Chemobrain: Chemotherapy Related Memory & Thinking Changes”
Speakers: Tim Ahles, PhD, Professor, Psychiatry, Program Director, Center for Psycho-Oncolgoy Research, Dartmouth-Hitchcock Medical Center; Robert J. Ferguson, PhD, Assistant Professor of Psychiatry, Dartmouth Medical School; Stewart Fleishman, MD, Director, Cancer Support Services, Beth Israel Cancer Center & Continuum Health Partners.
June 24, 2004
This Telephone Education Workshop will address:
|Definition & Causes of Chemobrain|
|Assessment of Memory & Thinking Changes|
|The Role of Neuropsychological Testing|
|Communicating with Your Healthcare Team About These Changes|
|The Role of Prescription Medication to Deal with Chemobrain|
|Practical Tips to Improve Attention, Concentration & Memory|
Living Beyond Breast Cancer
” Boosting Your Energy: Understanding How Chemotherapy
and Fatigue Affect Cognition”
Joyce O’Shaughnessy, MD, is a medical oncologist specializing in breast
cancer with Texas Oncology, PA, US Oncology at the Baylor-Sammons Cancer
Center. Lynn M. Schuchter, MD is an associate professor of medicine and
director of the clinical research unit at the Abramson Cancer Center of
the University of Pennsylvania.
March 24, 2004
OPERATOR : Good afternoon, and welcome to your Living Beyond Breast Cancer Teleconference. At this time all parties have been placed on a ‘listen only’ mode, and the floor will be open for questions following the presentation.
It is now my pleasure to turn the floor over to your host, Dr. Lynn Schuchter. Ma’am, the floor is yours.
DR. LYNN SCHUCHTER, ABRAMSON CANCER CENTER AT UNIVERSITY OF PENNSYLVANIA : Thank you. Good afternoon everyone, and welcome to our call. Today’s teleconference with Living Beyond Breast Cancer is going to focus on boosting your energy, understanding how chemotherapy and fatigue affect cognition. Cognition meaning, really, about how you’re thinking.
This program’s going to provide an overview of some of the latest research on areas of fatigue and anemia, and how your breast cancer treatment may affect your memory, your thinking and your ability to concentrate.
We’re going to focus today on some of the factors that influence these issues, including anemia and the impact of fatigue on your quality of life. And it is my pleasure today to have Dr. Joyce O’Shaughnessy with us today, and I’ll introduce her in a moment.
I need to give you a little bit of background information about myself and about Living Beyond Breast Cancer before we start today’s program.
I am a medical oncologist. I’m at the University of Pennsylvania and it’s my pleasure to be on the board of directors for Living Beyond Breast Cancer. And this organization provides an array of educational programs for women and families affected by breast cancer, and in 2004 we look forward to many more teleconferences, which I think is a great way of providing state-of-the-art information to a number of people.
There is a Survivors’ Helpline, and this is staffed by trained volunteers who are themselves survivors, and so this is available. There is a toll-free telephone number I’ll give you now, and that’s 888-753-5222 , and that is a toll-free Survivors’ Helpline, if you have any additional questions or issues come up in the future.
I just want to tell you about some upcoming dates for programs that Living Beyond Breast Cancer is sponsoring. The Spring Educational Conference is going to be held on Saturday, April 24th , and the topic is going to be ‘Breast Cancer Genetics, What You and Your Family Need To Know’. And, if you check the Living Beyond Breast Cancer website, which is http://lbbc.org you’ll get additional information about the program and how to register. And the next teleconference for Living Beyond Breast Cancer will be on May 12th , and that is going to be ‘Understanding the Role of Aromatase Inhibitors’, and our speaker on that day will be Dr. Robert Carlson. This is, obviously, a really important topic to cover as well.
Then, on June 22nd , the Living Beyond Breast Cancer will present their annual teleconference, and this is a report on the latest research findings from our big oncology meeting, which is the American Society of Clinical Oncology and Dr. Kim Blackwell, of Duke University, a breast cancer expert, will be the speaker for that program.
So, for today’s program, I want to thank Ortho Biotech http://www.orthobiotech.com for the unrestricted educational grant that made this program possible, and now it is my pleasure to really welcome Dr. Joyce O’Shaughnessy. Dr. O’Shaughnessy, I’ve known Joyce since she was a fellow and I was a fellow. She is a medical oncologist specializing in breast cancer. She was at the Texas Oncology, U.S. Oncology at the Baylor Sammons Cancer Center in Dallas. She is the co-chair of the Breast Cancer Research and chair of the Cancer Prevention Research Committees for U.S. Oncology clinical trials and network, and this is a really important organization that has done very important clinical research trials, sort of asking the most, some of the most important questions about optimum treatment for women with early stage breast cancer, and also with more advanced breast cancer. And she has been a driving force in really innovative clinical research on breast cancer in this country and internationally. And Joyce is going to give us an overview 15 minute presentation, and then we always find that the questions and answers are really so important to these conferences, and you all ask such interesting and important questions. So, we’ll do a short overview about the topic of energy, anemia, fatigue, and then we’ll open it up to questions. So Joyce, I’ll turn the time over to you.
DR. JOYCE O’SHAUGHNESSY, US ONCOLOGY; BAYLOR-SAMMONS CANCER CENTER: Thank you Lynn. My pleasure to be working with you on this, and thank you Elyse, as well, for inviting me, and good morning, good afternoon everybody on the line. Thanks for calling in. It’s neat how you can get several hundred folks on the phone pretty easily with this. So, as Lynn said, I’ll give a fifteen-minute overview and maybe that will just mainly give a bit of an overview and then have time to delve a bit more deeply with questions.
So, what I’m going to focus on is how chemotherapy can affect both fatigue and cognition. As Lynn said, cognition is our mental processing, our thinking, and our usual facility to multi-task and problem solve and use short-term memory, and to direct attention to things. Now, mainly what I will focus on is adjuvant chemotherapy, given after original breast surgery, although, and that’s because most of the studies on cognition and chemotherapy have been done with early breast cancer, however, there is no doubt that the chemotherapy that we give for metastatic breast cancer, you know, can profoundly affect fatigue and cognition for the simple reason that the chemotherapy for metastatic breast cancer tends to go on for a longer period of time. And, as you know, women with metastatic breast cancer, you know generally, at some point in their disease, may need several years of chemotherapy. So, certainly, there are effects on fatigue and cognition.
Now, before I talk about chemo, I will say that it’s not only chemotherapy that can cause fatigue and affect cognition as we are treating breast cancer. Our hormonal therapies can, which are anti-estrogens, profoundly affect the hormonal milieu of women, and cause menopausal symptoms, which include a lot of insomnia, sometimes, which leads to fatigue. And there’s no doubt that, when we’re tired, our brains don’t work as well.
There is, as of yet, no really terrific evidence that hormonal therapies, tamoxifen or the aromatase inhibitors, directly impact on cognition in the brain, i.e., get in the way of our mental functioning outside of the, sort of, menopausal symptoms and fatigue that it causes. However, it’s very early in the research, and that may be something we want to return to in the discussion period. So, I wanted to at least acknowledge this, not just chemotherapy that can lead to fatigue and changes in cognition. Hormonal therapy can as well, although it may be indirect.
So, then turning then to chemotherapy for breast cancer, focusing on adjuvant chemotherapy, let’s talk first about cognition. And, I think the thing that I feel about this situation is that; we are very early in the research on chemotherapy and effects of chemotherapy on the brain. And there are really no very good large trials of adjuvant chemotherapy and effects on the brain, and most of the studies have really just looked at brain functioning after adjuvant chemotherapy in one point in time. In other words, most of the studies did not look at women’s brain functioning and cognition before they received chemotherapy, and then compared it to any changes that occurred after chemotherapy. What they did is, they just simply did cognitive assessments, standardized neuropsychological testing after chemotherapy in women who got chemotherapy, and compared it to breast cancer patients who may have only received hormonal therapy or to women who had not had breast cancer. Then they did these studies. If you will look at the literature across the board, what comes out is that about 15% or so, perhaps up to 20% of women who’ve had adjuvant chemotherapy for breast cancer score with either some moderate or severe cognitive dysfunction, as compared to generally, around 5 to 8% of women who have not had chemotherapy. So, there does seem to be, in the literature, from early preliminary findings, the suggestion that, based on the neuropsychological assessment tools that have been used, which are usually broad panels of neuropsychological testing that take three to four hours to give, so pretty intensive, but there seems to be maybe about, maybe 10 or 15% more of a chance at having some moderate or severe cognitive dysfunction after adjuvant chemotherapy.
Now, most of these have been, as I said, one slice in time. You know, done a year or two after women have finished up chemotherapy. There was one study from Dartmouth by Dr. Ahles, whose point in time was five years after finishing up adjuvant chemotherapy, and he showed that it persisted. That he found that there was still this 15 to 20% of patients who had cognitive dysfunction. Now, there was more encouraging data out of the Netherlands. This group in the Netherlands has been really in the forefront of this research on the brain following adjuvant breast cancer chemotherapy, and in two years, one to two years after chemotherapy, they had found about 15 to 20% of patients with cognitive dysfunction. But, then they went ahead and did it again two years later, so it was about the four-year mark, four years after adjuvant chemotherapy, and they saw improvement in about half of the women. So, that was encouraging. Now, we’re talking very small numbers, however, so, this is truly, truly very, very early.
What kind of cognitive changes are we talking about here? We’re talking about, a lot of times, word finding; word fluency; some problems with short-term memory. Attention, directing attention and focused tasks, and what we call executive function, which is a very important, integrative task of our frontal lobes that multi-tasks, when we’re trying to do many balls in the air. We’re trying to do simple tasks, string it together into more complex behaviors, and we’re multitasking. We’re trying to monitor how we’re doing, measure our progress, plan, all simultaneously, the stuff we have to do on a daily basis. Very important to women’s lives, trying to manage home, family, work, etc. So, that’s what we’re talking about here.
In terms of interventions, we are extremely early here. What the research has mainly focused on, so far, is trying to intervene and trying to see whether or not we have any promising leads, where we might be able to treat women with things that might protect their brains while they’re going through chemotherapy, to see if we could lessen the chances of developing what may be this cognitive dysfunction.
And, some of the things that have been looked at, here, we did a clinical trial ourselves of, interestingly, erythropoietin otherwise known as Epo. And, erythropoietin is a red blood cell booster. It’s an injection, a subcutaneous injection under the skin that’s given either weekly or, now they have more novel schedules where you can give it even every two to three weeks, in patients. And we know it very well as two different drugs. One is called Procrit and there’s another one called Aranesp, and these are both injections under the skin, and we use them all the time for people that are getting chemotherapy, to treat anemia, or prevent anemia, that occurs commonly with chemotherapy, because it boosts up the red blood cells. And, of course, we use it to prevent anemia and to prevent women from getting fatigued, or to treat their fatigue, if they have gotten fatigued.
And, interestingly, it’s quite clear that erythropoietin is a protector of the brain. It’s one of our bodies’ indigenous, andoginous ways of protecting our brain when our brains are assaulted. For example, we’re beginning to have a stroke, or we’ve been in a car accident, we’re loosing a lot of blood. The brain, the brain itself, boosts up the production of erythropoietin, and it makes it more difficult for the brain cells to die. It raises the threshold at which the lack of oxygen getting to the brain has to get to before the neurons die off. It’s a fabulous piece of work, and it’s absolutely conclusive.
And so, we conducted a clinical trial in women with early breast cancer who are receiving adjuvant chemotherapy, and most of them are receiving Adriamycin and Cytoxan chemotherapy (AC), and some were receiving a taxane, Taxol, or Taxotere, along with the AC, and we had a hundred patients, and we randomly assigned them. Half got, believe it or not the women agreed to get placebo injections. We felt that we had to do this in a blinded fashion, versus the erythropoietin. In this particular case we were using Procrit and we were giving the Procrit weekly, as it is most standardly given. And these women, interestingly, were not anemic. We were doing this from the beginning of their chemotherapy. We were cautious. We didn’t want to give the Procrit if their hemoglobin was getting above 12, because we feel that that’s good enough. You don’t want to be pushing it too high. But, you know, if it were below 12 or at 12, we would give them the placebo versus Procrit and they were randomly assigned, and what we did in our studies, we actually did measure the cognitive function before they started the chemotherapy, and then we measured the cognitive function again right before they finished up their chemotherapy, and then again six months later.
And what we showed, when we compared the changes in cognition, between base-line and right before the last cycle of chemotherapy, was that the women who had gotten the Procrit, compared to the placebo, fewer women had a significant change in their cognition scores on the testing. So, we did feel that there was a trend, again, this was a small study, we thought there was a trend. We thought there was a signal that, perhaps, there was something potentially beneficial about giving erythropoietin from the get-go of chemotherapy. Now, interestingly, when we looked at the six-month data, however, interestingly that did not hold up. We didn’t see a big difference between the erythropoietin, the Procrit and the placebo at six months.
But, we feel that there may have been some reasons for that, the main one being that we only gave the Procrit versus the placebo during the initial chemotherapy, during the Adriamycin part of the, AC part of the chemotherapy, and then some of the women went on, as I mentioned, to get Taxol or Taxotere afterwards. And we stopped the study at that point, and some of the women who not been getting the erythropoietin, the Procrit, they were getting the placebo; their doctors went on to give them the Procrit afterwards, when they were still getting more chemotherapy.
So, we felt that some of the six month results may not have been as reliable because we weren’t really, the patients were not still in the study on the Procrit versus placebo at that time. So, this was what we really call a ‘pilot’ study. This was a preliminary study with the purpose being to see whether there was any signal there. That there might be some reason to go forward with additional studies. And we felt that there was. We felt that there was some promise there, and so then we went ahead and launched a larger trial to study the effects further.
So, there’s early interest there, but, honestly it certainly is something that I could certainly not recommend to a patient in my own practice, that we start the Procrit right from the get-go of chemotherapy. The way that it is utilized in the standard of care, is to utilize the Procrit if a woman begins to develop anemia. What I do there is, I don’t wait for the woman to get profoundly anemic to start the Procrit or the Aranesp. What I do is, if she starts to dip down with the hemoglobin under 12, getting towards 11, then I go ahead and I start the Procrit proactively, hope, knowing that I’ll help her anemia, knowing that I’ll help her fatigue, and hoping that I might protect the brain to some extent, although, that really is hypothetical.
One other point on this cognition I want to make is that there are a lot of confounding variables on the cognition. When we use chemotherapy and we put women into menopause early, or they stop their estrogen therapy because they’re post menopausal and now they’re getting hot flashes at night, they’re not sleeping, they’re tired. There are a lot of things we have to consider, but it may not be chemotherapy directly having a toxic effect on the brain, but there may be other, secondary things going on with the chemotherapy. So, we have to bear that in mind. This is truly a field in its infancy.
DR. LYNN SCHUCHTER : Joyce, do you have any other, you know, one or two comments you want to make before we open it up to comments, questions?
DR. JOYCE O’SHAUGHNESSY : Sure. One other point I’ll make. We all know that chemotherapy can cause fatigue, either directly, because of toxic effects on the body, or because of anemia. There’s an interesting potential association between changes in cognition and fatigue. In elderly patients who are pretty healthy, normal, older retirees, when you study that population, and study serially, their cognitive functions over the years, what Dr. Royall, Don Royall has shown, is that, in the proportion of folks, older folks, not everybody of course, but in the proportion of older folks, where you do see a decline in cognition over the years, you see, interestingly, an increase in fatigue in those patients, in those people. And Dr. Royall has come up with a hypothesis that sometimes, you know, changes in cognition that is due to, you know, some deteriorating in brain functioning, particularly in the frontal lobes with aging, can result in the fatigue, or contribute to the fatigue, that folks see as they get older. So, that’s one of the interesting things we’re looking at in these studies we’re doing on cognition, is whether or not there’s any relationship between changes in cognition with chemotherapy and the development of fatigue, and see, we’re quite interested in that because approaches such as using erythropoietin can certainly help prevent anemia, improve fatigue, and hopefully, possibly, might be able to protect the brain, although that is still really experimental at this time.
So, I’ll stop there Lynn.
DR. LYNN SCHUCHTER : OK. Great. JT, if you could open this up for questions now, and we ask that people be fairly brief in, sort of, the background, so that we can get as many calls on the line as possible in the time we have left.
OPERATOR : Thank you. Ladies and gentlemen, the floor is open for questions. If you do have a question, please press the numbers ‘1′ followed by ‘4′ on your telephone keypad. Questions will be answered in the order they are received, and we do ask that, while posing your question, you pick up your handset to provide optimum sound quality. Once again ladies and gentlemen, if you do have a question, please press the numbers ‘1′ followed by ‘4′ on your telephone keypad.
Our first question is coming from New York. Your line is live.
DR. LYNN SCHUCHTER : Go ahead please.
CALLER : Hello. Thank you very much. This is very interesting. I have some questions about fatigue related to the chemo. For months ago I completed the ACT protocol and suffered enormous fatigue during the actual chemotherapy, which took, which went over a period of four months. And it is now, as I said, four months later and the fatigue is better, but it’s still quite crippling, and I wondered if this is, there’s anything that can be done about it at this point, how long I can expect it to last. I am on Arimidex as well. Can that, kind of, contribute to the fatigue? Any information would be very much appreciated. And are there any other ways to deal with it?
DR. LYNN SCHUCHTER : Great. Go ahead Joyce.
DR. JOYCE O’SHAUGHNESSY : Rita, how old are you?
CALLER : Sixty-one.
DR. JOYCE O’SHAUGHNESSY : Sixty-one. Were you on estrogen or hormone replacement therapy before you were diagnosed with breast cancer?
CALLER : I was not.
DR. JOYCE O’SHAUGHNESSY : You were not. The chemotherapy that you got, that included the Taxotere, the Taxotere chemo that you got is one of our more aggressive chemos, I do know, and is very fatiguing. There’s no doubt about it. I believe it’s profoundly fatiguing. It’s also highly effective, thank goodness, but it’s also profoundly fatiguing. I tell women, Rita, that, I tell them that it may take up to a year to fully have the body recover from our aggressive chemotherapies, such as Taxotere. So, that’s the first thing I tell women, is that it just simply takes up to a year. Some women, maybe nine months, but, I say up to a year. Now, in addition, the use of the Arimidex, which is a profound anti-estrogen, also extremely effective medication, but it’s profoundly anti-estrogenic, no doubt, can cause some fatigue as well, and particularly if it’s associated with menopausal symptoms, with hot flashes, and women are not getting a good night’s sleep. That’s one of the most important things to look at. There’s no way possible to feel anything but fatigued unless you’re getting a good night’s sleep. So that’s one of the first things I ask women. Are you sleeping?
CALLER : Not very well.
DR. JOYCE O’SHAUGHNESSY : This is extremely important. Personally, I tell women I’ve got a secret weapon. I utilize Trazodone. It’s an old-fashioned anti-depressant. We don’t use it for depression anymore. It is not addicting and you take a pill at night, and you get wonderful sleep, and, you know, after about a year you can try to stop it and see if you need it anymore, but, we can’t underestimate that these strong anti-estrogens lead to menopausal symptoms, one of which causes insomnia. Whether or not there’s hot flashes there during the night, insomnia’s one of our key menopausal symptoms. And so, I take the sleep deprivation extremely seriously. You can’t fight fatigue unless you’re getting a good night’s sleep. So, I am a strong advocate. There’s no hangover effect. No hangover effect from the Trazodone. I don’t like sleeping pills. I don’t use them because I feel there’s a slight dependency that could happen there. I don’t want to give that to anybody. So, that’s important.
The other things I think that are critical are things like trying to be as active as possible, in terms of, I think that aerobics, aerobic, a good vigorous walking, swimming, cycling, etc. I believe that energy begets energy. I do believe that there’s some very good energy that can come from some moderate exercise. Twenty minutes, twenty, thirty minutes, four approximate, times a week. I believe that there’s energy that comes from good, healthy, lean eating. I’ve seen women get beautiful energy boosts with careful attention to diet. I don’t know whether you have any weight to loose right after the chemotherapy. Most women do.
CALLER : No, I don’t.
DR. JOYCE O’SHAUGHNESSY : You don’t? Well, that’s wonderful. Most women do, and I find that really careful attention to helping eating, avoiding large sugar loads with large insulin levels going up, and then only to have plummeting, which can make people feel very fatigued, I think, is important. The other thing is that sometimes women suffer from joint pain on Arimidex, and the low-grade pain can drag you down. And so, I don’t think we can really fight fatigue if women are fighting pain. Are you having pain from your joints with the Arimidex?
CALLER : No, I’m not.
DR. JOYCE O’SHAUGHNESSY : Good. Good. A lot of times, women in their sixties do not, actually, so that’s great. That’s another thing for women who are on aromatase inhibitors and who do have pain. I’m an advocate of the non-steroidal, such as Celebrex or Vioxx that would protect the stomach. Just a low dose once a day can make a big difference in how women feel.
Those are the main things.
DR. LYNN SCHUCHTER : And I would just add that, some of the chemotherapy that women receive, and you’ve got, I think, Taxol, you get Decadron, which is a steroid, and that can contribute to your muscles getting weak, particularly trying to climb stairs or get out of a chair, so, I think the idea of really trying to exercise and walking is important, and I agree completely with Joyce that we really tell patients that it takes a good year to recover from all that you’ve been through, including the surgery, maybe there’s been radiation, there’s been anesthesia, there’s been chemotherapy, and it really does take a full year to get back to yourself. And I think, Joyce, those are really good tips in terms of getting energy back. And the stiffness associated with Arimidex, some patients have said swimming and yoga can really make a difference.
Why don’t we then move on to the next call?
OPERATOR : Thank you. Our next question is coming from New Jersey. Your line is live.
DR. LYNN SCHUCHTER : Go ahead please.
CALLER : OK. This may be a difficult question to answer. In an aggressive breast cancer that had multiple lymph node involvement and seven months of chemo, aggressive chemo followed by six weeks of radiation, a four month remission, and then metastasized to the liver and bone, treated by Xeloda for four months, and then CT scan showing more metastasis, so started Navelbine, plus a bone drip. And the discomfort is enough, now, to, for the person to take Duragesic patches. How will these patches affect fatigue and cognition?
DR. JOYCE O’SHAUGHNESSY : Usually, I find that the patches are quite gentle. I find that the beauty of the patches, or the long acting narcotic preparations of the morphine, I like the MS-Contin or the Oxycontin, I find them gentle because they don’t give you the big peaks. You know, if you take a pill like Hydrocodone or Dilaudid, or even a morphine pill, you get a peak in a narcotic, and then you get a plummeting of it, and, you know, that’s difficult. That’s more difficult to take. I find that the patches are quite gentle. They give a low level of narcotic that’s not an up and down phenomenon. So, initially when you start the Duragesic patches or any of these long-acting preparations, you can feel tired. And any time you increase the dose of the patches you could feel tired, usually for about three or four days, maybe up to a week. But then the patient accommodates to it, and they’re not tired, and usually in fact, they feel better. Because unless you get pain under control, and discomfort, you’re going to just feel very lousy and very tired. So, you must get the pain under control
There are things we try if a person does feel fatigue with narcotics. We can use, there’s a couple of things, there’s several. There’s a caffeine pill preparation over the counter called Lucidex that we try. We can try a controlled substance, low dose Ritalin, once or twice a day. They’ve a long acting preparation called Concerta.
CALLER : Those probably cause palpitations, right?
DR. JOYCE O’SHAUGHNESSY : Low dose, you can usually get away with it, but higher doses they could, but not necessarily. And then there’s a newer drug called Provigil, which is a once a day pill, which generally does not cause palpitations. They don’t know exactly how it works, but it’s used to prevent narcolepsy, this rare disorder where people sleep all the time, and it can be very helpful for people, in terms of fighting fatigue induced by narcotics. We generally tend to use the Ritalin and the Provigil only for folks who, that have metastatic disease, and who do require ongoing, prolonged chemotherapy. Occasionally we’ll use these things in the adjuvant setting for a person who needs six months of chemotherapy, which is a long time, and who really cannot function with the adjuvant chemotherapy because of severe fatigue, which is not common, but happens occasionally. So we can use the Ritalin or the Provigil for that as well.
Now, the other thing I think is very important is, and this goes, I believe, I used this technique during chemotherapy, adjuvantly, and certainly use it frequently, if not ubiquitously, during metastatic chemotherapy, is one of the selective serotonin reuptake inhibitors. Your body, your brain gets just drained…
CALLER : She’s on Zoloft, so…
DR. JOYCE O’SHAUGHNESSY : Good, good. Zoloft, and Effexor are slightly stimulating, and I use those quite a bit. Lexipro, Prozac, are sort of moderate. They don’t generally, they’re not usually stimulating nor sedating at all. But I find that they may make people feel a bit better. They can give people energy. So, I’m a believer in Zoloft. I’m a believer in Zoloft and so, but generally, the Duragesic is not terribly fatiguing.
OPERATOR : Thank you. Your next question is coming from Pennsylvania. Your line is live.
CALLER : Yes, hi. I find myself experiencing the word retrieval problem, and the inability to multi-task, and I usually comment that ‘now I know what it’s like to think like a man’. I’m wondering if, on a more serious note, is it possible to re-educate our pattern of behavior? They seem to do fine with that.
DR. JOYCE O’SHAUGHNESSY : Interesting. You know, there’s early, I think the answer may be ‘yes’. You know, it’s hard, I think to sort this out, ‘cause I’m sitting here thinking, and I’m 47 and I have that too, you know, and have you had chemotherapy?
CALLER : I’m on my second round. I have inflammatory breast cancer, so I had Taxotere and Adriamycin, then I had my surgery, and now I’m on CMF.
DR. JOYCE O’SHAUGHNESSY : CMF.
CALLER : So, second go-round.
DR. JOYCE O’SHAUGHNESSY : Yes, and there’s no doubt. There’s no doubt, that during the chemotherapy, there’s no doubt that that becomes more pronounced, actually. There’s no doubt. Now, that does not necessarily mean that it will persist after the chemotherapy, but during chemotherapy, I distinguish chemo-brain, which I sort of think of as a more prolonged situation from chemo-fog, which I feel is a very, very, very common thing that happens during the chemotherapy, with some word finding, and some, a little bit more difficulty focusing and multi-tasking. I, there are, the neuropsychologists, the professionals, have all kinds of retraining techniques, exercises, mental exercises, that are proven to re-engineer the brain, and to utilize the parts of the brain that need a little additional exercise to get them on track again.
You know, I read, with great interest, an article recently about patients, profound stroke victim patients, who basically, they’d given, you know, even now, give them a little physical therapy, gee, they might make a little bit of progress, but unfortunately be left with a large deficit. Recent data suggests that incredibly intensive physical therapy, utilizing those muscles, utilizing those muscles that can’t move, interestingly, in some patients, can retrain the brain. I don’t know what it’s doing. What they suggested is, it’s making new neuro-connections in the brain to compensate for this big loss in the brain where some neurons have died. I thought it was fascinating. And so, yes, I’m a believer that we can utilize some of these neuropsychological techniques and I believe that women should, if they have deficits that persist, they should seek neuropsychological consultation.
I did a literature search before I got on the phone today, to see what I could find that was new out there, and I found this very interesting abstract in a nursing journal that I’ll share with you, talking about utilizing exposure to natural environments to try to, it said ‘An Environmental Intervention to Restore Attention in Women With Newly Diagnosed Breast Cancer’. I did not pull the article, because I didn’t have time, but it’s in the journal called Cancer Nursing in the Year 2003 , August 2003, Volume 26, pages 284 to 292, and it’s from the University of Michigan, which is a very good university, and the first author is Cimprich, first initial ‘B’. And their e-mail address is firstname.lastname@example.org . And they’re talking about doing an intervention in women to help them direct attention by exposing them to the natural environment. It’s fascinating.
DR. LYNN SCHUCHTER : Elyse, maybe we can look into that? And we can read it and then see if it’s something that we can actually send around to give a follow-up.
DR. JOYCE O’SHAUGHNESSY : So, anyway, yes. I think that we can. I’m a believer. We can re-educate our brains. If people do have some deficits that persist from chemotherapy, either because of chemotherapy itself, or hormonal changes, or the need to take additional anti-estrogens, or what have you? There are multi factors here. I believe we can and I believe, for most patients, for most patients, in my own practice, 80 to 90%, I think people pretty much go back to normal. Of course, you know, we’re all getting older, you know what I mean? And there are some things that just happen naturally.
CALLER : God willing, we’re all getting older.
DR. JOYCE O’SHAUGHNESSY : Exactly, exactly, exactly. So, this is a multi-factoral process, I think, for 80 – 90% of patients. It isn’t truly a remaining issue, but, you know, I think if you closely question women, closely question them, women will tell you that there are some subtle, lasting changes after chemotherapy, but it is difficult to sort out because, as I said, there are multiple factors there, but, I personally would, if I felt, I would seek neuropsychological consultation from the experts, and consider undergoing some testing, see where I might have a few deficits, and then I would say “Give me some exercises, doctor, so I can utilize them to build up, to use my brain as a muscle, and to try to build up that part of my brain again’.
CALLER : I did consider taking up, like, reading math books and having math, just to make my brain work.
DR. JOYCE O’SHAUGHNESSY : Yes.
CALLER : Just to make it work. I don’t know if it’s, I’m using the same side or not, as I would with language retrieval, but I just felt like, I’m going numb here, so…
DR. LYNN SCHUCHTER : But, be encouraged, as Joyce said that it’s definitely worse during the active phase of chemotherapy, and you’ll get a lot back once you finish your treatment.
DR. JOYCE O’SHAUGHNESSY : I’ll give you an anecdote on that. My research nurse had breast cancer twice, and we were working together day in and day out, you know, and multi-tasking is a big, big, big, big part of research nurses. And it was during her chemotherapy. It took her the first two weeks. It was very difficult for her to focus and multi-task, but then by the third week when she was getting ready for the next round of chemotherapy, it would actually improve. Fortunately I can tell you that she’s, again, getting back to your point, with the utilization, she’s been working again as a researcher for many years, doing great. Utilizing it, she’s right back in the saddle, basically. So, again, I do believe that utilizing and stretching that brain is very important.
CALLER : Thank you. I’ll try to remember that.
DR. LYNN SCHUCHTER : OK. We’ll take the next call, thanks.
OPERATOR : Thank you. Our next question is coming from Washington. Your line is live.
CALLER : Yes. My question is about sudden energy drops. I’ve done a pretty good job, I think, given my situation. I’ve been on weekly Adriamycin for almost two years now. But just lately I’ve been finding it, like, I was at the hospital for an Epo shot, and just all of a sudden I had to sit down, and that’s been happening more lately.
DR. JOYCE O’SHAUGHNESSY : Hmm. You know, that is, it’s wonderful, wonderful to hear, you know, the success that weekly Adriamycin has had for you. I’ve made a mental note to consider that for my own patients more.
CALLER : With plenty of Zinecard.
DR. JOYCE O’SHAUGHNESSY : With plenty of Zinecard. Terrific. That, as you well know, that’s a lot of chemotherapy, you know, for a body to go through. And I’m glad you’re getting the Epo, because obviously you want to try to – is it working – are you anemic?
CALLER : Well, I’ve been hovering like, maybe 32, 33. At the moment it’s 29.8 for my hematocrit.
DR. JOYCE O’SHAUGHNESSY : And that, you know, 32, 33, you know, certainly is very reasonable. When you get down to 29, I think that’s understandable that you might have those sudden bouts of fatigue, and you certainly want to be taking some slow say – some iron, some iron and some multi-vitamins to make sure that the Epo has all the nutrients it needs to work most effectively. I think that one of the things you want to talk to your doctor about, I think, for sure, is I would want to make sure your thyroid was looked at, with the question, as Lynn pointed out is, sometimes, I don’t know whether you’ve been getting any steroids or not as a pre-medication. Have you been taking any?
CALLER : No. They were making me feel sick and we worked our way down to none.
DR. JOYCE O’SHAUGHNESSY : To none. That’s good. It might still be reasonable for you to have your adrenal axis looked at to make sure your own body is still being able to produce enough steroids. There’s a simple test called the Cortrosyn Stim test that can be done, to make sure that your adrenals are putting out enough steroids. And, I think I’d probably want to look at your blood pressure too. I’d want to get your blood pressure lying down, sitting up and standing, and to make sure that you weren’t having sudden drops in your blood pressure, only because of; this is a lot of chemo that you’ve been getting. Obviously, I’m sure your doctor’s keeping a close eye on your heart, you know, with the Adriamycin, ‘cause you want to be sure that your heart’s just doing fine, probably is, but want to be sure of that too. So, some things you definitely want to think about there, just going down the list of potential things. And the only other thing, if all that comes out fine, the only other thing I would say is there’s no doubt, with a long duration of chemotherapy, you can’t, the body can’t help but have some effects on that. It might be akin to a person who’d been very active all of a sudden being forced to be sedentary for a year. We’re going to have some evidence of debilitation. And the way around that is some exercises to build up your muscles. The stronger your muscles are, the less likely they are to accumulate blood and to suddenly drain the blood out of your bloodstream, and have you had some sudden weakness. So, stronger muscles can combat what you’re going through, potentially. So, that would be another thing to think about. There’s some conditioning. So, you have to kind of approach that as a multi-pronged approach. But I definitely would want, at least, to look at you, like I said, from a thyroid standpoint, and adrenal standpoint, blood pressure, making sure the heart is OK. And then, if everything comes out there, think about some conditioning and try, you know, sometimes we can increase a dose of the Epo. Increase the dose of it and see if we can get your hematocrit closer up there to the 32, 33 range, you know, than a 29.
Any other thoughts here Lynn?
DR. LYNN SCHUCHTER : No, I think you’ve really covered it. You’re still an excellent internist.
DR. JOYCE O’SHAUGHNESSY : Good.
DR. LYNN SCHUCHTER : I hope that’s helpful.
CALLER : Thank you very much.
OPERATOR : Thank you. Our next question is coming from New Mexico. Your line is live.
CALLER : This is fascinating. Thank you so much. I’ve been on chemotherapy for almost four years now. And right now, I’m getting, I’m on aromatase, my cancer is hormonal. I’m on aromatase inhibitors, and, by the way, I was diagnosed with stage 4. It’s metastasized into my bones. I’m receiving Zometa and Herceptin, and my oncologist has me taking four Celebrex a day, and I’m on Aromasin. And, of the stuff that you’ve been saying about cognition and difficulty sleeping really, really hits me, ‘cause I’m having problems with both and I’m a retired academic, so you can imagine what that’s like for me. So, you know any other suggestions that you have for me. The fatigue, yes, definitely. I have real difficulty sleeping, and the only thing I have that helps me sleep is Ambien, which I’m very hesitant to take daily, because I understand that after a while it stops working.
DR. JOYCE O’SHAUGHNESSY : I don’t know if you’ve tried Trazodone. That’s my secret weapon. I love that thing. You know, I’ll tell you something, women write me thank you notes for Trazodone. Honest to God, it’s one of the things I give women that I’m most gratified about. It really makes a difference.
CALLER : Is that a prescription…
DR. JOYCE O’SHAUGHNESSY : It is, it is. It’s a beautiful drug. And, we start off at half a tab. Each tab is 50 milligrams. You cut it in half. I tell you, when you cut it in half, take it nightly for five nights. That’ll do nothing for you. Then you go to 50 milligrams. It takes three weeks to work, and the dose it works for women is between 50, 100 or 150. So, you do have to be willing to push the dose. It does not have a hangover effect. It does not have, I never get any complaints about side effects. It’s a great drug. So, I really would recommend that to you. I want to make another point to the gal, Grace. You know, and also gals like you that are on more prolonged therapies, these are the situations where I would consider low dose Ritalin. Grace, if your fatigue doesn’t go away, and you keep having these bouts, you know, you’ve been on chemo a long time now, you know, this is where I might use a little low dose Ritalin or consider Provigil. Other supplements, Zoloft, Effexor are both stimulating. Interestingly, Dr. Don Royall, who’s an expert in executive function, cognitive function. He tells me that Zoloft improves executive function. So, I don’t hesitate to use these things, you know, to try to help people have more energy and feel sharper.
CALLER : My last question. What do you think about my taking two Celebrex, two times a day? I don’t know of anyone else who is on that.
DR. JOYCE O’SHAUGHNESSY : So, you’re taking probably 400 milligrams twice a day, I’d suspect.
CALLER : Yes.
DR. JOYCE O’SHAUGHNESSY : That’s the dose that’s approved by the FDA to treat colon polyps in families that have their colons carpeted by colon polyps. They’re not just your regular old colon polyps, but we’re talking about these families that have just a genetic problem with competing of their colon and high risk for colon cancer. So, that is a dose that is approved by the FDA. I don’t personally have a lot of experience with it, but it is an approved dose.
CALLER : But for bone metastasis?
DR. JOYCE O’SHAUGHNESSY : It’s actually – probably your oncologist is using it because there’s some evidence that the Celebrex can reduce the production of aromatase.
CALLER : OK.
DR. JOYCE O’SHAUGHNESSY : But it’s still on the theoretic end. That’s still on the theoretical end of things. I personally just generally stay with about 200 twice a day is what I usually do. But however, having said that, there is safety there on the higher dose that your oncologist is using.
CALLER : OK.
DR. LYNN SCHUCHTER : And I would just add that, I mean, yours was a good example of someone on a lot of different medications for a long time, and making it sometimes hard to sort out where the thinking comes from.
CALLER : That’s true, yeah.
DR. LYNN SCHUCHTER : And so, just going to the doctor that frequently, even if you aren’t getting treatment, I mean, you’re getting probably Zometa every month, and I don’t know if you’re on a Herceptin every three weeks or weekly schedule, but, people do find it fatiguing…
CALLER : Yes, every month.
DR. JOYCE O’SHAUGHNESSY : …Coming to the doctor’s office, just that part of it. And then, Zometa, you know, some people have funny reactions to it, with flu-like symptoms. Sometimes some achiness and I don’t know if that is…
CALLER : No. In fact, it’s amazing. I have no bone pain at all.
DR. LYNN SCHUCHTER : Great. Good.
CALLER : So, OK.
DR. LYNN SCHUCHTER : But get some sleep. You’ve got to sleep. You know, you really need sleep. Got to do it.
DR. JOYCE O’SHAUGHNESSY : Now, a patient mentioned to me the other day, who’s having terrible times sleeping after chemotherapy, and she saw one of the, sort of, alternative physicians that are in our area, and he recommended lavender oil.
CALLER : Really?
DR. JOYCE O’SHAUGHNESSY : And she took, he says to take the lavender oil and, you smell it. You put it underneath your nose and smell it an hour before you want to go to sleep, and then just before you go to sleep. And she was on Ambien, which is a sleeping pill, for a long time, and then this really, she said, made a huge difference in her ability to sleep.
CALLER : I have a whole garden full of lavender, so you said the right thing. Thank you so much.
OPERATOR : Thank you. Our next question is coming from Texas. Your line is live.
CALLER : Yes, Joyce, I am in Texas, obviously. I’m at Baylor and I am under one of your clinical trials with ACT…
DR. JOYCE O’SHAUGHNESSY : Ah! Great!
CALLER : And followed by the Arimidex.
DR. JOYCE O’SHAUGHNESSY : Cool.
CALLER : And, I think basically, the first question with regard to the fatigue and the cognition and everything, is kind of, right on target but, to elaborate a little bit, I was on, taking Neulasta during the AC’s portion, and then continued that through the ‘T’ portion, and started the Aranesp as I went into the Taxotere, and what I’m finding is, when I started the Arimidex right after I finished my chemo on the 8 th of February, I just went into a decline. I was totally fatigued. Day by day getting weaker and weaker, and at the same time I was also having problems with the expander. Where I had a mastectomy I had had an expander put in, in preparation for reconstructive surgery, and I had inflammation there. So, what they did is, my oncologist stopped the Arimidex until we could determine whether I had the side effects and the weakness and everything was coming from some sort of infection or whether it was coming from the Arimidex. And, what I’m hearing you say is that Arimidex will cause some fatigue, so, I guess my concern is, I’ll be going back on the Arimidex shortly, and what do I do to combat any of that fatigue.
DR. JOYCE O’SHAUGHNESSY : I think Arimidex can, I think any of the anti-estrogens, including Arimidex, can cause significant fatigue in a sub-set of patients. It’s not across the board. I think any of these anti-estrogens can do that. I think that’s one of the, sort of, menopausal side effects, if you will, of them. And we don’t, I’m not going to say, I don’t think we know the mechanism, honestly. As I mentioned, sometimes the people get pain, joint pain. That can drag them down. But..
CALLER : Yes, I was having that too.
DR. JOYCE O’SHAUGHNESSY : And that has to be dealt with, because chronic pain will make you feel bad and tired, OK? I feel very strongly that – anti-estrogens are life-saving for women, life-saving. For post menopausal women, with estrogen receptor positive breast cancer, anti-estrogens are twice as effective as chemotherapy. So, they are a must-have pill. Therefore, I feel that the doctors and the patients have to work real closely together to try different things to combat the side effects, whether it be joint pain, whether it be tiredness, whether it be severe menopausal symptoms, whether it be the insomnia. And the things that I use are first, as I mentioned, non-steroidals like Celebrex or Vioxx for the joints. Sometimes glucosamine chondroitin can help the joints swell. Definitely trazodone for sleep or other approaches. For the fatigue, what I do, I utilize the selective serotonin re-uptake inhibitors to try to balance out – what I tell women, and I’m not shy about it, I say, ‘Look, these pills like Arimidex are sucking your body dry of estrogen, let’s face it. This is not, this is 99% decrease of the estrogen in your body, let’s not fool ourselves. Particularly coming on the heels of Taxotere, which is the most profoundly fatiguing cancer drug, in my opinion, that we have.
CALLER : Yeah, I noticed that as soon as I started the Taxotere treatment it was like my energy level…
DR. JOYCE O’SHAUGHNESSY : Oh my gosh it’s unbelievable. It’s unbelievable. And then to come in with sucking the body dry. We have to do it. These are called curing breast cancer. This is very effective therapy. So, I don’t take it lightly, and I…
DR. LYNN SCHUCHTER : You put it so delicately, good.
DR. JOYCE O’SHAUGHNESSY : I do. I’m so delicate. I really do, and so, but, you know, let’s face it. This is what we’re up against. We’re curing breast cancer here, so we have to do it, you know? So, I really am a big advocate. I really say to women, “Look, get on some Lexipro, let’s get – try to balance out this profound estrogen deprivation that’s going on in your body. We’re depleting your brain of a number of neurotransmitters that we don’t even know about, because we don’t understand exactly what this severe estrogen deprivation does to the brain. But I do know that if I give women Effexor, or Lexipro in particular, but a lot of the other ones are good as well, some Wellbutrin – there’s a lot of them – they can restore some balance in the brain that helps women. They feel better. And they can stay on their anti-estrogens because otherwise they stop their anti-estrogens, they don’t come back to the doctor. I know this happens in my practice, when they feel lousy and they stop these things, and they won’t come back and tell the doctor they stopped these things. You know what I mean? They don’t want to go in and talk about that, you know. And that means they’re going to, they’re not going to get the highest possible chance of getting cured of breast cancer.
So, I really feel we have to be very, very pro-active about it. And, I don’t know whether you’re on any of these things or not, but I feel the Arimidex is an enormously important medication for breast cancer, and some women definitely get fatigued from it. And, so that’s what I do about it. And I feel like, I think your oncologist’s doing the right thing. You have to do the trial and error. It’s a trial and error. It takes, sometimes, several different attempts to figure out what’s going to work, and I say to women “Let’s try this”. If it doesn’t work, don’t stay on it. No sense taking something that isn’t helping you. We’re going to try something else. But you gotta, you know, I really try different things and get it so that the woman feels well again, but, as we said, you’re still fresh from it. You’re only six weeks; maybe four to six weeks out from finishing the chemotherapy, so you’re truly in the thick of things here, you know what I mean?
CALLER : Um-hum.
DR. JOYCE O’SHAUGHNESSY : It’s going to take a while. Up to a year. But, I do try to jump-start it, and I take this estrogen deprivation real, real seriously.
CALLER : OK. And will the Arimidex then also have an effect on my cognition? My ability to concentrate drives me crazy, because, just to keep my head going, I am still trying to work from home. In my position I do marketing programs in Europe. So, normally I would be traveling to Europe all the time, and I’ve been trying to work from home and do reports and keep up on things, and my ability to concentrate is, like…
DR. JOYCE O’SHAUGHNESSY : Very difficult.
CALLER : …Two or three minute max.
DR. JOYCE O’SHAUGHNESSY : Well, the first thing – I’ll say it again – the first thing is sleep. Got to sleep. Cannot concentrate without sleep. Period. That’s number one. Number two; there’s a small amount of data that we have from the Arimidex versus tamoxifen adjuvant trial, called the ATAC trial. The U.K. investigators, led by Fallowfield have a small amount of data looking at cognition, between tamoxifen and Arimidex. And what they showed, so far, is that in both groups there’s some diminution in the sub-set, just a sub-set, of women on both drugs. Doesn’t seem to be a difference between them so far.
So yes, I believe that these profound anti-estrogens can slightly affect cognition. I don’t think they’re causing brain damage. I don’t think that’s the issue. I think they’re causing changes in brain functioning that probably are reversible if you stop the anti-estrogen. But you can’t stop the anti-estrogen. You need it to get through the breast cancer, you know, so…
CALLER : Yeah, I’m looking at five years of it, so I’m thinking to myself ‘Am I going to be inhibited for the next five years just because of this particular drug?’
DR. LYNN SCHUCHTER : You know I think we’re going to have to..
DR. JOYCE O’SHAUGHNESSY : Right. You know, I think we’re going to have to, and again, I would go back to, I would try the Effexor, the Zolofts, the Lexipros. There may be others, maybe the neuropsychological things. But try the simple things first, because I think you probably are going to need one anyhow to balance out the profound estrogen deprivation.
CALLER : Right.
DR. JOYCE O’SHAUGHNESSY : And I also, you’ve got to give yourself time. Again, you’re right in the thick of it. You’ve got to give yourself time on this one.
CALLER : Yeah, OK. Thank you so much.
DR. JOYCE O’SHAUGHNESSY : Certainly.
DR. LYNN SCHUCHTER : So, if I could then wrap this up. I first want to thank Joyce O’Shaughnessy for her participation today. I mean, Joyce, you’ve really given us, I think, some very important background information about this big problem, and I think really practical ideas about how to fix some of these symptoms. And I think it’s important for, the fact that we’re doing this topic and this teleconference, this is really important that now physicians understand that these complaints that women have been having for a long time, who receive these treatments talk about memory changes, talk about chemo-brain, it’s taken the scientific community a while to understand that this is a real side effect of treatment. Really complex, many factors contributing to it, but I think we all recognize that this is a really important side effect of treatment for breast cancer and other patients with cancer, and that we need to do some serious work into looking at the mechanism of this and have a good understanding of how to inform you of these side effects and, you know, processes to try to reverse or interfere with some of the effects.
And, Joyce, if I could just summarize, I mean, I think you made some really important points about trying to sort out which factors are really contributing to the fatigue. I mean, fatigue and having memory disturbances is really complex, and that there are many factors contributing to it, but important to talk to your doctor about that. And, I think Dr. O’Shaughnessy’s emphasized sleep a lot. And I think that’s really important, because so many women’s sleep is interrupted, and we do have effective approaches to treating sleep.
So, I want to thank you again Joyce. It was fantastic. Really practical tips. And I want to thank all of you on the call for joining our conference today. And, once again, you’ve just asked really important questions and we’re sorry we didn’t get to all of your questions today.
I want to remind you that there is a questionnaire or evaluation for this program and that can either be e-mailed, faxed, or mailed to ‘Living Beyond Breast Cancer’, and don’t forget to check our site at http://www.lbbc.org for more information about what the organization can provide, and other upcoming educational events. And know that there are audio recordings for many of our programs, and transcripts of many of our programs on the website. So, this will be available soon. And we’ll try to look into the reference that Dr. O’Shaughnessy brought up and see if that would be something we should send out to you all.
So, thank you very much. Thanks Joyce, again, for your help today.
DR. JOYCE O’SHAUGHNESSY : My pleasure. Take care, everybody. Thank you.
DR. LYNN SCHUCHTER : Bye-bye.
OPERATOR : Thank you ladies and gentlemen. This does conclude today’s teleconference. You may disconnect your lines at this time and have a wonderful day.