Managing Pain

Learn about various types of pain that may occur after a bone marrow or stem cell transplant and effective strategies to manage it.

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Managing Pain

April, 2016

Presenter: Judith Paice, PhD, RN, FAAN, Robert Lurie Comprehensive Cancer Center, Cancer Pain Program

Presentation is 33 minutes long with 24 minutes of Q & A

Summary: Pain is a common occurrence during and after a stem cell or bone marrow transplant. This presentation discusses the types of pain patients may experience, the most common remedies and how to manage the side effects of pain medications.


  • Pain can affect people physically, psychologically, socially, and spiritually, so managing pain is an important part of medical care. Effective treatment may not eliminate pain but it can manage it.
  • Pain can arise from many sources, including cancer itself, diagnostic procedures, radiation and chemotherapy, infection and graft-versus-host-disease (GVHD).
  • Keeping a pain diary with details of the timing, severity, duration, and other aspects of the pain experience can help practitioners diagnose causes of pain and treat it more effectively.

Key Points:

(05:59): There are different types of pain. Nociceptive pain involves aching and throbbing.

(06:53): Visceral pain is cramping, squeezing.

(08:00): Neuropathic pain is a tingling, burning, sharp pain.

(08:51): For nociceptive pain, non-opioids like acetaminophen can be effective.

(10:03): For neuropathic pain, opioids are often needed. Neuropathic pain may also be treated with adjuvant analgesics, anti-seizure drugs or anti-depressants.

(11:50): Visceral pain may be treated with opioids or other alternatives. 

(12:16): Bone pain may be treated with physical therapy, surgery, orthotic devices or medications including opioids or antidepressants. 

(15:15): Neuropathic pain can be treated with physical therapy, topical treatments, and various medications.

(19:03): Pain from GVHD can affect many part of the body. Steroids, physical therapy, and topical treatments may be effective for GVHD pain.

(28:43): Finding a pain specialist can be a challenge; word of mouth referrals are often helpful. Several organizations also have information on how to find a pain specialist.

Transcript of Presentation:

(00:00): [Jackie Foster]: Introduction. Thank you all for attending this morning. My name's Jackie Foster. I'm a patient education specialist at Be The Match, and I'll be your moderator this morning. I'm looking forward to hearing from our guest speaker on this really important topic.

(00:29): Dr. Judith Paice is the director of the Cancer Pain Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and a research professor of medicine at Northwestern University's Feinberg School of Medicine. She's served as president of the American Pain Society and Secretary of the International Association for the Study of Pain. Much of her clinical work has been in the relief of pain associated with cancer and HIV disease. Please join me today in welcoming Dr. Paice.

 (01:04): [Judith Paice]:  Overview of Talk. Thank you, Jackie. So, this whole topic of pain has gotten to be very controversial, as Jackie and I were just talking about, and you probably hear it in the news all the time. It's this whole issue of balance. We need to make people comfortable so that they can function. And to do that, sometimes it requires powerful medications, but unfortunately those powerful medications also tend to be misused. And so that's the tension that you're going to hear as we go through our talk today.

(01:57): We're going to talk about the different sources of pain that may occur in people who have undergone transplant, the types of pain that you might experience afterwards and the techniques that we use to assess pain.

(02:12): You've probably noticed that we don't have a lab value or an x-ray that tells us if you have pain. In fact, some of you may be in pain right now and I can't tell by looking at you. So that's why pain management really requires a team approach.

(02:28): We're going to talk about different interventions to relieve pain and the barriers, so you can understand what kind of obstacles you need to overcome, the best practices in communicating with the healthcare professionals about your pain, and then how to identify an appropriate pain specialist, which is not always as easy as it sounds.

(02:50): Pain affects every aspect of someone’s life so there are many good reasons to treat it.  So first of all, why do we treat the pain? Well, as you know better than anybody, pain affects all aspects of a person's life. It affects your mood, it affects your sleep, it affects your function. And if you have significant pain, it impairs all those different components of your life. In fact, it can even alter your relationships with other people because you just don't want to be around others.

(03:16): So there are really good reasons why from a physical perspective, a biologic perspective, a psychologic perspective, and a social and spiritual perspective, we need to treat pain so we can make all parts of that individual working to their best capacity.

(03:35): Treatment may not eliminate pain but it can manage it. Now, what's the issue? What can you really expect? I would be lying to you if I said you could have zero pain 24/7. It's just not feasible. It wasn't feasible before you had cancer, and it's not feasible after you've been treated for cancer.

(03:54): But we can, in most cases, do a pretty good job of bringing the pain down so that you're comfortable, and so you can function, because that's the other important piece. The more you can move, the better you can function. And actually, that movement can help relieve the pain in many circumstances.

(04:15): We always have to be cognizant of safety issues. There are significant side effects to all of the pain medicines, not just the opioids. And we want to improve the quality of life. That's really our goal.

(04:28): Pain can arise from cancer itself, diagnostic procedures, radiation and chemotherapy, and infection and graft-versus-host-disease (GVHD). So what are the different sources of pain that can occur related to cancer? Well, the tumor itself can cause pain. Diagnostic procedures that we do like bone marrow aspirates, for example, or biopsies, other kinds of procedures can be painful.

(04:45): Radiotherapy can sometimes be painful - sometimes the positioning on that hard table or some of the unique ways we have to position patients, depending upon where the radiotherapy is being administered.

(04:58): Surgery and other invasive procedures clearly can be painful.

(05:03): Steroids, although we use them for positive benefits, unfortunately, they can cause long-term complications like avascular necrosis, a bone problem that we'll talk about later.

(05:18): Chemotherapy is vital. It relieves the cancer. It can, in many cases, cure the cancer. However, some of these agents can cause neuropathies or other kinds of complications.

(05:31): And then infection and graft-versus-host disease can lead to pain. So there are a myriad of potential causes of pain in people who are undergoing transplant, people with the blood tumors.

(05:45): So what are some very specific syndromes that we see after transplant? We like to divide pain up into three categories because it actually helps us to understand what treatments might be helpful.

(05:59): There are different types of pain. Nociceptive pain involves aching and throbbing. So you might be hearing these words, nociceptive pain, visceral pain, and neuropathic pain. Nociceptive pain in the person who doesn't have cancer - the perfect example would be you went to the gym, and you haven't for a while, and you overuse some muscles. You can point to those muscles, it's aching, and it's throbbing. But in people who have undergone treatment, it might be bone pain. It might be arthritis because some of us go into transplant with pre-existing arthritis.

(06:30): And then I mentioned before that avascular necrosis where particularly the head of the femur can be affected, where there's not enough blood flow. Other bony aspects can be affected by avascular necrosis. So this pain tends to be aching and throbbing. And I'll show you in a little bit why it's an important to characterize the pain.

(06:53): Visceral pain is cramping, squeezing. Visceral pain can be troublesome because it's not localized. It can be diffuse, and sometimes it can even be referred. Sometimes if you've got belly pain, it can actually be felt up in your shoulder. People who have ever had a laparoscopic procedure, like a laparoscopic gallbladder surgery or other laparoscopic procedures where they expand your belly, many people wake up in the recovery room and they're telling us, "Oh my gosh, my shoulder hurts. Why does my shoulder hurt?" It's because they blew up the belly a little bit so they could really explore what was going on in the abdomen. And that pressure of the gas that they use presses up against the diaphragm and the vagus nerve, and that sends signals to the shoulder.

(07:44): Well, we can see that in people who also have problems in the belly. Common examples in people who have undergone transplant, many people have experienced the diarrhea of C. diff, or cystitis where the bladder has gotten inflamed.

(08:00): Neuropathic pain is a tingling, burning, sharp pain. And then the third category of pain is neuropathic. If you've never felt it, good for you. Here's an example from daily life. If you ever hit your funny bone and you get that weird shock-like feeling that's not funny that goes up and down your arm, imagine having pain like that 24/7. And we're going to address questions at the end. So tingling, burning, sharp pain, that examples include post-herpetic neuropathy, like post-shingles pain or chemotherapy-induced peripheral neuropathy. Or some people develop neuropathy even with transplant, with GVHD. And we'll go into more depth about that one in particular because it's so common.

(08:51): For nociceptive pain, non-opioids like acetaminophen can be effective. So remember I mentioned it's important to kind of characterize the terms, the words that your pain feels when you talk to the professionals? It's because the treatments are linked to the kind of pain. So you can see through this slide, if you've got nociceptive pain like bone pain, arthritis pain, avascular necrosis, we can use the non-opioids, things like acetaminophen. I'm going to say the NSAIDs with kind of a qualifier. NSAIDs are ibuprofen or naproxen. If you have any kind of renal complications, kidney complications, or if you have myeloma, most people discourage the use of the non-steroidal anti-inflammatory drugs, or NSAIDs, in that group of people, because those drugs, even simple drugs like ibuprofen can be hard on the stomach. They can cause stomach bleeding. But even more challenging, they can cause problems with the kidneys. We've got to keep those kidneys working. And then we use opioids. This is, again, all for nociceptive pain.

(10:03): For neuropathic pain, opioids are often needed. For neuropathic pain, that chemo-induced neuropathy, the tingling, the burning, the shingles pain, we do use opioids. Now, I've learned that some of my older physician colleagues and older nursing colleagues and older pharmacy colleagues were taught that opioids don't work for this kind of pain. So you may hear that in the clinic. We do know that they work. However, we need to use higher doses to treat the nerve pain than if we were treating standard achy-throbby kind of pain. And so whenever you need to increase the dose, there's the increased risk of side effects, right? So we've always got to balance that.

(10:47): Neuropathic pain may also be treated with adjuvant analgesics, anti-seizure drugs, or anti-depressants. Now, the group of drugs that do work nicely for nerve pain, we call them the adjuvant analgesics, and it's kind of a catch-all. They're drugs that were originally introduced for other reasons, but along the way, we learned they relieve pain. So drugs like the anti-seizure drugs, no, you don't have seizures, but these work to relieve nerve pain. In fact, some of these drugs like gabapentin, which is Neurontin, or Lyrica, which is Pregbalin, they were originally released to treat seizures, but we use them far more to treat nerve pain.

(11:24): Another are the anti-depressant drugs. Even if you're not depressed, they work to relieve nerve pain. So don't be offended if the doctor recommends one of these anti-depressants. It's not because they're thinking that you're crazy or you're depressed. It's because they work really well for nerve pain. So do think about these other medicines and we'll come back to those in a little bit.

(11:50): Visceral pain may be treated with opioids or other alternatives.  And then visceral pain, belly pain is really challenging. We clearly want to treat whatever's causing the problem, but we might use opioids, we might use steroids, and we sometimes do try these drugs like gabapentin or Lyrica, or some of the antidepressants.

(12:08): So let's talk really specifically about some of these syndromes because I think some of you may be experiencing some of these specific kinds of pain

(12:16): Bone pain may be treated with physical therapy, surgery, orthotic devices or medications including opioids or antidepressants.  So bone pain, what do we do? And again, it could be from arthritis, it could be maybe you have a metastasis, or you've had vertebral body compression fractures, or you've have avascular necrosis from the steroids. We use physical therapy. And that may seem a bit odd, right? You've got bad pain, and we're recommending that you move.

(12:37): Well, moving is the best thing you can do for joint kind of pains in particular. Plus, we don't want you to lose any more muscle mass because that can cause further complications. It can also cause contractures. If you're not moving your joints, the joints get kind of locked up. And we want to be sure that you're stable. So sometimes we use physical therapy for other kinds of pain just to ensure that you're safe, so that you can get out of a chair safely, so that you can walk safely.

(13:08): Sometimes we use surgery to stabilize a bone or a joint if the tumor has made it unstable. Clearly, cancer therapy is really helpful in some cases, and radiation therapy is very often used for bony metastases.

(13:25): We may use braces, or slings, or boots, or other orthotic devices to help support that joint or that bone, make it easier for you to walk, maybe guard that extremity.

(13:39): And then pain medicines. And remember, it's the non-opioids like acetaminophen, Tylenol. Now the problem with Tylenol, of course, is you can't take too much of that because it's hard on the liver. So we used to think that 4,000 milligrams a day was safe, but now we believe that that's way too much. So probably most liver doctors tell you 2,000 milligrams. If you're taking extra strength Tylenol, that's four pills a day. And be careful. A lot of the sleep medicines, the cold medicines, the sinus medicines also have Tylenol or acetaminophen in them.

(14:21): I mentioned already the issue with the non-steroidal anti-inflammatory drugs. Really have to look at the kidneys, so be careful about that. The third problem... I mentioned, the GI bleeding, the stomach bleeding ulcers, and I mentioned the problem with the kidneys. The other major concern with the non-steroidal anti-inflammatory drugs, like ibuprofen, are the problems with the platelets not being able to form a clot. So especially if you're still getting chemotherapy and it's a chemotherapy that lowers your platelets, then you probably should not be on any of these drugs.

(14:57): We use the opioids. Opioids are drugs like codeine and morphine and oxycodone and hydrocodone. We'll talk more about those.

(15:05): We use gabapentin or pregabalin, Neurontin, or Lyrica. And then duloxetine (Cymbalta), one of those antidepressants, or other antidepressants.

(15:15): Neuropathic pain can be treated with physical therapy, topical treatments, and various medications. Now here's chemo-induced neuropathy, and we also see this as a complication of transplant and GVHD, or graft versus host disease. So what happens is people develop... The typical distribution is on the left. The fingertips and the toes, the bottom of the toes, the non-hairy skin typically gets affected. You get tingling, burning, electrical sensations. But I have had patients, like the one on the right, where almost the entire leg is affected. Typically, we see the toes first, then the fingers, but everyone's a little bit different.

(15:53): So what do we do for this pain? We use physical therapy, because when people have had peripheral neuropathy, especially in the feet, you lose your sense of stability. And when we're walking, you can compensate by being able to visually see the floor. But if it's very dark out or a lot of shadows and you can't see the sidewalk or the floor, or at night, or here's where a lot of people tell me, in the shower, when you close your eyes to wash your hair, to avoid getting soap in your eyes, all of a sudden you feel really unstable. So grab bars in the shower, I can't emphasize that enough.

(16:41): And keep a night light. If you get up in the middle of the night to go to the restroom, get rid of the throw rugs that might be in the way because those are the things that people trip on. And maybe even use a little bit of a night light in the hallway or in the bathroom so you've got that visual cue of where you're at.

(17:01): We can use topical treatments. I know this sounds silly, but things like Icy Hot and Bengay for some people provide some relief. I'm not going to lie to you and say it's 24/7 after one rub down. So you might have to repeat it, but for some people, it gives them some temporary benefit.

(17:21): There are compounded gels and creams that have been studied and have been found to be helpful. But here's the problem. Because they're compounded, they're not FDA approved, and most insurance companies will not pay. So when I'm ordering it for patients, what I typically see is that it's about 150 to $200 a month for a supply of this medication, and insurance typically does not pay. You need to find a special pharmacy. A typical retail pharmacy doesn't usually make up these medicines, and you do need to apply these lotions or gels a couple times a day.

(18:01): And then we use the pain medicines that I mentioned, opioids in some cases, gabapentin or pregabalin, duloxetine. And for some people who have more complex pain, it might be one from each of those categories.

(18:14): And then there's a new treatment out, and I put it with a question mark because it's not been proven yet, but it's something called Calmare, or some people call it the scrambler. And it is a treatment that you go to for 10 sessions in a row, so Monday through Friday. It's about a half hour each session for two weeks in a row.

(18:35): For those of you who live in Chicago, there's one center that offers it in the far northern suburbs. This is sometimes also called the scrambler treatment. They put electrodes in special areas, depending upon where your nerve pain is located, and for some people, it helps relieve the pain. Now, here's the downside. It's $400 a treatment times 10 treatments.

(19:03): Pain from GVHD can affect many part of the body. So now what about people who have pain after GVHD? What are some of those symptoms that people experience? Well, almost every body system in the whole body can be affected by GVHD. In the skin, and we're talking specifically about painful symptoms, you can get itching, almost like contractures where your skin is just not flexible. In the mouth, you can get mouth sores, food intolerance, food insensitivity, dry mouth. In the eyes, dry eyes. In the esophagus, painful swallowing. In the intestines, clearly diarrhea, which could cause pain and cramping, musculoskeletal or joint pain, neuropathy sensations, pain in the bladder, pain when you void. And in the vagina, it can be very painful to have intercourse, difficulty voiding.

(19:59): I'm just going to run through some pictures here of people who have had skin changes associated with GVHD. These can look kind of like burns or sunburns, or scabbing with ulcers, or the skin looks like it's kind of flaking.

(20:17): Steroids, physical therapy, and topical treatments may be effective for GVHD pain. So what do we do for the skin changes? We certainly treat the GVHD, often with steroids or other immune suppressant type drugs. We use physical therapy. That's a theme you're going to hear me say with all of these syndromes. We use topical treatments. This is where it's really good to be referred to a dermatologist who has expertise in cancer, because they really understand the specialized needs of the skin in people with cancer. And then all of those different pain medicines that I've already been listing for you can be tried for people with skin changes.

(20:51): What about ocular pain? Well, again, we treat the GVHD. We improve the humidity if we can. We use a variety of different eye topical eye drops and eye treatments. We sometimes use opioids in very severe cases.

(21:07): I wanted to share with you something that I've been really impressed by. It was originally called Boston Lenses. These are bigger than a typical contact lens, and it's got an area in it that actually holds extra fluid. So when you put the contact lens in, you have to hold it straight so that the fluid stays in it, and that continuously bathes the eye, and it covers a much wider area of the eye. It used to only be available in Boston. Now it's available at multiple centers around the country.

(21:43): I had one young girl who had such severe ocular pain that we were treating her with opioids. She always had to wear glasses. She could barely work at the computer, and she was always scrunching her face because every time she blinked, she said it felt like she was rubbing sandpaper against her eyes. Once she got these lenses, we got her off all medications and she was just a new woman, could easily work at the computer.

(22:12): Steroid use can cause avascular necrosis which may need to be treated with physical therapy or surgery. This is avascular necrosis. It's in part due to changes in blood supply, often due to the steroids. It often affects the head of the femur. You see this sometimes in baseball players or other sports figures who, of course, are not using steroids. That was a little sarcasm. And what happens is it deteriorates. The head of the femur deteriorates, and it's kind of like having or needing a hip replacement. And this can be exquisitely painful because of the instability or the rubbing of bone on bone.

(22:47): So again, we use physical therapy. Surgery is the definitive treatment for this, and it can be exquisitely helpful. We use topical treatments. We use the same pain medicines we've been speaking of.

(23:00): Muscle cramps, I get lots of folks tell me about this. And honestly, there is so little in the literature. A good colleague of mine has developed a tool to measure this in. She's from Fred Hutchinson in Seattle, but we still don't understand the underlying etiology. For some people, it might be electrolyte changes.

(23:20): For some people, stretching before you go to bed can be helpful, just a simple... not vigorous exercise, just stretching those quads and those calves. So if you go online, they tell you to drink tonic water or pickle juice. I'm not sure that's the best way to help get you ready for bed at night. But for some people, they report that it's helpful.

(23:45): I've had some people rub menthol cream and give themselves a good massage in the calves. This is particularly helpful for people who lie down, fall asleep, and then wake up an hour later with these bad cramps. And then for some people, we've had some success with gabapentin and pregabalin. And then for some people, I've even used Ropinirol, which is the medicine that you've seen advertised undoubtedly for restless leg syndrome.

(24:12): Keeping a pain diary can help diagnose the type of pain and most effective remedies. So here's how you can help. That's a little bit about the different syndromes. Let us know that you're having pain. Don't assume that we know. Keep a diary. So tell us, as analytically as you can, thank you, what time of day it occurs, what does it feel like, where is it located, and for many people, it's more than one site, what you've tried, what works, what doesn't work, and even what you've tried in the past. Even if it was for a dental procedure 20 years ago, if you had a bad reaction, we want to know so we don't reinvent the wheel. So these are some of the questions that we'll be asking you. So it helps if you kind of think about it ahead of time. It'll make your appointment much more efficient, and you'll be able to help your professionals put together a better plan for you.

(25:01): So what are our goals? I've mentioned it's not zero pain 24/7, but it's clearly enough relief. And if we can prevent the pain, all the better. If you're experiencing pain, we want to relieve it as much as possible so you can be active because that's the most important part of your recovery. And of course, we want you to be safe.

(25:23):  I've listed for you already the different medications that we use, the fact that we use anti-cancer treatments like chemotherapy, radiation therapy and others. Integrative therapy, so massage, acupuncture, distraction, mindfulness, et cetera. Interventional procedures, things like nerve blocks and steroid injections, rehabilitation techniques, physical medicine and rehab services can be superb with putting together good treatment plans that incorporate postural changes and realignment of the spine. And then cognitive behavioral approaches. So I've mentioned acetaminophen and NSAIDs and the pros and cons of each of those drugs, where we have to be careful.

(26:10): Opioids can have issues with tolerance and addiction. When used, they are best taken preventatively. With opioids, the stigma right now is really a problem, and we're having a lot of trouble getting the medicines that we need. And we'll talk more about this during the... Because I'm really interested in hearing from you. I know what I experience on the prescribing end. I want to hear from you.

(26:27): Concerns about tolerance and addiction. People are really fearful that they're going to become addicted, so I take a strong addiction history when I'm first meeting somebody. And yes, some of the questions are kind of invasive and kind of tough, but I'm evaluating, is this person at risk? Now what does that mean? Does that mean I'm not going to give them pain medicines? No. But it means I put together a strong support plan if someone is at risk for addiction.

(26:55): Remember when we give you that immediate release, like that Norco or Vicodin or Morphine, those immediate release tablets, they aren't immediate. Most people feel something in 20 to 30 minutes, but the peak effect is one hour. So those are some of the things that are important to understand. Take it preventatively. So if you know that getting into the car and bouncing along on the potholes of your local community - certainly we've got them in Chicago - and that hurts your spine, well, then take it before you're going to do something painful.

(27:28): And these are all the different opioids that are available. You have them in your handout. And you know the side effects. They call me the pain and the poop nurse on the clinic because we are constantly talking about constipation and ways to manage that. And then the adjuvant analgesics are drugs like the steroids, the gabapentin that we talked about, the antidepressants, local anesthetics and yes, cannabinoids. So we can talk about that too during the question and answer.

(27:57): I mentioned other approaches like integrative therapy, acupuncture, massage, yoga, interventional procedures like nerve blocks, rehabilitation like physical therapy, occupational therapy, exercise, heat, cold, and cognitive behavioral. So what are the barriers?

(28:16): Well, you guys are the expert at this. You all know what's keeping you from getting adequate relief. It's the communication issues. Many of us, as healthcare professionals, have not been educated about pain. The system sometimes makes it hard. Time is an issue. The regulatory burden is a problem. And so we've got lots of barriers that we need to work to overcome.

(28:43): Finding a pain specialist can be a challenge; word of mouth referrals are often helpful. I was asked to address how to find a pain specialist. And I'm going to be honest with you, it's hard. Most pain programs are anesthesia-based programs and they might call themselves multidisciplinary programs because maybe they have a nurse in the office, but most of these programs really focus on the blocks and don't offer the wide array.

(29:06): I think the best way to find a pain specialist is through word of mouth. Find out from other patients, colleagues, friends, 'who have you found that's helpful?' You can ask the oncologist that you work with, their team, and see if they might be able to refer someone to you.

(29:24): Several organizations also have information on how to find a pain specialist. Here are some resources. The BMT InfoNet clearly has resources. The National Cancer Institute has got some great educational resources. The American Chronic Pain Association has got some wonderful resources that are not specific to cancer pain, but they are specific to managing pain. And they also have support groups, and that may be a way to find people in the community.

(29:51): Don't forget the National Cancer Institute has a nice website, and you've got all of these handouts. The American Cancer Society has some very nice pain related resources.

(30:02): For those of you that live in the Chicago area, I know one of the challenges in using the integrative techniques is insurance usually won't pay. So these places, the Cancer Resource Center, the Cancer Wellness Center in Northbrook, Cancer Support Center in Homewood, the Wellness House in Hinsdale and Living Well, all of these places offer totally free massage, acupuncture, reiki to people with cancer, and some of them also offer it to caregivers as well. So if you live in the Chicago area, you might want to look into these. And if you live elsewhere, these are a network of cancer resource centers that are around the country. So you might have one in your community.

(30:48): Pain medications should also be guarded against theft and properly disposed. The last thing I just want to mention, because I didn't use to teach this when I was meeting new people, and now I include this in our first visit, and most people remain shocked when I tell them this, lock up your pain medicines. Do not leave them in the medicine cabinet. Do not leave them on the kitchen counter. If people know that you have cancer, you are going to be targeted as likely having narcotics in your house. And you may have a cleaning person, a plumber, a work person coming into your home, or your landlord has access to your apartment, and they will steal the medications because, unfortunately, addiction is a very powerful disease.

(31:34): And if you travel, like some of you have traveled here this weekend, do not pack your pain medicines in your suitcase. I've had way too many episodes where they've been gone missing afterwards. So please, please, please...

(31:48): And the real estate agents in Chicago know about this, by the way. They have an open house and a couple comes. One distracts the real estate agent, the other makes a beeline for the medicine cabinet. So they advise everybody clean out your medicine cabinet before we have any open houses.

(32:07): And then there are guidelines for how to dispose of the medicines when you don't need them anymore. The DEA has a nice website. They have a national take back day twice a year. Yesterday was the spring take back day. The next one will be in October. But for many people, your local police stations have back days, no questions asked. And they incinerate them. They don't put them down the toilet or down the water system, because we are worried about these medicines entering into our water system.

(32:41): And this is our BMT program at Northwestern. And so thank you very much. Now, I'm really interested in hearing from you. And if you could come to the microphone, because this is being recorded, so that people could hear if... Yeah. Thank you, Janet. Appreciate that.

Question and Answer Session

(32:59): [Jackie Foster]: Great. So we have about a half an hour or so for questions.

(33:07): [Audience]: So I have a question. I'm from Grand Rapids, Michigan, and I just attended Gilda's Club for the first time. And for those of you that don't know what it is, it's a cancer support group, and it's for the whole family, including your caregivers and children. And Saint Mary's Free Bed. It's - a rehabilitation hospital- they came to Gilda's Club last week and told us about this new treatment that they're doing for neuropathy, and it consists of these compression gloves and socks that they send stimulants through. They said it's not as invasive as the electrodes that they use, that they put in you, and they said that they have seen some really good improvements with it. So I don't know if anybody's interested in looking into that. They are the first rehabilitation hospital that has figured this out. So if you guys are interested.

(34:13): [Judith Paice]: Thank you for sharing that. I'm not familiar with that. I've not seen any research on it yet, but... It's new. Okay, super. Super. Thank you. Anybody else have a question or concern? Okay.

(34:48): [Audience]: Do you know about Parsonage-Turner syndrome?

(34:51): [Judith Paice]: No, ma'am. I don't. I'm sorry.

(34:54): [Audience]: Neither did any of the staff or doctors when I was getting my stem cell transplant. It's a very, very rare autoimmune neuropathy that tends to be triggered by catastrophic events. And when I told my providers, I told everyone who listen that I had difficulty using my arm, extreme pain, they look at you with a bland kind of vacant, pleasant expression on their face and they don't respond. I later had to investigate it all. I finally found out months later due to my own initiative. But I think so many medical professionals, they're not interested in hearing about patient pain.

(35:52): [Judith Paice]: I'm sorry to hear that. I know my colleagues are interested and worried, but there are times that they haven't been taught, many. It's still sad how little the medical schools include pain in the curriculum. And so we're trying to work to change that. And I'm so sorry that you experienced that. And I believe you. You're not alone. So what I encourage people to do who have symptoms that aren't being addressed is to be persistent and describe it, and then advocate for yourselves like you did, like getting a good neurologic consult and asking for help.

(36:32): [Audience]: When I finally did get help, it was 10 months down the road because it took a while. If anybody had taken me seriously and they catch you in the first two weeks, you're good. But otherwise, you can have two years or longer of pain. There's no choice. And I advocated for myself, but it didn't do any good. And I just think there is so much willful ignorance and well-meaning intentions not to let people become addicts for their own good. I don't understand that.

(37:16): [Judith Paice]: Yeah. Yeah. Thank you for sharing that. Thank you. I'm sorry you experienced that.

(37:26): [Audience]: I had a question. You had mentioned that avascular necrosis can also be caused from steroid use. I was wondering then what the relation is in terms of the steroids you have to take for the GVHD, how that would affect then all these other issues.

(37:50): [Judith Paice] Yeah, that's the tension. We need the steroids for treating the GVHD, but the steroids have negative effects, as you know. And I'm highlighting the bone effects, and it could also lead to osteopenia and osteoporosis. It also can affect the adrenal gland function. It can affect the sugars, causing diabetes, Cushing's syndrome and things. So we need them to some degree, but we always want to use the lowest dose possible to try to prevent as many of these effects as possible. So that's what your doctor is constantly working with, and your team is constantly doing. They're probably reducing the dose as much as they can to see how you do with that. So that's always the trick, is keeping the dose as low as possible to preclude the development of some of these effects.

(38:46): [Audience]:  Are there any studies on the length of time of being on steroids that if you're just down for a few months, or if it's a couple of years?

(38:54): [Judith Paice]: Clearly, it's a dose and a duration effect. So the longer you're on them, the greater the risk. The higher the dose that you're on, the greater the risk. And then there are other risk factors as well. Things like smoking also alters blood flow, so you don't want to be smoking. And we don't have good data about this, but our sense is if you keep moving, because when you're moving, you're getting blood flow around the body to a greater degree. And so keep moving, keep exercising as much as you can. And don't smoke because that will also affect the blood flow.

(39:42): [Audience]: I actually have a couple questions. During my treatment, really kind of morphine was the only thing that would do the job for me. I guess like a lot of people here, I've had pills for meals, there's so many, so I try to limit as much as possible. I take Advil now just when I can. It doesn't relieve the pain because sometimes I'm looking for just enough to take the edge off so I can sleep. So I guess part of my question is how much Advil is safe. I could literally take it every day, and I try not to unless it's critical. And also, I guess kind of tying into that, a lot of times, I take it before bed because I can't sleep because of pain. And how much do you think poor sleep or severe lack of sleep ties in to my overall pain?

(40:41): [Judith Paice]: So pain affects so many other symptoms. Pain impairs sleep. It affects your mood. It affects your ability to be social and to exercise. So I realize the contradiction. I'm telling everybody that they need to move, but it's hard to do that when you have pain. So it's all about finding the balance.

(41:02): In terms of sleep, if the pain is what's... And I am not going to give anybody very specific guidelines or recommendations because I don't know your medical history. I would be very, very cautious about taking Advil, ibuprofen, naproxen, which is Aleve, any of those medicines if you have a history of myeloma or if you've ever had problems with GI bleed or kidney issues, or if your platelets are low. And I would make sure your team knows that you're taking this and how often you take it. For the healthy person, intermittently, it's okay to take it regularly. But when you've been through everything you've been through, it may not be safe. So again, I don't know your lab values and all that, so it's best to talk to your team.

(41:57): It's a conundrum in that opioids don't hurt the kidneys, they don't hurt the liver, they don't hurt any of the organs, and they can be very helpful, but we have these issues right now, in particular in people who have a risk of addiction. We need to be careful. And I always teach everybody you should never take these medicines to improve your mood. You should never take these medicines to help you sleep.

(42:29): Now, it's different what you're saying. I'm saying don't take these medicines to make yourself sleepy so you fall asleep. Because you know what's going to happen? Your body quickly becomes tolerant to the sedating effect. But if you're having pain when you lie down and you can't fall asleep because of the pain, then an opioid might make good sense then as long as it's safe for you to be taking that. So I think you need to have a really good conversation with your team about how it's helping, what negative effects it might be having.

(43:07): Now, we do know... I didn't have enough time to really talk about long-term opioids. Short-term, they can make people feel queasy. Usually, that goes away. They can make people feel a little fuzzy and a little sedated. That usually goes away. Constipation never goes away.

(43:28): Long-term, we know that for some people, the opioids suppress certain hormones, particularly testosterone. So people can have sexual difficulties, not be able to function, have, no libido. Women might stop menstruating, so it affects fertility. And that may sound more like a quality-of-life issue, but we know that long-term, suppressed testosterone also leads to fatigue and may alter bone health. So there are times when opioids are helpful. There are times when they're not so helpful.

(44:05): So just like we had that conversation about the balance of steroids, we need to have this question about the balance of opioids. But for many people, a low dose of opioids to relieve their pain so they can sleep, so they can get exercise, really important. And then it's always good to check your sleep hygiene.

(44:25): Are you taking a nap? If you take a nap in the morning, that's okay, but no naps in the afternoon. That totally messes up your sleep cycle in the evening. No caffeine. I just drank three cups of coffee. No coffee in the evening. No chocolate in the evening. Chocolate's got a lot of caffeine in it.

(44:44): Try not to remember the bed is only for sleep and sex. Don't watch TV in bed because that gets you activated. Try not to use your blue screens like your tablets and your smartphones. Don't keep them by the bedside. So lots of important messages about sleep hygiene. That was kind of a roundabout answer to your question, but you had another one.

 (45:09): [Audience]: Yeah, actually. I don't know how much you can speak to it, as I'm also trying to avoid pills or anything like that, and what you do is more science-based. Are there any more natural or holistic type things you might recommend even if you don't have hard science on it? If I can help myself, that's less invasive or hard on my body,-

(45:36):  ... I'm willing to give it a try. And then I can always go up to go back to a morphine and try them at all, different things like that, where I was just prescribe Neurontin right before the conference, but I didn't have a chance to research it. And I don't just blindly pop pills. So if there's anything you might or point me in a direction to research it more myself. I've had family members that pointed me to articles on certain natural oils. I have incredible burning in my feet. If there's anything you could suggest or direct me in a certain way.

(46:11): [Judith Paice]: So I do try to review the literature related to integrative medicine, and I kind of call... All of that used to be called complementary and alternative, but we're understanding it's not really alternative. And when you think about it, a lot of the drugs that we use today came from plants and products, like aspirin comes from the bark of the willow tree. And digoxin, which is a medicine we use for heart issues all the time, comes from a flower, excuse me, called foxglove. So many of our products today come from natural... And some of you may have used Taxol which came from the yew tree originally.

(46:52): So integrative kinds of therapies. I've mentioned quite a few, frankly. We talked about acupuncture, and there are more and more studies supporting the benefit of acupuncture. And because I see people who have already tried a lot of therapies, so a lot of the folks I see maybe didn't get complete relief from their acupuncture, but maybe they got some improvement from fatigue. They got some benefit. Most people get some benefit from acupuncture.

(47:20): And in fact, in our oncology clinic, we have an acupuncturist giving acupuncture while people are getting their infusions. We also have a massage therapist who comes in while people are getting their infusions. So I fully believe in those kinds of therapies and have used some of them myself.

(47:39): In terms of herbal kinds of products, I've mentioned Icy Hot and Bengay. Those are menthol. And when we talk about science, they've isolated a receptor now that is called the TRIPM8 receptor, and this is where menthol binds. So there is science for using things like Bengay and Icy Hot, and there are people working on more boosted kinds of products. But those provide relief for some people as well.

(48:07): Most topical formulations do not enter the bloodstream, most, and so you don't run into generalized adverse effects as a result of topicals. Things like Tiger Balm and other, even Blue-Emu, which I am not clear exactly what's in it, but some patients swear by it. Some of the products have camphor in them, which, again, can be useful topically for neuropathic kinds of pain.

(48:38): I've mentioned very briefly that Calmare. I think it's intriguing. It sounds a little bit like what you were talking about in Indiana with the gloves. It's an electrical, it's basically giving electrical treatments to the affected area. It's just sad to me that it's so very expensive. I'm distraught by that piece of it. Purportedly, they'll negotiate with folks, but it still makes me concerned.

(49:07): So the topicals that I told you about where they make compounded type things, those are pills that have been made into gels. So you're not getting the systemic effects, it's just working topically. So for neuropathic pain, there have been studies that have been conducted like by Mayo Clinic and others demonstrating that baclofen, amitriptyline, and ketamine compounded into a gel can be helpful for neuropathic pain.

(49:40): [Audience]  Hi, it's been four months since I had my stem cell transplant, and I'm finding with the pain medication, the doctors, I'm from Florida, and they don't want to give it to you. They're scared. Even in a cancer center like Moffitt, they're afraid that even the anesthesiologist that did my bone marrow biopsy said, "I don't want to lose my license" kind of thing, which is kind of crazy.

(50:11): But if you do manage to get a prescription, then the pharmacies don't carry it because people were robbing them, and this and that. So you're carrying around a piece of paper that's of no use, and you can't get the medicine. I'm just wondering, is this a national thing? Is anything being done about it for cancer patients through any particular organizations.

(50:39): [Judith Paice]:  So this is a huge problem. And unfortunately Florida, more than many states, has been affected because there was one county in Florida in the south, Broward County, where there were a ton of pill mills going on. You could go into these little strip mall kinds of offices and pay unreputable doctors lots of money, and you would get a prescription or the actual drugs. And so unfortunately, Florida clamped down because of a few bad actors, and that's made it very hard for people.

(51:20): I strongly encourage you... If you're at Moffitt, do they have a pharmacy at the hospital that dispenses for outpatients? Because most of the pharmacies that are affiliated with the hospitals carry reasonable supply. I see the exact same thing here in Chicago. I'm sorry to tell you this is going to probably get worse before it gets better.

(51:42): You probably heard about the CDC recently, just in March, releasing new guidelines about opioids. And even in those guidelines, it says it's not for cancer patients who are at the end of life or cancer patients who are in active treatment.

(51:59): But what about survivors? They believe these guidelines should be applied to survivors. And the guidelines, some of it makes really good sense. We should be looking at prescription monitoring programs and doing urine toxicology. And I do them on all my patients. So nobody thinks that I'm singling out one group of individuals. And I have found times when people are negative for the opioid I'm prescribing, but positive for cocaine, and then we have conversations and interventions. But unfortunately, these new guidelines are going to make it even harder. They say that the maximum daily dose of pain medicines should be 50 milligrams of oral morphine per day. So that would be, if you're taking hydrocodone, for example, that's five tablets of the 10 milligrams. If you're on the morphine immediate release, 15 milligrams, that's three a day.

(52:57): So they're really making it difficult for folks. I can tell you that behind the scenes, a bunch of our organizations are trying to work to fight this, but boy, it sure would be helpful to hear the voice of the persons who are really suffering. So let your congressman know.

 (53:17): [Audience]: I was wondering if you've ever heard of something called Biomat? I'm not a crystals and pyramids kind of person, but I just met up with a friend I hadn't seen in many years. She had horrible arthritis and Parkinson's, and neuropathy, and she was unable to drive, function. She was an active tennis player, active golfer, couldn't do anything. And she got one of these Biomats, and she is driving and golfing and playing tennis, and you wouldn't even know she had Parkinson's, and her neuropathy is gone.

 (53:53): [Audience]: Biomat, and it's a very expensive little toy. I looked at researching. And I just found this out two days ago, so I haven't done the research myself, but it's a mat filled with amethyst. And it heats up and you lay on it, and it has negative ion therapy and it goes through your body. And so I haven't done the research and I haven't heard anybody else who's heard of it, but my husband has neuropathy and I'm willing to try anything to help him. So it's something to look at. Unfortunately, I did see that it cannot be used by someone who's had an organ transplant and is on anti-rejection drugs. But other than that, you just have to look it up, Biomat.

(54:34): [Jackie Foster]: We'll take one more question just because of time, but I'm sure Dr. Paice would be able to stay. So she had her hand up first. But if you have questions, you can talk to Dr. Paice afterwards. She'll stay for a few minutes. And I know we're out of the handouts, but if people are looking for those, I would check in at the registration desk. They should be able to get you more copies of those. Unfortunately, I'm out in the room here.

(54:58): [Audience]: How long after the transplant can you see these chronic effects show up? Does that matter around the age that you got the transplant?

(55:05): [Judith Paice]: So for most people, the side effects occur pretty much through the transplant period or in the immediate post-acute period. The neuropathy, for example, the other symptoms of GVHD that I mentioned, the one that can occur later is the avascular necrosis and the bony complications. But things like the peripheral neuropathy or the other side effects generally occur from the beginning. And so you don't usually recover from the transplant, and then two years later, all of a sudden get neuropathy, unless you're getting new medications or you have a new medical problem. Remember that diabetes can cause peripheral neuropathy. People who drink a lot of alcohol can develop neuropathy. Other drugs like the fluoroquinolones, which are different antibiotics, like ciprofloxacin in, for example, can cause neuropathy. So there's lots of other things besides the medications that are used for transplant.

(56:09): [Audience]: So you're not saying that it spontaneously, after a certain amount of years, it doesn't-

(56:15): [Judith Paice]:  It doesn't all of a sudden, boom, you wake up and you have neuropathy. No. No, no. The one that can occur is the bony complications, the avascular necrosis.

 (56:24):[ Audience]: [inaudible 00:56:25] that happen much later?

(56:26): [Judith Paice]: That happens, again, dependent upon how long you're on steroids, the dose that you're on steroids, the duration. Yeah. So that's highly variable. And also how young you are versus how older, your blood flow, etc. So, thank you. Thank you all so very much. And Jan's right. I'm happy to stay up here and answer any individual questions you may have. But thank you for your attention this morning.

(56:50): [Jackie Foster]: Closing. Thank you.


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