications, but it is well worth it. You may feel much better when you take them at times that they benefit you most and cause fewest side effects.
What can I do to take good care of myself and manage side effects during cancer treatment? Supportive Care: Start by watching all of our side effect videos. They are short and designed to give you background knowledge on the topic as well as ideas on how to prevent and treat each side effect. After watching our videos, ask your pharmacist about specific side effect management strategies for the other side effects listed.
If my prescription is expensive, am I able to ask for a smaller quantity of pills? Treatment: Both supportive care medications and anti-cancer pills can sometimes be very expensive, and either cost you or your insurance company a lot of money. Some medications are required to be dispensed by a pharmacist in their original container with the original seal on the bottle or blister pack (individually sealed medications supplied in a foil pack) and therefore the entire quantity shown on the bottle or blister pack must be dispensed. However, if the prescribed amount medication is more than one bottle or blister pack, you have the freedom to ask for less medication. Ask your pharmacist which medications can be supplied in smaller amounts if you are uncertain you will use the entire amount. Less waste may also be better for the environment.
I always seem to be running low on my medications. What can I do so that I do not have only one pill left at the time of the refill? Treatment: If you have prescription insurance, you are often permitted to refill your medication (if refills are allowed and prescribed) by the 80% rule. For example, if your prescription refill is for a 30-day supply, you may be able to refill it as early as Day 24. If you think you will be taking a certain medication for a long time, work with your pharmacist to determine the earliest date you can refill it to avoid running low on your supply. Additionally, if you plan to go on vacation, tell your pharmacist the exact dates (needed by insurance company) that you will be gone and ask them to get a "vacation override" allowing you to fill more than the typical "one month supply" of medicine so that you do not have to worry about trying to refill the medicine while you are away.
Who should I talk to (pharmacist, doctor, or nurse) about whether it is safe for me to work while taking or receiving cancer treatment? Work: You should first talk things over with your doctor. If your doctor has specific concerns about the medications you are taking, he or she can talk to a clinical pharmacist for help. Your pharmacist may be able to help you appropriately time the medications you take so that any side effects experienced are less likely to interfere with your work and your life.
Will the side effects of the treatment affect my ability to work? Work: Tell your pharmacist what you do for work and they can help you understand which side effects might interfere with your ability to work. They may also be able to help you understand how certain side effects can be prevented, or which ones can be greatly reduced by taking the certain over-the-counter or prescription medications that might not affect how the cancer treatment works.

Who would I talk to about drug cost if I need other treatments? Cost: If you are now in remission, or between treatments, you may want to start with the person who helped you get approval for the first medication. Alternatively, if this was not a pharmacist, know that "clinical oncology pharmacists" are often excellent resources for help with co-pay assistance, grant assistance, or drug manufacturer assistance programs for cancer medications as well as most other medications as well.
Is it safe to restart medications that I stopped taking when I started therapy? Home Medications: Some medications you were previously taking may have had to been temporarily stopped before or during treatment. After treatment is complete, some of these medications may be able to be restarted. Your doctor can work with your pharmacist to determine if you can restart any of these medications.
How will I know when I may resume normal activities after stopping treatment? Monitoring: Many drugs, especially oral medications, have guidelines in the manufacturer's package insert that help you know when it's okay to resume normal activities (diet, sexual activity, breast feeding, and others). Ask your pharmacist to look up the answers for you, or ask your nurse or doctor if you have more specific questions.
Are there any side effects that I might experience even after treatment is completed? Side Effects: Most side effects occur while you are actively receiving treatment, but in some cases certain side effects can occur months to years after treatment is complete. Based upon the treatment you received, ask your pharmacist if there are any side effects that you should watch out for in the future.
Are there any medication(s) that I can stop taking after therapy that will help reduce side effects and help me feel better? Supportive Care: Your doctor will ultimately decide which medications you can stop taking but you should also ask your clinical pharmacist to review all your medicines to see if there are any that are no longer needed.
How long after completion of treatment can I resume a full work schedule? Work: A pharmacist may be able to give you information about how long certain side effects are likely to last after the last dose is taken. Your doctor can assess your overall health status and provide advice regarding when they feel like you are ready to return to work based upon their assessment of your physical and mental health, as well as their experience with other patients who have taken the same treatment.

ChemoExperts Tips

A pharmacist should ALWAYS review your medication list to ensure that drug interactions are prevented or managed appropriately
Clinical trials may exist for T-cell lymphoma. Ask your doctor if any studies are currently enrolling in your area. If not, go to clinicaltrials.gov to search for other centers offering study medications

Patient Assistance & Co-payment Coverage

Patients under the age of 65 years, or those with private insurance plans:
If you have insurance and are looking for patient assistance or copay assistance for Romidepsin (Istodax®), we have provided links that may help.

Visit our Patient Assistance page and click the links to various patient assistance programs for help paying for Romidepsin (Istodax®). Depending upon your income, they may be able to help cover the cost of:

Romidepsin

For Branded medications (may be available for generic medications too), check with the manufacturer to determine if a co-pay card is offered and if it could reduce your monthly copay.

If you are uninsured, check with the manufacturer to determine if you are eligible to receive medication at no cost.

Medicare and Medicaid patients (Patients 65 years or older):
The clinic providing treatment will likely pre-authorize medications and immune therapies such as Romidepsin (Istodax®) and are the best source to help you understand drug cost.

Ask to speak with a patient assistance technician or financial counselor at the clinic or hospital administering this therapy.

Emotional Wellness

What is Emotional Wellness?
Emotional wellness is having a positive outlook balanced with a realistic understanding of current life events. This requires both an awareness and acceptance of your emotions. It is with this knowledge that you can develop a plan to take the necessary actions to positively impact your life.

Emotional wellness uses an ongoing process to continually reflect on the stressors of life in a constructive manner to move forward and create happiness.

Because emotional wellness is deeply connected with physical, social, and spiritual wellness, pursuing it often becomes particularly difficult in times of major illness. Despite this difficulty, working toward emotional wellness has been connected to improved treatment outcomes and a higher likelihood of achieving goals of therapy.

Learn more about pursuing emotional wellness while receiving treatment with Romidepsin (Istodax®)

Individual Drug Label Information

Romidepsin (Istodax®)

Romidepsin is an intravenous infusion
Dosage adjustments may be required for low blood counts or severe side effects
May interact with certain antifungal and seizure medications. Ask your doctor or pharmacist to review your medications for any possible interactions
May interact with grapefruit and grapefruit juice causing increased blood levels of romidepsin. This could increase your risk of experiencing side effects. Avoid eating grapefruit and drinking anything containing grapefruit juice during treatment
Avoid therapy with St. Johns Wort as it will decrease blood levels of romidepsin. This could decrease the effectiveness of romidepsin

General Romidepsin (Istodax) Side Effects

Can cause a rare but serious heart arrhythmia known as prolonged QTc interval. Electrocardiograms and blood electrolytes (potassium, magnesium, calcium) will be checked frequently
Serious infections can occur. Contact your doctor if you experience any signs of a possible illness
Can cause low red blood cells, white blood cells, and platelets
May cause fatigue and muscle weakness
Can cause an increase or decrease in in blood electrolytes
Click on the romidepsin (Istodax) package insert below for reported side effects and possible drug interactions

Side Effect Videos
DiarrheaFatigue ConstipationAnemia

See DailyMed package insert.

References

1. Coiffier B, Pro B, Prince HM, et al. Results from a pivotal, open-label, phase II study of romidepsin in relapsed or refractory peripheral T-cell lymphoma after prior systemic therapy. J Clin Oncol. 2012;30:631-636.

2. Piekarz RL, Frye R, Prince HM, et al. Phase 2 trial of romidepsin in patients with peripheral T-cell lymphoma. Blood. 2011;117:5827-5834.

Created: November 8, 2015 Updated: September 22, 2018

What is Lymphoma, T-Cell?

A disease of lymphocytes called T-lymphocytes, or "T-cells" that are found most commonly in the skin, spleen, blood, bone marrow, and/or lymph nodes. Peripheral T-cell lymphoma (PTCL) and cutaneous T-cell lymphoma (CTCL) are the two main types of T-cell lymphoma; however, there are many different subtypes of PTCL and CTCL and all are very rare.

The exact cause of T-cell lymphomas is not known, but certain viral infections such as the Epstein-Barr Virus (EBV) and human T-cell leukemia virus have been associated with development of T-cell lymphomas. The stage of T-cell lymphoma can vary at diagnosis and throughout treatment. Stages of T-cell lymphoma include stage I, II, III, and IV. The effectiveness of the treatment may depend upon the stage and specific subtype at diagnosis.

NOTE: Treatment Options listed below are not all-inclusive. Other treatments may be available. ChemoExperts provides drug information and does not recommend any one treatment over another. Only your Doctor can choose which therapy is appropriate for you.

Common Starting Dose

Romidepsin 14 mg/m² intravenous infusion is given over 4 hours on days 1, 8, and 15
- No treatment is given on Day 22

Clinical Studies

If you are interested in reading the clinical trials results, please click on references below:

2. Piekarz RL, Frye R, Prince HM, et al. Phase 2 trial of romidepsin in patients with peripheral T-cell lymphoma. Blood. 2011;117:5827-5834.

What is a CBC?

A Complete Blood Count (CBC) is a frequently ordered blood test that tells clinicians the status of your: 1) White blood cell count, 2) Hemoglobin, and 3) Platelet count at the time the test was taken.

Common uses:
1) White blood cell count (WBC): is used to determine infection risk, or response to chemotherapy. Certain chemotherapy agents may harm our good infection-fighting cells. Sometimes chemotherapy may need to be delayed to allow these cells to recover.

2) Hemoglobin: is used to determine if someone is anemic. Anytime the hemoglobin is below 12 g/dL, the person is said to be anemic. Red blood cell transfusions, and sometimes iron can be given to restore the hemoglobin level, but anemia treatment should always aim at treating the underlying cause or condition.

3) Platelet count: is used to determine if the risk of bleeding is increased or if a platelet transfusion is required to prevent bleeding. Certain medications that increase bleeding risk, such as: aspirin, certain chemotherapy agents, and blood thinners, may need to be stopped temporarily until the platelet count is within a safe range.

What is a CMP?

A Comprehensive Metabolic Panel (CMP) is a frequently ordered blood test that tells clinicians the status of your: 1) Electrolytes & Acid/Base status, 2) Kidney function, 3) Liver function, 4) Blood sugar, and 5) Calcium at the time the test was taken. It is commonly used to monitor liver and kidney function when beginning new medications such as chemotherapy. A total of 14 tests are run simultaneously and are shown below.

Electrolytes & Acid/Base status:
1) Sodium, 2) Potassium, 3) Carbon dioxide, 4) Chloride

Kidney Function:
5) BUN (blood urea nitrogen), 6) Serum creatinine (Scr)

Liver Function:
7) AST, 8) ALT, 9) Total bilirubin, 10) Alk Phos, 11) Albumin, 12) Total protein

Blood sugar:
13) Serum glucose

Calcium:
14) Serum calcium

What does Cure mean?

The word “cure” means there are no cancer cells left in the body and cancer will never come back. Depending on the cancer type and stage, this may be the true goal of therapy. However, it is very difficult to prove all cancer cells are gone. Even though images, like X-rays and MRI’s, and blood tests may not show any signs of cancer, there can be a small amount of cancer cells still left in the body. Because of this, the word “remission” is used more often. This means there are no signs or symptoms of cancer. Patients in remission are followed closely for any signs of cancer returning. Sometimes, more chemotherapy may be given while in remission to prevent the cancer from coming back.

Doctors usually do not consider a patient “cured” until the chance of cancer returning is extremely low. If cancer does return, it usually happens within 5 years of having a remission. Because of this, doctors do not consider a patient cured unless the cancer has not come back within 5 years of remission. The five-year cutoff does not apply to all cancers.