Side Effects -- Managing Your Life on Chemotherapy - survivor Lillian Nail, PhD, RN, FAAN

Last Editorial Review: 10/23/2003

Because chemotherapy drugs attack healthy cells as well as cancerous cells, side effects are often a necessary evil. But you don't have to take them lying down. Oncology nursing expert and breast cancer survivor Lillian Nail, PhD, RN, FAAN, joined us to offer positive advice on the negative effects of chemo.

WebMD Live Events Transcript

The opinions expressed in this transcript are those of the health professional and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

Moderator: Welcome to WebMD University: "Alive & Well: Taking Charge of Your Breast Cancer Treatments." Our instructor today is Lillian Nail, PhD, RN, FAAN. Before we get to questions, you're familiar with the side effects of chemo, aren't you?

Nail: Oh yes, I've had chemo myself. I'm a breast cancer survivor and I've also had chemotherapy for lymphoma.

Moderator: What side effects did you experience? Which were the most disruptive for you? How did you deal with it?

Nail: The side effect that was most disruptive for me from chemotherapy was fatigue. I also periodically had pain that went along with a drug I was taking to manage another problem and that was a huge problem for me as well. The combination of the pain and fatigue really made it very difficult for me to manage my life the way I usually do. So I ended up making a lot of compromises like always having a car service meet me at the airport because I was too tired to go to the parking lot and I occasionally hurt too much to carry my luggage so I really needed help with those sorts of things. I also found that I had to cut back on the number of hours I worked in the evening because I was so tired that I couldn't concentrate. For me, fatigue and then the combination of the fatigue and pain were really the biggest problems.

Member: Since my chemo and radiation therapy I suffer from rigors (extreme chills), severe weakness, and elevated temperatures off and on. Most of the time they come all of a sudden and are not related to an infection and/or fever. Is this something to expect after having chemotherapy and radiation therapy?

Nail: This is a very unusual situation. And the best advice that we can give is that you really keep good track of what's happening and talk it over with your cancer care provider and primary care provider. It's not something that has shown up in our studies with women who are completing breast cancer treatment.

Member: I finished my chemo and rads fours months ago (adriamycin and Cytoxan). I am having a lot of after-chemo side effects. The one that really puzzles me is that after my husband and I make love his penis is burnt and raw. This lasts for about two to three weeks after sex. He will not wear a condom. Is there anything I can do?

Nail: I'm sure that must be quite distressing for both of you. This is also one that we have not heard about before and it probably doesn't have anything to do with your treatment. However, you may want to talk with your husband's primary care provider about lubricants because it sounds like an issue with friction.

Member: How long after chemotherapy does "chemo brain" last? How about the bitter aftertaste in my mouth after eating most foods? It has been almost three months since my last treatment, and I'm still experiencing both.

Nail: That's a great question. There are some people who tell us that they still feel like their memory, their ability to process information, and remembering words is a problem up to a year after the completion of chemo. We're not sure why this happens and there are several research groups around the country working on understanding the problem. In relation to the taste problem, there's very little information about it. Some people feel like their taste goes back to normal within a few months, and others tell us some foods still taste different up to several years after they've completed treatment. Sometimes people with taste changes experiment and find something that changes that sense of bitterness in their mouth. But it seems up to the individual to do the experimenting because there's no data on what works and what doesn't.

Moderator: Are there any dietary changes you can recommend that may help with taste changes? I've heard that tomato products tend to taste metallic.

Nail: The pattern really varies a lot between women. So it's important to keep track of what seems to taste good for you and what doesn't taste good, along with what makes it taste better and what makes it taste worse. Then you end up altering your diet so that you're avoiding things that make the situation worse and focusing on things that taste better to you. Sometimes people prefer to have things that have vinegar in them and there are other people that prefer food that has more sugar in it. This is an area where we really need more studies.

Moderator: So would a food journal help?

Nail: Sometimes keeping track of everything you eat and then rating it in terms of taste will help you figure out what works and what doesn't. The trick is the combination foods because you're not sure which part of the food is the part that tastes good or not so good. For example, I have a problem with anchovies so I have to avoid them even though they used to be my favorite pizza topping. At first I thought it was pizza, but it turns out it was anchovies. I only figured this out by comparing pizza slices with and without anchovies.

Moderator: Going back to the first part of the question. Is there anything that helps with "chemo brain" -- the memory loss associated with chemotherapy?

Nail: One of the challenges in dealing with the problem called chemo brain is that it has multiple parts. So there's the problem with memory which we usually advise people to write everything down to the point of putting Post-It Notes on the dashboard of the car so you know where you're going and why.

One other piece of it is problems processing information. For this one we usually suggest that people try not to make rapid decisions, but to stop and slow down when they feel like they're having trouble understanding things or trouble figuring things out, and work on concentration.

The third thing that people tell us is part of chemo brain is having trouble remembering words. For example, some women have told us that they knew they wanted to find the appliance that sucks the corn flakes off the carpet, but they could not retrieve the name of the appliance, vacuum cleaner, and tell someone what it was they were looking for. For that problem we usually suggest that people just describe the item. There are studies going on right now looking at specific exercises to help people regain memory processing and concentration and deal with the word search problem.

The same sorts of things are being done with children who've had cancer treatment. The preliminary results are quite promising and we're looking forward to hearing about the full studies.

Member: I completed chemo in March 2002. My hair has come back very curly and I never have had curly hair. Is this normal?

Nail: Another great question. This seems to be quite common. In addition, some people have told us that the curliness seems to go away, other people report that it seems to be here to stay. Some people tell us their hair has gotten thicker and darker as well. We don't know why and we don't know how and I'm actually working on a study so that we can at least find out how many people experience the curly hair and whether or not the curliness disappears.

Member: My wife recently finished six months of chemo; Cytoxan/adriamycin/5FU. Last week she stepped on a rock and twisted her ankle resulting in a small fracture of a bone on the outside of her right ankle where a ligament tore. Could this be a complication from the chemo causing bone-density loss?

Nail: There's a lot of interest in the effects of chemotherapy on bone density now. The data from the studies that are completed suggest that chemotherapy does cause bone loss and that the bone loss happens more rapidly and earlier than most people originally thought. We don't know who's at highest risk yet and it will always be difficult to tell when it's a small fracture that was associated with an injury, whether change in bone density contributed to it. This is often more difficult to think about because we don't have bone-density information about a lot of the women with breast cancer prior to chemotherapy. This would be a good one to talk with your healthcare providers about.

Member: I have completed chemo and radiation therapy for breast cancer but cannot bring myself to take tamoxifen for five years. I feel the effects would be devastating and I have barely recovered from the other treatments. They finished on July 2, 2002. On Sept. 30, I saw the oncologist who said the breast swelling due to fluid will leave in months and suggested a drug for hot flashes that is an antidepressant. I had to refuse. I wanted to know if doctors actually want to check for fatigue and if they can do anything for chemo-provoked menopause. I feel quite alone in my journey to health. I feel I have been poisoned and dumped and told to get better on my own. This entire treatment is a contradiction to health, I feel. I am told the body will build itself up, but surely if the body was doing a good job I wouldn't have gotten cancer in the first place. I also would appreciate if you could tell me if the chemo-provoked menopause is different from regular menopause.

Nail: We're gonna do the response to this in pieces. One of the things that's very confusing about cancer treatment is that we give a treatment that kills cancer cells but it kills normal cells. And it sounds to me like you were reflecting on the inherent contradiction in that idea. That's a really common issue that people talk about. Then, there's also the idea that somehow something happened in your body that betrayed you. That one usually goes along with the fear that it might happen again. And there's no magic thought or idea or way to comfort yourself about that that works for everyone, but people tell us that it helps to know that they're not the only one who has thought about this or felt the same way.

How to get healthier again: I'm actually a couch potato, so please understand that I'm not naturally an exerciser but exercise makes a huge difference. Exercise helps with fatigue, exercise helps with bone health, exercise improves mood. It makes people stronger and it makes them more confident. So we usually suggest that people who have completed cancer treatment and don't have any problems that would make it dangerous for them to exercise do all the things that are recommended to everyone, like eating a balanced diet with fruits and vegetables, getting enough rest, exercising, managing the stress in your life, and taking time out to smell the flowers.

What actually happened to my ovaries? Ovarian tissue consists of rapidly growing and dividing cells. Chemotherapy targets rapidly growing and dividing cells. So the effective chemotherapy that we use to treat cancer is what happens to ovarian tissue.

The question about whether chemotherapy-induced menopause is the same as natural menopause is a really interesting question. It's not the same process as natural menopause because it's a response to chemicals that have been added in, rather than a process that was under the control of the endocrine system in your body. But we don't know if it feels different. It probably happens more rapidly than natural menopause, but that may depend on where a woman was in the natural process when chemotherapy began.

Treating chemotherapy-induced menopause: Whether or not to treat chemotherapy-induced menopause is a really controversial issue. There are some people who use hormone replacement therapy, other people use phytoestrogen (soy), some use antidepressants. There are some medications that have been used for high blood pressure that have been used for hot flashes, as well. The controversy is in of course whether or not using hormone replacement will cause other problems or increase the probability of breast cancer recurrence. For many people this ends up being a very difficult judgment call and involves a lot of negotiation. For women with breast cancer, the range of options may depend on the specific characteristics of their own breast tumor. So this is one where a heart-to-heart talk with your healthcare providers about the impact of problems like hot flashes on your quality of life is appropriate. It's also a situation where a support group may help you sort out your own value system, ways to ask questions and get information, and in getting information about things that have been helpful for others who have the same problem.

In relation to fatigue, it usually improves dramatically in the first few months after cancer treatment is over. There are some women who continue to have fatigue for an extended period after cancer treatment. We don't know why that's happening, whom it's most likely to happen to, or how to manage that persistent fatigue. However, it has been recognized that this happens and the problem is now being studied. But there's not a firm answer yet.

Member: Are most women thrown into menopause directly after chemo?

Nail: That's a great question as well. Some woman stop having menstrual periods early in their chemotherapy. Others notice menopausal symptoms late in their chemotherapy. Some women do not experience menopause as a result of chemotherapy. And some women seem to have a temporary menopause and their periods start again months after their chemotherapy is over. Once again, we don't know how to predict ahead of time who will be in which one of these groups. And we don't know what it is that controls the variation in this process.

Member: Will modifying your diet help with the side effects of chemotherapy?

Nail: Sometimes people find it helpful to make changes in their diet if they have nausea or if they have problems with stomachache during chemotherapy. A lot of people talk about really preferring cold food, possibly because it doesn't have strong odors. Some people talk about avoiding spices and others tell us that they really prefer cold liquids at some points in their treatment. And it's OK to make changes in your food, even if your family and friends keep telling you that they're going to bring you something that used to be your favorite. I used to tell them that along with changing my hair, I was also changing what I ate for a while and a nice big bowl of vanilla ice cream was now a really good main course. I sometimes still have it as a main course.

Moderator: We are almost out of time. Do you have any final comments for us tonight?

Nail: Most of what we know about the experience of people receiving chemotherapy has come from studies that were generated when people like the folks here tonight asked a question. That's how we know what to ask in the next study. Thanks for all of your help. You've made a difference for the people that will come down this path after you.

Moderator: Our thanks to Lillian Nail, PhD, RN, FAAN, for joining us tonight. For more information on chemotherapy and other breast cancer issues, be sure to explore all of the breast cancer info here at WebMD, including our message boards and live chats.

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