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Narrator

We have now learned about how non-Hodgkin lymphoma is diagnosed and how treatment decisions are made.  We learned that there are different types and stages of lymphoma and, therefore, different kinds of treatment.  Many people fear their treatments because of side effects.  Let's listen to another group of lymphoma survivors as they discuss how they manage problems they have had with treatment.  This group is led by an oncology clinical nurse specialist.

Emily (Oncology Nurse)

Welcome to another program for people dealing with lymphoma.  My name is Emily and I am an oncology clinical nurse specialist in the lymphoma clinic.  What we are going to talk about today are the symptoms and side effects that people with lymphoma often have.  While some lymphomas are curable, most people with this illness need some form of treatment on an on-again/off-again basis throughout their lives.  It's important for you to know about common symptoms and side effects of the disease and treatment and how to control and manage them.  Being able to identify and describe what you are feeling is helpful to your health care team so that they can change your therapy if possible, help you feel better, and decrease problems that affect your quality of life.

Our guest expert tonight is Dr. Rodney Jackson, an oncology clinical pharmacist.  He can help us sort through the effects of medicines used in treatment and ways to manage symptoms and side effects.

Rodney (Oncology Clinical Pharmacist)

Hello, and thank you for inviting me.  I know that having this disease presents many trying times.  I want to help you by talking about what you can expect in terms of symptoms of non-Hodgkin lymphoma, side effects of the many medicines used in treatment, and ways to use medicines to deal with some of these problems in the best ways possible.  There is a lot of good information about how treatments affect the disease you have, but remember to ask your oncologist or nurse about possible side effects of the treatments and how they might be managed.

Emily (Oncology Nurse)

During one of our earlier sessions, we talked about the symptoms of lymphoma, and noted that it is often these symptoms that lead people to see a doctor in the first place.  Symptoms like swollen lymph nodes, fever, and night sweats diminish and even disappear soon after treatment is started.  Other symptoms occur as a result of treatment.  The most common problems that occur during treatment for lymphoma are increased risks of infection, anemia, nausea, vomiting, diarrhea, dehydration, and nutrition issues.  Temporary hair loss, or "alopecia" caused by the effect of some forms of chemotherapy, is very common, too.  Although losing one's hair is not life-threatening, it is still very upsetting for most people.  If we don't get to talk about the side effects you are having, or if you want to know more than we have time for now, your own doctor and nurse can share what they know about managing treatment-related problems too.  The National Cancer Institute's website has a link to "lymphoma"  (www.cancer.gov), and treatment-related side effects are described there more fully in the section called "Cancer Topics: Coping with Cancer." Likewise, websites sponsored by the Leukemia and Lymphoma Society (www.lls.org), and the National Comprehensive Cancer Network (www.nccn.com) include information about lymphoma, its treatment, and common side effects.

I also want to make sure to mention that side effects and symptoms may respond to other forms of treatment and coping skills.  For some time now, it's been known that exercise can help relieve fatigue, nausea, constipation and improve appetite and mood.  Yoga, Qigong, progressive muscle relaxation, meditation, guided imagery, and other stress reduction practices are useful for many people, too.  Ask your doctor, nurse, social worker, or physical therapist to help you find local resources and experts for adding complementary therapies like these and others to a full plan for dealing with side effects and symptoms.

Side effects from treatment may differ from one person to another, and can change from one treatment session to the next.  Before you begin treatment, talk with your doctor, nurse, social worker, nutritionist or dietician, or other people on your health care team about possible side effects and ways you and your family members can deal with the changes you could face along the way.  One wife and caregiver correctly said that the battle of lymphoma is "too hard to fight alone, you need support to fight."  That's been the intent of the group–to make sure no one is alone in dealing with this illness.

Rodney (Oncology Clinical Pharmacist)

Probably the most common, and also the most serious, side effect of treatment is damage to the body's immune system – specifically, the white blood cells.  Because of this, people being treated for lymphoma are at risk for developing infections caused by bacteria and viruses.  As a routine, blood cell counts are checked often as patients go through chemotherapy.  Thorough hand-washing techniques and good oral care are simple but very effective ways for all of us to minimize chances of getting infections.  Young children – our children or grandchildren – are likely to bring home infections – colds, flu, and skin infections.  During the times when your white blood cell count is especially low, it's a good idea to avoid being around children and crowds of people if you can.

Emily (Oncology Nurse)

In our clinic, we ask people to avoid using rectal thermometers, suppositories and enemas – any of which can injure the rectal area and allow harmful bacteria to enter the body.  Although we don't suggest special diets during times when the white blood cell count is low, we do suggest that all meats we eat be cooked thoroughly. Many people ask me about getting vaccinations before treatment starts – and that is a complicated question. So, please talk with your doctor about which vaccinations you should have, and when to get them. Many treatment plans include using medicines called "colony stimulating factors," that stimulate the body's production of white blood cells.  For our patients, I've made these instruction cards that describe early signs of infection.  It is important that you have the doctor's office telephone number and another number to call when the office is closed.  We want patients to notify us right away if they have fever over 100.4 (F) or 38 (C), or other signs of infection including redness, pain, or drainage at the vascular access device site, around incisions and other wounds, skin rash or blisters, painful mouth sores or sore throat, and increased heart rate.  We may be able to do the proper assessment in our office, though sometimes, patients go to clinics or emergency rooms.  We try to find the source of the infection and begin treatment for the infection as quickly as possible.  Talk with your doctor or nurse about specific ways to protect yourself from infection, including handwashing and oral care methods, and get specific information about what you should do if you have signs of infection.

Rodney (Oncology Clinical Pharmacist)

Even before treatments are discussed, most people have heard about nausea and vomiting caused by chemotherapy.  It is true that the digestive system is affected by some types of chemotherapy and in the past, these problems have been very hard to manage.  But, these days, nausea and vomiting are fairly well managed with effective medicines — called "anti-emetics" – used along with steroids and anti-anxiety medicines.  Anti-nausea and anti-emetic medicines can be given the night before treatment, and continue during, and for a limited time, after treatment.

Diarrhea can also occur as a side effect of disease and treatment.  The risk of developing diarrhea increases with the use of some herbal supplements, laxatives, antibiotics, antacids and other medicines, and in people who have infection or bowel conditions such as irritable bowel syndrome, colitis, or diverticulitis.  Diarrhea can occur after surgery involving the bowel or after stem cell transplant.  When diarrhea occurs, checking for infection as a cause is usually a first step, and if present, the infection is treated.  Managing diarrhea involves keeping track of fluid intake and output, replacing lost fluids, diet changes, and use of medicines to control and stop diarrhea.

Diarrhea can sometimes be prevented or managed with anti-diarrhea medications.

We try to make sure that patients get enough fluids so that dehydration does not become a problem.  The nutritionist or dietician helps patients make sure that their diets have proper nutrients, too.  So, you see, we try to prevent or at least minimize problems right up front, and avoid more serious problems.

Carlos

I think I've been dealing with this the longest of anyone here – so I have lived through a number of these side effects.  One of the medicines I've been on, I think it was a steroid, really affected my memory and my mood.

Tanesha (Carlos' wife)

Carlos got irritable and moody after he started treatment for the lymphoma, and he was difficult to live with.  I didn't know what I was going to do – what I could do.

Carlos

Yes – I have to admit it, that's true.  At times I felt like a different person.  We didn't understand what was causing me to feel and act that way.

Ari

You know, I just started treatment a short time ago, and I've had some of these feelings, too, but just thought it was "all in my head" (laughs) – that I was depressed and upset about having this disease.  I didn't think about it being related to my treatment.

Rodney (Oncology Clinical Pharmacist)

Let's talk about that.  It's likely that dexamethasone, prednisone, and prednisolone — all steroids — have been part of the treatment that each of you have or are having.  In lymphoma treatment, steroids can trigger the death of cancer cells – which is a good thing - but people often have distressing side effects that can affect nearly all body systems.  Besides the irritability and mood swings Carlos and Ari mentioned, steroids can cause depression, difficulty sleeping, weight gain, increased appetite and general body swelling, flushing and sweating, muscle cramping, digestive tract problems like heartburn, gas, and taste changes, changes in sexual functions, and a "let down" effect when steroids are stopped suddenly.  When it is time to decrease the dose or stop taking a steroid medicine, talk with your doctor or nurse about ways to help "wean" off of the medicine gradually.  Sometimes just adjusting your medicine schedule and adding other medicines can help – something like taking the steroid early in the morning, for example, and taking an over-the-counter or prescription medicine can help with digestion problems.  Sometimes, seeing a specialist is helpful for the complex steroid-related side effects.  We encourage patients to not make any major life decisions while taking steroids.

Carlos

I keep singing the praises of Carlotta for helping me with these.  I didn't think I needed counseling but the mood swings were really bad.  She taught me some specific strategies—deep breathing, a muscle relaxation exercise, and something called guided imagery that have really worked.  She gave me the "Living Beyond Cancer" CD from the Cancer Survival Toolbox® with the instructions for these strategies on it and I use it regularly. 

Renee

I have friends and relatives who've had hair loss from chemotherapy, and I guess that I always thought they made a big deal out of something that was not all that important.  After all, what's more important: losing hair and maybe wearing a wig for a short time, or getting the right kind of treatment for cancer?  But, when it started to happen to me, all of a sudden I understood.  One of my secret vanities has always been my hair – it was sort of like my identity, and made me feel attractive and feminine.  For me, the hair loss was really devastating.  Maybe it's different for the guys: they can just wear a baseball hat and look pretty normal.  But, you see, my hair's all grown back now.

Sam

Well, I disagree: hair loss was a major issue for me.  For most of my life, I've had what my friends call a "flowing mane" of hair, along with a full beard, and, um, lots of body hair.  I lost all of that, even my eyelashes and pubic hair, and now, when friends saw me for the first time, they knew I was very sick, and maybe thought, too, that I was dying.  I would say that this was the most distressing side effect of treatment for me – even more so than the episodes of nausea and vomiting.  Those things would come and go, and could be managed quite well, but my hair loss was with me for the entire time I was being treated.  I couldn't hide or disguise this at all.

Emily (Oncology Nurse)

Over the years, there have been many attempts made to find ways to prevent or diminish hair loss.  Cold caps, ice caps, and even tourniquets applied to the head have been used and studied.  Unfortunately, so far, nothing has really worked very well, if at all.  Most of my patients end up shaving their heads rather than deal with their hair falling out gradually and in clumps that they found a lot more distressing.  I've seen many friends, relatives, and even co-workers band together, with everyone shaving their heads too, in support of someone who loses hair from cancer treatment.  I guess it's a way of making the best of a difficult situation.  I do know that it is important for people to know that hair loss is likely to occur, and to prepare for this as much as possible.  Getting a wig or hairpiece before hair loss begins helps in matching a person's normal hair color and style.  The American Cancer Society and other community resources do offer help for people wanting to use wigs and hairpieces, and there are many stores and catalogs that supply fun and interesting hats and scarves.  The "Look Good, Feel Better" program – a free, community-based service was founded and developed by the Personal Care Products Council, supported by the cosmetic industry, the National Cosmetology Association, and the American Cancer Society.  Oncology nurses and social workers can help you find these useful resources.  Programs for female cancer patients offer beauty tips, group workshops to address makeup, skin and nail care, and ways to deal with hair loss with wigs, turbans, and scarves.  Salon consultations with volunteer cosmetologists are available in some areas, for women who are unable to attend group workshops.  "Look Good… Feel Better" resources for men are a bit more limited, but include a free self-help brochure available at a toll free number (1-800-395-LOOK / 1-800-395-5665) or at a local American Cancer Society office.  Additional information is included on the "Look Good…Feel Better" page of the ACS website (www.cancer.org).

Tanesha

Don't forget to remind everyone about the constipation. 

Emily (Oncology Nurse)

Thank you for that reminder, Tanesha.  Strangely enough, both constipation and diarrhea can be side effects of lymphoma treatment.  I know that people often take constipation and diarrhea lightly, but they can cause major problems.  It's important to be pro-active to prevent these problems from happening – or to start to manage them before they get more serious.

Constipation is common among all cancer patients because of decreased appetite, poor intake of food and fluids, and use of anti-pain and anti-nausea medicines.  Ask your oncology nurse to help you come up with a plan to prevent constipation.

Vincristine is used in several treatment plans for lymphoma, so I think it's worth mentioning here that other important possible side effects of this chemotherapy include damage to the nervous system, causing balance problems and tingling and pain affecting hands and fingers and toes and feet-this is called peripheral neuropathy.

Jose

Numbness in my hands has been a big problem for me because I play guitar and I've been in a group that entertains at small parks and events.  I hate to give up an important part of my life.

Rodney (Oncology Clinical Pharmacist)

Yes, peripheral neuropathy is caused by some of the drugs used in lymphoma treatment.  Sometimes it appears even before treatment starts and we don't really know why that happens.  At best, it's an annoying problem.  At worst, it causes muscle weakness, and severe pain that limits use of the legs, feet, and hands.  Regular check-ups with your doctor or nurse should include exams to check for early signs of neuropathy – things like decreased ability to detect hot and cold temperatures by touch, and slight signs of muscle weakness.  Things used to treat it include Vitamin B6 and nutritional supplements with amino acids, pain medicines, anti-depressants, non-steroidal anti-inflammatory drugs—sometimes called N-SAIDs— and some of the medicines usually given to control convulsions.  The oncology nurse is most likely going to be a good resource for information about early signs of peripheral neuropathy, and what symptoms you should report to the nurse and doctor.

Tanesha

Well, before time gets away from us, I want to bring up something that was a problem for Carlos and me early on.  He might not like that I talk about this, but I think it's important – especially for people here who have just been diagnosed and are starting treatment.  I'm gonna bring up – S-E-X!  Because we are retired, I think that sex isn't something that a lot of doctors and nurses think folks our age are concerned about, but it is.  And, it isn't just about the sex act, it's also about being close and intimate – things like hugging, holding hands, cuddling, and even communication.  When Carlos was first diagnosed, I was almost afraid to touch him.  We never talked about sex or intimacy much in our marriage, so this was hard for us to handle.

Carlos

Hhumpf… it's really hard for me to talk about this stuff, especially with ladies present.  But, at that time, I was so darned tired all the time.  And, I was depressed and angry, too.  I didn't talk with Tanesha about what I was really feeling.  Our relationship was suffering.  My doctor or nurse didn't bring up anything about sex, so I just figured they didn't want to talk about it either.

Tanesha

Well, I saw an article in the newspaper about a psychologist who was going to do a weekend workshop on sexuality for cancer survivors at the local senior center.  I don't know how, but I got Carlos to go – I guess, we had a lot of the same concerns.  We both learned so much – about sexuality and about each other.  At first, the workshop topics and discussions were embarrassing for me – but everyone there was going through similar things – and as the weekend went on, we started to have a good time.  We talked about ways for us to find time together as a couple, changes in the ways that we express our sexuality depending on what's going on with our health issues – like finding bedding, pillows, and other things to support positions that make having sex more comfortable and safe.  I learned about using lubricants to deal with vaginal dryness that's been a problem for me ever since menopause.

Emily (Oncology Nurse)

Thanks Tanesha, for bringing up this important and sensitive topic.  And you're so right – sexuality is important to all of us.  Bottom line…there are lots of resources, including caring professionals, to help people with quality of life issues around sexuality.  The American Cancer Society's web site (www.cancer.org, keyword sexuality) has sections on sexuality for men and their partners, and women and their partners.  An American Cancer Society book, Couples Confronting Cancer, is available from local cancer society units, and may also be on local library shelves.  

One related issue is fertility – especially for younger people.  While lymphoma affects most people when their reproductive years are behind them, there are times when lymphoma affects women before menopause, or men who might still want to father a child.  If fertility is a concern for you, talk to your oncology doctor or nurse about what options you might have to preserve your fertility.  A good fertility resource for cancer patients is the organization Fertile Hope – which can be accessed through the internet website www.fertilehope.org.

One other thought:  just because fertility issues and sexuality have not been brought up by your doctor or nurse, it may be that they expect you to start talking about these issues if they are important to you.  They may also lack knowledge to offer you what you want and need to know.  If this is the case, ask for a referral to another professional who is prepared and willing to offer this kind of expertise.

Sam

I guess one other thing that has bothered me has been how tired I feel all the time.  I know I'm not alone either – seems like everyone I talk to while I'm in my doctor's office is affected by this, in one way or another.  People who have not had cancer treatment just have no idea what it's like.  Why does this happen?  And, have any of you figured out a way to deal with it?  I don't want it to totally take over my life.

Emily (Oncology Nurse)

Sam, you are not alone, and fatigue is an important thing for us to talk about here.  It's the most common side effect of cancer and cancer treatment, and can greatly affect your quality of life.  No one knows what exactly causes fatigue – but most likely it relates to several things going on at once – reduced physical strength and levels of activity, decreased appetite and intake of food, changes in sleep-wake patterns, pain, stress, infection, and anemia are just some of the factors that are often related to fatigue.  Ways of dealing with fatigue can include medicines  and exercise, reducing stress and worry, conserving energy, and promoting more normal sleep/wake cycles.  Rodney, would you talk a little about using medicines to treat fatigue?

Rodney (Oncology Clinical Pharmacist)

The first thing that should happen is to try to figure out if there is something causing the fatigue.  That can be treated.  So, we would check for anemia, depression, anxiety, insomnia, and energy levels and decide ways to deal with those problems when they are present.

Ari

I saw an article in the newspaper telling cancer patients to hit the gym!  It seemed so odd – to use exercise as a way to deal with fatigue.  But, I talked to my nurse and doctor and they told me that research shows that low to moderate exercise can reduce fatigue – and that it can help during and after cancer treatments.  I learned that it's best to start an exercise program before the fatigue really sets in.  So, even in my small town, I found out that the local fitness center has a program designed for cancer patients to speed up the recovery process and also to reduce the fatigue of chemotherapy and radiation.  I went to a regular exercise program – and started swimming again, and it made me remember how much I used to love being in the water.  Now, I look forward to going to the gym, I do sleep better, and it has definitely decreased my level of fatigue.

Renee

I was feeling so tired, stressed, and worried all the time.  My girlfriend offered to go with me to her yoga center.  First, I talked to my doctor about whether or not I could do yoga.  He didn't know much about yoga, but he looked at the pictures in a yoga book I have, and marked "O.K." on the poses that he thought would be safe for me.  My nurse was already doing yoga, and she said to explain my situation to the instructor – what I could do and what I should avoid.  Between the yoga and the meditation that is sometimes part of the class, I think my stress levels have really improved.  And, I don't feel nearly as tired as I did before – and I feel so much stronger.

Emily (Oncology Nurse)

While we are on the subject of exercise, I can add that simple walking can help keep bones healthy and muscles strong.  Exercise can help people cope with other side effects like nausea, fatigue, constipation, and depression.  Being in an exercise program with other people offers social and emotional benefits, too.  Talk with your doctor or nurse and maybe consult with a physical therapist or fitness instructor who knows about fitness programs for people with cancer.  You can begin looking for an exercise program by calling local offices or exploring internet web sites of the American Cancer Society, the YWCA, and the Wellness Community.  These groups and organizations in your local communities can be contacted by phone. 

Carlos

I think my fatigue is related to lack of sleep.  I'd never thought too much about it, but in my "before cancer" life, I used to have several cups of coffee every day, and sometimes some tea at night while I watch the nightly news.  Well, those things, plus the stress that went along with my diagnosis and treatment, really messed up my sleeping.  I was having a talk with the nutritionist about my diet and just mentioned my sleep problem.  She asked about caffeine in my diet and suggested ways to reduce caffeine – drinking decaffeinated coffee and tea, drinking water instead of soft drinks, avoiding chocolate – especially later in the afternoon and during the evening.  I don't drink too much after dinner so that I don't have to get up to go to the bathroom during the night.  Almost every day, Tanesha and I go for walks down by the river or out on fairly easy hiking trails.  I think all of those things have helped me sleep better.

Emily (Oncology Nurse)

All of these things are helpful.  Doctors and nurses have begun to see that cancer-related fatigue is important, and many record and track levels of patients' fatigue at clinic visits.  Sorting through factors that can disturb your sleep patterns is a first step toward solving this problem.  Seeing a sleep specialist can be helpful to some people, too.

Rodney (Oncology Clinical Pharmacist)

Many of the drugs used to treat lymphoma decrease the number and function of red blood cells, white blood cells, and platelets.  We already talked about decreased white cells and the risk of infection.  But, fatigue sometimes relates to anemia caused by low levels of red blood cells.  Anemia caused by chemotherapy is sometimes treated with injections of colony stimulating factors to increase red cell production.  Other times, red cell transfusions are used to treat severe anemia.  Platelets are needed to form blood clots, and low platelet levels interfere with blood clotting and cause easy bruising and bleeding.  Protecting yourself from injury is an important aspect of self-care.  Avoid using aspirin or other medicines that can cause clotting problems unless they are prescribed by your doctor.  And, avoid activities that can result in bruises or bleeding, including body piercing, tattooing, contact sports, use of rectal thermometers, enemas, rectal suppositories, and anal sex.  Talk with your doctor and nurse about ways to protect yourself during times when your blood counts are low, and put a list of emergency contact numbers in a place that's easy to find.

Ari

There are so many things to think about, so many things that I need to do.  How can I keep it all straight?

Emily (Oncology Nurse)

For sure, having and being treated for lymphoma presents each of you with your own set of needs.  So, right up front I suggest that you ask for and keep copies of your hospital and clinic reports.  It is easy to put together a 3-ring binder or accordion file to help you organize your records.  You can also use one calendar to keep track of your appointments, and also to note if and when side effects occur.  A journal can help you keep track of how you are feeling, how long a symptom lasts, and what makes it better or worse.  A friend, son, daughter, or grandchild might be able to set up a system with a computer to help you keep track of appointments, note side effects, and get and keep your records in order.  It would give them a good way to help you, too. 

Once a treatment ends, it is important that you get a summary of your treatment so that your primary care provider and other specialists have the same information about your treatments that you do.  You may also be given a thorough plan for follow-up, or what we call a survivorship care plan or Prescription for Living.  This plan will be a guide for living beyond cancer.  I like to work with each patient to develop his or her survivorship care plan together – so that it is tailored to his or her unique and special needs.  It can include tips about safe exercise, healthy eating, stress reduction, and community resources.  It can also map out your schedule of doctor appointments, diagnostic tests, ways to deal with lingering problems from treatment, and describe how to assess new symptoms that may need attention.  Non-Hodgkin lymphoma may not always be curable, but there are many treatments available to help control the disease and improve the quality of your life.

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