In this podcast, Dr. Charles Loprinzi and oncology social worker and survivor Hester Hill Schnipper discuss the new ASCO Guideline, Management of Cancer Cachexia.
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Greg Guthrie: Hi, everyone. I'm Greg Guthrie, a member of the cancer.net content team. And I'll be your host for today's Cancer.Net podcast. Cancer.Net is the patient information website of ASCO, the American Society of Clinical Oncology.
Today, we're going to be talking about cachexia. And our guests are Dr. Charles Loprinzi and Hester Hill Schnipper. Dr. Loprinzi is the Regis Professor of Breast Cancer Research at the Mayo Clinic in Rochester Minnesota where he is an emeritus chair of the Division of Medical Oncology and an emeritus vice-chair of the Department of Oncology. He is also the Cancer.Net Associate Editor for Psychosocial Oncology. Thanks for joining us, Dr. Loprinzi.
Dr. Charles Loprinzi: It's good to be here, Greg.
Greg Guthrie: And Hester is the emeritus manager of oncology social work at Beth Israel Deaconess Medical Center in Boston. And she now works in private practice. A 2-time breast cancer survivor, she's a nationally known speaker, is active in numerous oncology organizations, and has written 2 books about breast cancer. Her daily clinical responsibilities include working with individuals, couples, and families living with cancer, and facilitating support groups. She is also a member of the Cancer.Net Editorial Board. Thanks for joining us today, Hester.
Hester Hill Schnipper: Thanks for inviting me.
Greg Guthrie: Great. Now, today, ASCO is publishing a new guideline on the management of cancer cachexia. Dr. Loprinzi and Hester both served on the panel for this guideline. Before we begin, we should mention that they do not have any relationships to disclose related to this guideline. But you can find their full disclosure statements on Cancer.Net. Now, let's talk a little bit about what this guideline means for people with cancer and those who care for them. So Dr. Loprinzi, what is cancer cachexia, and how common is it?
Dr. Charles Loprinzi: So cancer cachexia, the definition. We oftentimes call it cancer anorexia/cachexia, and so I'll try to define both anorexia and cachexia. A lot of people have heard of anorexia nervosa where people do not eat very well, so it's a loss of appetite is what anorexia is. For the cachexia part, you think of the people in the World War II camps when they came out at the end, where they had not eaten for a long time, and they were very, very, very thin. So cancer anorexia and cachexia is a phenomenon that comes on in patients with cancer, very frequently when they have advanced cancer, but oftentimes when they're just diagnosed, where patients are much thinner, and they're not eating very well.
Greg Guthrie: Hester, did you have something to add on that?
Hester Hill Schnipper: I think many patients, when they are newly diagnosed, experience appetite loss even if their weight has been normal up until then. But one of the ways to divide the world, are people who can't stop eating when they're under stress, and people who shut down and don't eat when they're under stress. So plenty of brand-new cancer patients fall into the second category, and, at least for some period of time during the particularly crisis anxiety-filled weeks around diagnosis, are not eating very much or very well. But that, generally, improves then as things settle down and their treatment begins and is not usually a cause for real worry.
Greg Guthrie: So is the cause of cancer cachexia often caused by the cancer itself, or is it a reaction to the cancer?
Hester Hill Schnipper: I suspect that Dr. Loprinzi can answer that better than I can. But my impression is that it usually is caused by the cancer itself and just the multiple medical problems that may accompany an advanced cancer.
Dr. Charles Loprinzi: So I agree with Hester on this point here. And it's not the treatment; it's the cancer itself. People used to think that patients who were receiving chemotherapy for early breast cancer, they were going to lose a lot of weight because patients who were getting chemotherapy for advanced disease lost a lot of weight. But in fact, patients with early breast cancer, when they get chemotherapy to try to help cure them, they gain weight. So it's not the chemotherapy that's causing the problem. It's the cancer itself. It changes the metabolic phenomenon of the body. People don't eat very well. And even if they get calories in, they don't metabolize them well, and so they still lose weight.
Greg Guthrie: So, Hester, what are some of the problems that can come from cachexia?
Hester Hill Schnipper: Well, certainly there are many medical related problems that Dr. Loprinzi can speak to better than I can. But the psychosocial or psychological issues also can be very troublesome for both the patient and those who love the person who is ill. If you are feeling terrible and not eating, that is obviously worrisome both to the patient and to their family members. And family members, generally, react by trying to encourage or even really pressure somebody to eat: making favorite foods, bringing in much more food than somebody wants, and then feeling very disappointed and perhaps even rejected if the patient just can't eat it. I mean, certainly, much of our advice—and maybe we're going to be talking a little bit more about this later—is to sort of back off and to a large extent let the patient direct what he or she is willing and able to eat.
Dr. Charles Loprinzi: And I would add to that, when you've lost a lot of weight and you're not eating well, it can impair your ability to function well. Patients who have lost weight, related to cancer, do worse in terms of prognosis, with shorter survival and more side effects from chemotherapy. And their quality of life is not as good. So it is a big problem with those situations.
Greg Guthrie: So who's generally bothered more by a patient's loss of appetite. Is it the patient or the patient's family and loved ones?
Hester Hill Schnipper: My experience is that it's generally more the family and loved ones. I mean, if the patient doesn't feel like eating, he or she just doesn't feel like eating. I mean, we've all had viral syndromes where, for a few days, we don't have any appetite. And you just don't have any appetite or are not interested in it. And I think some exaggerated version of that is probably what most patients feel. But family members feel very worried about it. There's all the sort of mythology around food and around nurturing and around love, and most of us take pleasure out of cooking for and feeding people whom we love. And when someone you love is sick, those feelings are even larger than they might otherwise be, and we kind of panic if everything we're trying to do to take care of somebody isn't working.
Dr. Charles Loprinzi: So I agree with Hester. In many patients, they just don't have an appetite. It's not a problem. It's not like they have pain, or it's not like they have nausea or vomiting. Now there are some patients whom that bothers them that they don't have an appetite, but many patients it really doesn't bother them. But as Hester said nicely, the family is oftentimes bothered tremendously by this particular situation.
Greg Guthrie: Okay. So, Hester, I'm going to follow up a little more. Is it important for family and loved ones to encourage patients to eat more then?
Hester Hill Schnipper: I think not. I think it is very important to try in a loving non-pressured way to communicate about it like, "Dad, is there anything you can think of that might taste good? Would you like a little bit of ice cream?" I mean, that kind of comment. And if dad says, "No. I don't want anything," then try again a few hours later.
I mean, certainly more frequent offerings of small amounts of food are much more likely to be accepted than bringing in a full dinner plate. But I think it's important to take cues from the patient because too much pressure is going to result in somebody eating even less than she might have otherwise.
Dr. Charles Loprinzi: I agree with that, 100%. There is actually an interesting story, true story, of a patient who mentioned this to somebody who was interviewing the patient afterwards. And the patient had advanced cancer and noted that when some of her relatives came in to visit her—and these are in her dying days and weeks—when her family came in to visit her, she would pretend she was asleep so she wouldn't have to interact with them because she knew they were just going to pressure to eat. And that's just a disaster in my mind. So it's a crazy sort of story to hear and all that. But I've mentioned that sometimes to patients' families so that they know don't over-bother the patients.
Hester Hill Schnipper: We can all relate to that. Even though you've always loved my lasagna, you may not want it tonight.
Dr. Charles Loprinzi: Yes. Especially if I have a viral syndrome and I just feel bad, I want to kick the food across the room because if I eat it, I'm going to throw up.
Hester Hill Schnipper: Right.
Greg Guthrie: So for patients who need nutrition, how often should tubes be inserted into the stomach to provide nutritional feedings?
Dr. Charles Loprinzi: So that's a great question, Greg. And there are ways you can get nutrition into a person who's not eating well, assuming their bowels are still working, and it's not a bowel obstruction sort of thing. And you can put food into the stomach. How can you do that? You can put a tube down their nose and put food in through that way—liquid nutrition that way. Or you can get a procedure done where you put a tube sticking out from the abdominal wall and the tube right into the stomach that way or to the small intestine. So you can give food in that manner. It's not infrequently done. Some countries more than others. And it's not frequently done.
It can be helpful on a patient who might have an obstruction of the esophagus so they can't otherwise swallow food, but, otherwise, the rest of the bowel is working and all that sort of thing. But oftentimes, if the bowel is working, if you put the food in that way, it does not improve quality of life or quantity of life for patients. And it can be a lot of hassle for doing it, and it's uncomfortable. So it's not recommended for most patients in this situation. If they just can't eat, then trying to force the food into them through their bowel does not seem to help things overall in terms of their quality or quantity of life. [crosstalk]
Hester Hill Schnipper: Yeah. My experience has been supporting everything you have just said, that this is a particularly difficult part of an ongoing difficult conversation between a doctor and a dying or very ill patient because most people think that if you don't eat, you're going to die more quickly. And families, particularly, often pressure the physician to go ahead in this way. And once you have put in a feeding tube or some other way to artificially feed someone, it's harder to take it out than it would have been to make the decision not to do it in the first place.
Greg Guthrie: So this is really an important quality of life decision?
Dr. Charles Loprinzi: Yes. You're right.
Hester Hill Schnipper: And the quality of life, obviously, being part of the bigger decision about quantity of life, and what are somebody’s values and goals.
Greg Guthrie: So that's really interesting. We've talked about introducing nutrition directly to the bowel, but how often should intravenous nutrition be given to people with advanced cancer cachexia?
Dr. Charles Loprinzi: That's a great follow up question, Greg. So given intravenous or IV nutrition, that can be done. You can put an intravenous line oftentimes in the neck or sometimes in the thick part of the arm. And you can run nutrition in that way for days or weeks. So it can be done. It is done in patients who do not have functioning bowels, in general. And it could be helpful in that situation and could keep people alive for months and years in that situation.
In patients with advanced cancer where they're just not eating and they're losing weight, is it beneficial to do that in those patients where there's this metabolic problem, and even if you give nutrition to them, they don't use it very well, and they may not gain weight otherwise? So that's been the subject of a lot of randomized trials where half the people get the intravenous nutrition and half the people do not. And the data that are available are that those who get the intravenous nutrition do worse than the patients who do not. Part of that is because they can get infections from this process. Or part of it is that you can get the glucose too high. And it's a lot of a hassle that sort of way. There's even some situations where cancers might grow faster by giving them more nutrition there.
So it's not recommended to be done in most patients. Sometimes, it is started. And if it is started, there should be clear goals, "Okay. We're going to do this for a month, and our goal is this so that mom gets strong enough to walk to the mailbox," and if at one month, she's doing worse and not doing that then it's oftentimes time to say, "Okay. Let's stop that. It didn't work very well."
Greg Guthrie: So Dr. Loprinzi, we've talked about nutrition, but how is cancer cachexia treated?
Dr. Charles Loprinzi: That's a good question. We've actually started off with a lot of the things you can't do. But what can you do? And those are somewhat limited, unfortunately. But there are some things. One is nutritional consultation, dietitian, that sort of thing. Part of the benefit they can provide is to recommend patients don't take crazy diets. And there are a lot of crazy diets out there recommended for patients with cancer. And they might be able to help them so that they can get more nutrition in. There's not a lot of randomized data to demonstrate that does a lot of good, but it's a recommendation that makes some sense.
On the other hand, what about giving drugs? There are many drugs that have been studied, randomized controlled trials with placebo where half the people get the drug and half the people get a placebo. And there are 10 or 15 things that have been tried. There are a couple of them that do show that you can use the drugs to stimulate appetite and improve weight. And there are 2 different classes of drugs. One is a steroid medication like dexamethasone. And the other is a progesterone hormone-like medication like megestrol acetate. So those can be given.
The guidelines that ASCO came out with recently that looked at this, and looked at all the randomized trials, suggested that physicians should not feel pressured to give these medications. And the reason for that is that these medications do not improve quality of life or survival, and they can have some side effects. Steroid medications can increase the chance of infection. They can cause peptic ulcer disease or stomach ulcer disease. The megestrol acetate can cause blood clots. And in some of the randomized trials, the patients who got the megestrol acetate for treating cachexia, on average, died sooner than the patients who did not. So not recommended for everybody. But if a patient really says, "My loss of appetite is really bothering me, not the family, but bothering me," then they might choose to try these medications. It's reasonable to try them for a limited period of time and then see if they work, right? For 2 weeks or 3 weeks, and then stop if it doesn't work. There are studies going on trying to find newer better agents for this situation, but results from those are not available yet.
Greg Guthrie: Great. So, Hester, how does this ASCO guideline, management of cancer cachexia, help improve the lives of patients?
Hester Hill Schnipper: Well, we're hoping that this ASCO guideline, like all the others, will be useful to physicians, nurses, dieticians, patients, and families themselves, anybody working with cancer patients or thinking about how to improve the quality of life of cancer patients. I am particularly hoping that these guidelines will decrease the use of very difficult treatments that don't generally help or improve somebody's quality of life or the length of time that someone has to live in very difficult and stressful circumstances. We're hoping that it will help families understand why medical recommendations are made and why, often, in this situation, the recommendation is to not do something, because that's not usually what families expect to hear. So understanding better that the focus needs to be on someone's quality of life and how best to make the best of whatever days there are, that's one of our major goals. I also would like to add that I regularly write a blog called Living With Cancer which is published through the BIDMC Cancer Center, and there is a blog available talking more about this issue and primarily from the psychosocial or family side of it.
Greg Guthrie: Thanks for sharing that, Hester. We'll definitely put a link to that in our blog post on this podcast and in the transcript. But this has been a really helpful discussion. It's really important to talk about cachexia in terms of quality of life. And, obviously, this is an important facet for this ASCO guideline to cover. So Dr. Loprinzi, Hester, thank you for sharing your expertise and insight today. It was great having you.
Hester Hill Schnipper: Thank you so very much for asking me.
Dr. Charles Loprinzi: Thank you very much.
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