Strive to Thrive! How to Protect Your Health After A Transplant Using Donor Cells (Allogeneic Transplant)
July 11, 2020 Part of the Virtual Celebrating a Second Chance at Life Survivorship Symposium 2020
Presenter: Areej El-Jawahri MD, Director of the Bone Marrow Transplant Survivorship Program, Massachusetts General Hospital
Presentation is 41 minutes with 16 minutes of Q&A. Download Speaker Slides
Summary: Learn about medical complications that can develop months or years after an allogeneic transplant. Learn how you can minimize the risk of developing problems and get appropriate treatment if a complication occurs.
- Allogeneic stem cell transplant recipients are surviving longer, and it is necessary to address potential health complications which can last upwards of 15 years after transplant.
- Survivorship programs can be found at many transplant and cancer centers or your primary care physician can coordinate your care after allogeneic stem cell transplant.
- Fatigue is common after allogeneic stem cell transplant and can be successfully treated through exercise, sleep, and cognitive behavioral therapy (CBT).
7:14 Survivorship care for allogeneic stem cell transplant includes treating late effect conditions, screenings for secondary cancers/recurrence and actively looking for any psychosocial issues.
15:26 Survivorship care includes mental health; most stem cell transplant patients will experience depression and or anxiety due to the trauma and stress of transplant and late effect chronic conditions.
19:33 Caregivers of stem cell transplant patients experience burnout and often struggle with changes to their relationship with the patient, caregivers should seek out additional support to cope.
21:16 The financial impact of stem cell transplant is significant, and a social worker can help navigate these issues.
23:06 Stem cell transplant survivors should take steps to improve overall health through lifestyle and diet to aid better outcomes.
25:30 Radiation and chemotherapy agents are the primary cause of late effects for allogeneic stem cell transplant survivors.
28:42 The most common areas impacted by allogeneic stem cell transplant are the bones, heart, lungs, hormones as well as sexual function.
36:04 Fatigue is also common for stem cell transplant survivors and can be successfully treated through exercise, sleep, and cognitive behavioral therapy (CBT).
37:10 Stem cell transplant survivors are at a slightly higher risk for secondary cancers and should do regular screenings for skin, breast, colon, and other cancers.
37:57 Work with your care team to quickly address neuropathy and eye issues with a specialist who understands cancer and stem cell transplant.
39:45 Chronic GVHD can be the cause of many issues for stem cell transplant survivors and should be ruled out by specialist who know about this rare disease.
41:14 Use reputable cancer and transplant resources to stay informed about after effects of stem cell transplant and avoid information from random sources.
Transcript of Presentation
00:00 [Sue Stewart] Welcome to the workshop, "Strive to thrive, how to protect your health after a transplant using donor cells". My name is Sue Stewart and I will be your moderator today.
It's my pleasure to introduce to you today's speaker, Dr. Areej El-Jawahri. Dr. El-Jawahri is director of the Bone Marrow Transplant Survivorship Program at Massachusetts General Hospital and assistant professor of medicine at Harvard Medical School. Her research focuses on improving quality of life for patients with blood cancers and for their families. She's investigating patient reported outcomes and developing interventions to enhance patient-centered decision makings in improved care for patients with blood cancers.
Please join me in welcoming Dr. El-Jawahri.
00:52 [Areej El-Jawahri] Good morning. Thank you all for joining us, and I wish we had, obviously, this symposium in person to meet all of you, but I'm excited that we're able to at least connect online and discuss some really important topics that affect the lives of our patients and their families going through transplant.
So I hope that this talk will give you actually a very broad overview of survivorship issues affecting patients as well as families, and to really give us a sense of other areas within, actually, even this symposium that can help you think about areas to focus on during this conference, with a lot more talks that are specific to some of these issues.
I will start by talking about why should we talk about survivorship care and talk a little bit about who's able to provide survivorship care for transplant survivors, common issues impacting transplant survivors. Again, we are going to focus on allogeneic transplants, specifically on patients receiving donor cells from a donor. We'll talk a little bit about what you can do to protect your health, and a little bit about living with chronic Graft-versus-host disease or GvHD, and that will be a topic that's also highly advertised in other talks as well.
Survivorship Care After Allogeneic Stem Cell Transplant. What Changes After Transplant?
02:23 So, first question is why should we care about survivorship care. We know that we should care about survivorship care because we have a lot more survivors living after stem cell transplantation. In fact, in 2030 we anticipate having greater than 300,000 transplant survivors. And let's be very explicit. That means we're doing a good job. That we have more and more patients going through this very intensive treatment and getting their life back and are cured of their underlying disease and at the same time, we're obviously dealing with important health issues that we need to address.
Just to give you a sense, about 15% of our transplant survivors are aged 18 or less and the bulk of our transplant survivors, this growing population is 60%, so between 18 and 59. So that is the age group that is really growing in terms of transplant survivors. We think about this age group, this is also an age group where we accept obviously a long-life expectancy and so we definitely need to think about the survivorship issue. We have growing survivorship population; the good news is that we're doing better with transplants and more and more patients are being cured of their underlying disease. At the same time, patients are living longer which again is a good problem to have. But as patients survive longer, we need to address potential health complications that come up.
We also know from the literature that 40% of transplant survivors will develop some health conditions that require attention 15 years after transplant. We also know that quality of life and life expectancy for transplant survivors is less than what we see in the normal population. As a result, paying attention to survivorship issues has potential implications for both improving the quality of life, the lived experience of our patients, as well as their life expectancy. More importantly, and I don't need to say this to this audience, this is something that patients and families feel very strongly about.
This was the survey of transplant survivors asking them about what aspects of their life has changed since the transplant. You will see here in this table that there are a lot of aspects of life that are reported as somewhat of a problem or severe problem for transplant survivors, including sexual health and intimacy, fear that the illness may come back, fatigue one of the most common if not the most common symptom that our transplant survivors report, concerns about relapsing, sleep difficulties, feeling uncomfortable about changes in physical appearance, being less able to provide the financial needs of my family and the list goes on. I show this list just to show that our survivors are struggling with a lot of different issues across many domains of survivorship care. And so, this is really the reason why we should be caring about survivorship issues and paying a lot more attention on how to improve and address these issues.
Quality of Life and Emotional Well-Being of Transplant Survivors
05:39 These are some data also about quality of life and emotional well-being in transplant survivors. One of things that we do know is that depression, anxiety and emotional distress, in general, are common in transplant survivors. We should also say that emotional distress doesn't have to be a clinical diagnosis of depression or anxiety, but it could be feeling down or feeling worried or feeling anxious in a way that interferes with real life in a different way than clinical depression or clinical anxiety.
We also know that pain is an important symptom impacting our transplant survivors and this is the point that we'll talk about some more, when we talk about chronic Graft versus Host Disease. But we know that GvHD is an important risk factor for a lower quality of life.
So, I'm going to spend a little bit of time to orient you to this graph, but this graph is looking at quality of life and emotional well-being. Higher scores here indicate better quality of life than better emotional well-being. And what you see here in these shades of blue is the severity of chronic Graft-versus-host disease with patients that are having more severe chronic Graft versus Host Disease, having lower quality of life, lower emotional well-being. And we see that across multiple domains of quality of life and emotional well-being. I should say that we also know that this is slightly lower than what we see in the normal population. So clearly this is an issue that impacts the lived experience of our transplant survivors.
Components of Survivorship Care for Allogeneic Stem Cell Transplant
07:14 So, when we talk about survivorship care, let's take a moment to think and talk about what are we talking about when we say survivorship care. There are multiple elements to survivorship care. One important element is thinking about prevention, both prevention of recurrence or new cancers, as well as late effects. And I'm going to talk a lot more about late effects, medical side effects that we are seeing from patients.
Surveillance is also an important issue. Surveillance means that we are actively looking and screening and making sure that we are addressing issues that impact survivors including surveilling and screening for secondary cancers, assessing and actively looking for the psychosocial side effects of survivors.
The first component is intervention. What do we do about this, to really impact both cancer treatment and its side effects. I can't emphasize enough the importance of coordination of care. As many, many of our transplant survivors are coordinating their care outside of their transplant setting and they are of course, in that context, having major issues because they are away from their transplant center. When we think about coordination of care, we're talking about a lot of different providers. We're talking about your primary care providers and primary care clinicians. We're talking about your transplant clinician and transplant team and how do we coordinate care between the transplant team and the primary care providers. But we're also talking about your eye specialist, your dermatologist, your clinician who's helping a specialist who's helping managing a specific complication related to transplant.
In my experience, one of the most common things I see is really difficulty in terms of coordination of care. So really, adequate survivorship care is being able to really provide a way to comprehensively address the issues that affect our survivors and to bring all these providers together to have a really good conversation about what to expect for the future and how to help support patients and families.
I will talk to you a little bit about what you can do to promote also good survivorship care or seek out the survivorship care for you guys, so that will also be important.
Who Is Able to Provide Survivorship Care? A Survivorship Care Plan after Allogeneic Stem Cell Transplant
09:56 So, I guess the next question is, who is able to provide survivorship care. Who can help us manage the needs and the growing needs of our transplant survivors? I will say that there are multiple different models for providing survivorship care in oncology. A lot of times, survivorship care falls on primary care physicians, especially survivors of breast cancer, for example. Part of the reason why, is the primary care physician or primary care clinicians are incredibly qualified to really address a lot of the issues regarding preventative medicine, how to reduce risk of cardiovascular disease, how to enhance your lifestyle factors, for example, as well as how to help manage and screen for cancers. So, they have the expertise to help address a lot of the survivorship concerns.
For transplant survivors, especially allogeneic stem cell transplant survivors, there are a lot of issues that do require specialty involvement. And so, a lot of transplant centers across the country have a survivorship program just like we do at Massachusetts General. Some of them have a survivorship program that allows you to call in. And now as we are living in the COVID pandemic, many of them are transitioning to really thinking about innovative ways to deliver survivorship care including telehealth and virtual visits and zoom visits, which I think are only going to expand in survivorship. Nurses who are trained in survivorship issues obviously are also very capable to address survivorship care.
So, the models are different and they're different across the country and they're different depending on the transplant center that you go to. There are also long-standing survivorship clinics for all of cancer survivors, not just for transplant survivors. There are programs that are focused on cancer survivors in general. What I would say is, it's important for you to know that you should really be asking your transplant team, especially if you are leaving the transplant center and going to a community site where you're going to be followed by community oncologist or followed by your primary care physician, it's really important to ask your transplant team for a survivorship care plan.
A survivor's care plan provides information, details about the treatment that you received. Not just, "This is the type of chemo I received", but "These are the doses I received", so that a primary care physician or an oncologist anywhere can look at that and say, "Okay, this gives me a sense of what this patient has gone through and what are the risks that I need to watch for over time". Survivorship care plans usually outline some of these long-term risks just from an education perspective as well. Often, they have actually a list of the test that people may need over time to maintain their health. I would urge you all to really think about asking your transplant team about getting into survivorship care plan, even if you've received a transplant long time ago, because it is helpful in terms of having that information to empower your local clinicians to provide the best possible care.
Common Issues Impacting Allogeneic Stem Cell Transplant Survivors
13:18 Let's transition and talk about the common issues impacting transplant survivors. A lot of these issues are being addressed in detail across different lectures and sessions that you guys may already be signed up for. But I'm going to highlight those here as a broad overview. And I know that they are probably going to resonate with a lot you.
I'm going to start by talking about the emotional impact because I do think this is something that's really, really under-addressed in medicine. I really think it's a really important piece that we need to focus on. So, I'll talk about the emotional impact of transplant on patients. The effect on care groups, I'm sure there are a lot of family members and loved ones that are on, as well, for this symposium. I think we cannot... This is obviously a transplant and the illness resulting into transplant impacts the entire family, and we do know that our transplant survivors get the majority of their care by their loved ones and by their caregivers. So, we'll talk a little bit about that.
We'll talk a little bit about the financial impact, obviously going through something as intensive as a stem cell transplant. You will hear the term "late effects" over and over again. Late effects refer to basically long-term medical concerns that we need to be thinking about when it comes to exposure to chemotherapy, to radiation, to the type of transplant you receive. Lastly, we'll talk about issues related to chronic Graft versus Host Disease.
Again, actually all of the topics that I have on this list do have other sessions within this symposium that you should take advantage of, especially if it's an issue that's impacting you. There are talks on emotional impact, there are talks on effective caregivers, I believe on Tuesday, there's definitely aspects of financial concerns and return to work as well as some specific long-term medical effects on chronic Graft versus Host Disease.
Emotional Impact of Allogeneic Stem Cell Transplant
15:26 So, we'll start with the emotional impact. As we've talked about, sadness and depression are common in patients who have gone through a transplant. Anxiety, and along with that is trauma, a lot of the literature suggests that transplant is actually a traumatic experience for a good proportion of our patients who go to transplant. Up to 40% of patients report clinically significant post-traumatic stress symptoms up to three months to six months post-transplant, so clearly this is an event that has an acute stress and leads to acute stress reaction.
Trauma is experienced by feeling a need to avoid certain environments, feeling hyper vigilant. There are a lot of symptoms of trauma, but clearly this is something that we know is important to think about and screen for in transplant survivors.
There's clear fear of recurrence, obviously after going through such a traumatic experience, fear of the cancer coming back, essentially. And there's a lot of just sheer emotions, anger, guilt, and these are emotions that need to be processed.
I often tell my patients that actually during transplant, most people kind of have their fight or flight response on, meaning they're trying to get through the next day and they're really focused on getting through the transplant. So often, we actually don't process these stressful experiences until we actually get through the entire transplant. And maybe months or even sometimes years out, we do feel the emotional toll of this. For those who develop complications as a result of transplant, are those who have chronic Graft versus Host Disease. There's also this difficulty in dealing with the fact that we have sort of traded an acute illness, let's say like leukemia, with sort of a chronic condition that's really impossible, I would say, to understand before going through a transplant, something like chronic Graft versus Host Disease.
So, there's a lot of feelings and emotions that come with that. There's a lot of burnout that comes with that and I highlight that mainly to say that, one, we should know and normalize that experience for our transplant survivors, that you're not alone, that there are others who are experiencing a lot of these range of emotions. Many of these emotions are actually normal and should be experienced in full. The times we worry about these emotions and these feelings is a time when they escalate to the point of interfering with your daily life. And when that happens, it means that we really need to be addressing them in more proactive ways and need to be thinking about how do we help you cope most effectively with a really, really difficult life altering experience.
Negative and Positive Emotions from Allogeneic Stem Cell Transplant
18:31: You know, a lot of the research is focused on what we call "negative emotions", so sadness, anxiety, worry, PTSD. But I do like to talk about also the idea of positive emotion that often my patients report. Feeling of gratitude and growth and even acceptance after going through this so obviously a stressful experience can make us also grow in many ways. Not that we would ever choose to go through a stressful experience to grow, but there are a lot of positive emotions that can come out of an experience like this as well. Not everybody experiences them, and the reality is, sometimes processing our negative emotions can help us get to a better place and maybe get to a place of gratitude and acceptance over time.
Effects on caregivers. I know there's a whole session on caregivers that I believe is on Tuesday. But I will say that caregivers provide the majority of care of our transplant survivors. They have an incredibly stressful job and there's a lot of chronic caregiving. So, it's not just caregiving through a diagnosis of leukemia, let's say in transplant, but especially i.e. even after in the context of recovery and chronic GvHD. There's just a protracted course of caregiving that's involved.
Emotional Impact Effects on Caregivers after Allogeneic Stem Cell Transplant
19:33 As a result, there's an immense caregiver burden. It's a burden on our caregivers. At the same time, I think the other important piece is how do we think about caregivers, the impact of this burden on patient-caregiver relationship. How do you transition from having a patient in a caregiver relationship to really having a loving partner relationship again? How do you transition from being a caregiver to having your normal relationship with the one that you love? And that's a really important transition, and there are a lot of resources to help our patients and caregivers in terms of thinking about that. But that's an important piece that we need to think. And ultimately, any of these caregiver burdens can have negative impacts on caregiver health but our goal is to really try to get patients and caregivers into a better life. So, survivorship doesn't only impact patients but also caregivers.
I think for caregivers asking the question, "How do you take of yourself as a caregiver?". Again, I do encourage caregivers to go to the session about this. There's a lot that you can do to allow you to have the stamina to be a caregiver for a long time, including setting up an adequate support system for yourself, knowing the type of support that you need, giving yourself a little bit of time and space despite how difficult it is to do that, prioritizing and considering what you can let go. Again, there are a lot of strategies we use to help caregivers prioritize and think about this and I would encourage you to attend the session on caregivers, this is a topic of interest.
Financial Impact of Allogeneic Stem Cell Transplant
21:16 The financial strain of transplant, and in illness in general, cannot be underestimated. I do think that often there are a lot of resources out there. First of all, I should say it's a difficult topic to talk about and often clinicians, doctors, nurses are not asking about it and we should be. We should be asking our patients and their family members how they're getting day to day. Obviously, through an illness, taking off from work, especially in the era that we're living in now.
The reality is, what I've learned about financial burden is that there are often a lot of resources that we may not know about and the best way to really try to know them is to ask the questions. I know it's a hard question to ask but if you are experiencing financial strain, asking for a financial assistance screen, asking to meet with the social worker to talk about some of these issues and to mobilize resources, most of our transplant centers do have resources that are accessible that can help patients and family get through this, through a lot of actually non-profit foundations to support patients and families.
There's a lot to know legally, obviously. Return to work is a topic that's also discussed in this symposium. I think it's beyond sort of the scope of me being able to address it in a few minutes but I think the thing to know is that there are a lot of legal protections for patients going through a hard time, as well as family members. Often knowing what your rights are is helpful when you're actually talking to your employer about financial and return to work and employment concerns.
Long Term Medical Concerns for Allogeneic Stem Cell Transplant Survivors
23:06 So, there's a whole list of long-term medical concerns. I show this list, and I'm going to walk you through some of this list, not to scare you, actually I'm going to spend a lot of time talking about that, but to say that there are potentially a lot of organs in our body that could be impacted by transplant. Whether it's heart issues, lung issues, hormonal issues, bone health, fatigue, some of the sexual side effects that we talked about, chemo-brain, all of these are real concerns. Not everybody is having all of these concerns, but they are real concerns.
I think this is the most important slide of the presentation. When I show this list of long-term medical concerns, I think the immediate thought is, "Oh my God, I am so anxious about all of these, could this all happen to me?". I think the reason why I say this is the most important slide is the whole point of survivorship is to really empower transplant survivors, patients to advocate for yourselves. To take the best possible care of yourself, to avoid this long list of medical problems. And in most circumstances, we are able to do that.
So, I think the things to remember are these complications, despite the fact that I'm highlighting them now, are still relatively rare, and I'll tell you how common they are as we go through with them. Number two, and more importantly, if we educate ourselves about them, we can take better care of ourselves and prevent them. That is why these are important. If we know what we can do from a modifiable perspective, that can make things better, that that's what we should be doing.
The reality is we can't change the fact that we needed a transplant, we can't change the fact that that's an experience that we had to go through. What we can change is how we modify the other risk factors that could impact our cardiovascular health, for example. So please, please, please, don't let the anxiety about these long-term medical concerns impact your goal. The goal is to be empowered, to be knowledgeable about this, to know what you need to be thinking about and to know how to take better care of yourself as a survivor.
Risk Factors for Developing Problems after Allogeneic Stem Cell Transplant
25:30 So, what places survivors at risk? The most important thing to know is that the intensity of the chemotherapy and radiation treatment really matters. Some of you may have heard the term "myeloablative" versus "reduced intensity or non-myeloablative" conditioning. Myeloablative refers to high dose chemotherapy or high dose chemotherapy plus radiation, the high dose transplant. Sometimes people use the word, myeloablative transplant versus a mini transplant, when lower dose chemo and radiation is used.
So if you don't know if you had a myeloablative or reduced intensity transplant, it's helpful to know that, because the extensive chemotherapy you got high dose, the extensive radiation if you got really high dose total body irradiation, matters. If you ask for a survivorship care plan, that will all be in there so that will help you kind of get a sense. But that seems to be a big driver of some of the medical concerns that we have. So, it's helpful to know the extent of treatment you have received.
It's also helpful to know prior exposures to chemo and radiation, which is again, a helpful thing to have in a survivorship care plan because you and I are going to be looking at the doses of chemotherapy. You're not going to be looking at the amount of radiation, but an informed clinician can look at this and can kind of quantify your risk of having certain complications. For patients with chronic Graft versus Host Disease, exposures to corticosteroids are in many months to years, is an important factor. Chronic suppression of immune system by just a lot of immunosuppressive drugs as a result of chronic Graft-versus-host disease is also a risk factor.
What other risks to consider? The reason why this question is really important is really our long-term risk is not just driven by transplant. Transplant is one factor out of many, many, many factors. That impacts the risk of for example, heart disease. So other past medical issues, obviously impact how our body deals with high dose chemotherapy. Family histories of early heart disease, cancers or diabetes can also increase our risk.
More importantly, lifestyle factors that we can modify, like diet, exercise, extensive support that we have like how we're coping with our illness. Habits, smoking, alcohol and drug use obviously are things that impact that. And I would argue that those last two factors, actually lifestyle and habits are where we need to make the most movement in terms of reducing the risk of complications because we know that these are the primary drivers for a lot of the late complications that we have.
So if there are three things that I do want you to focus on in terms of long term medical effects, it's heart effects, bone health, because those are the two that are often under-diagnosed and paid less attention to, and some of the psychosocial effects and emotional health that we talked about.
Heart Problems after Allogeneic Stem Cell Transplant
28:42 When it comes to heart effects, the biggest thing we worry about over many, many, many, many years, so this is not immediately after transplant, we're talking about keeping you healthy forever, is heart disease. Again, if you look at the risk factors that I have listed here, I have smoking, diabetes, sedentary lifestyle, high blood pressure and cholesterol, as well as obviously an ablative transplant or chronic GvHD as well.
But a lot of these factors are things that we can control. We can help control and advocate for a good control of our blood pressure, cholesterol, for our sugars. We can help by not smoking, we can help those that are taking both tobacco and marijuana, as well as by making sure that we are exercising. Those risks are modifiable risks that can help us reduce our risk for heart disease.
So, what can we do? Making sure that these are addressed, as I just mentioned, and really talking to your doctor about whether you need a heart ultrasound or stress test. Again, if you have a survivorship care plan that you got from your transplant team, even your primary care doctor can look at that and can say, "I know that your risk is only mild and if you do all of these things you don't have to worry about having an ultrasound or a stress test". On the other hand, if you've got high dose chemotherapy and high dose radiation, your primary care doctor may want to give a stress test or an echo. So just know there are things we can do to watch for any problems with heart disease, to address it before it becomes an issue, and that we control many of the factors that increases our risk of heart disease.
Lung Problems after Allogeneic Stem Cell Transplant
30:17 Lung effects are actually relatively rare from transplants. They're primary driven by a lot of radiation to the chest and certain chemotherapy drugs. The biggest risk factor that we can change is smoking. Smoking is absolutely your enemy post-transplant. Smoking, both tobacco and marijuana, can cause lung fibrosis, scarring lung, as well can cause inflammation on the lungs, especially after an allogeneic stem cell transplant, even chronic Graft-versus-host disease in the lungs.
So, what can we do? No smoking or vaping, avoiding getting respiratory infections as much as we can, and I know that's probably anxiety provoking in the context of what we're talking about with COVID these days. I will say that we have to be careful about respiratory tract infections, but we can't live in a bubble our entire life. It's about being thoughtful and conscious about our environment, and it's about asking our clinicians about how do we protect ourselves in the best way possible.
For some people they may need a pulmonary function test, this is not for everybody, especially patients with high risk. And so, your doctor can figure that out based on the amount of chemo and radiation that you have received. The pulmonary function tests are just breathing tests that can help us kind of detect if there's any change in lung function over time. And the reason why that's helpful is because we can potentially have some preventative strategies to avoid any problems.
Hormonal Problems after Allogeneic Stem Cell Transplant
31:56 Hormonal issues are huge. Early menopause, low testosterone are some of the main factors that actually impact sexual health and fertility as well. Thyroid hormone problems and infertility are a lot of the impacts that we actually see in our transplant survivors.
The biggest risk factor for hormonal issues are high dose chemotherapy and radiation, as well as older age. Obviously, infertility affects younger survivors. The biggest thing that we can do is screening for thyroid hormone problems. For those of you who are on the younger side, thinking about hormonal replacement therapy, both for men and women, it's worth thinking about. Because going to premature menopause or having very low testosterone early as an adult can have detrimental effects. Again, these are things that our primary care clinicians know, if they have a sense, and certainly your transplant clinicians know if we have a really good sense of the amount of chemo and amount of radiation you have received. Your job is to kind of advocate for yourself and remember these issues.
Bone Health after Transplant
33:09 So, bone health. I cannot, cannot really emphasize this enough. This is actually the topic that I think we don't do, we as in transplant physicians and transplant centers in general, don't do a good job at staying on top of bone health. Bone health gets impacted by high dose chemotherapy, by corticosteroids, so steroid treatment for chronic Graft versus Host Disease, by some of the drugs we use to prevent Graft-versus-host disease like tacrolimus, early menopause, thyroids. So, a lot of our issues surrounding hormonal issues can lead to bone health problems.
The probably modifiable aspects are smoking and lack of exercise. Weak bones can happen really early, so loss of bone health, bone mass can happen fairly early after transplant and it's important to detect early. I think every transplant survivor pretty much should be on calcium, vitamin D. I can't see a reason why you wouldn't be on calcium, vitamin D daily supplements. They're incredibly helpful for your bones. Ask your doctor for a bone density, identifying weak bones early can allow us to actually give you some medications to strengthen bones and keep them strong. Certainly, exercising and stop smoking. Bone health and keeping bones healthy is something very modifiable thing. If we detect bone loss early, we could act, we can prevent it and we can ensure that our survivors have better health of bones and less fractures and better long-term outcomes.
Sexual Health after Transplant
34:49 Sexual health, I will mention here, I know there are sessions that are focused on sexual health, I do want to mention because I think this is a topic, we don't discuss either. It's very common, 60% of men and up to 80% of women experience sexual health problems and intimacy issues after transplant. We should know that most survivors do not discuss these health concerns with their clinicians, and our clinicians are not good at bringing them up with their patients. So, it's important to keep those in mind.
I will also say that the common issues are very, very, very addressable. Most women who have vaginal dryness or chronic Graft versus Host Disease, men who have erectile dysfunction, these are things that we can really do a lot about. We have medical interventions, we have psychosocial interventions, we have ways to really enhance your intimacy and sexual health that have been proven in medicine. Big step of this is talking about it, so we can actually implement these strategies and try to get you the best care possible. Despite the discomfort of talking about sex, it's really, really important to bring it up.
Fatigue after Allogeneic Stem Cell Transplant
36:04 Fatigue is the most common concern that is reported in transplant survivors. It's multi factorial, there are a lot of issues that drive fatigue in our population. I think what we can do is to really... And I know there are sessions on fatigue here, but we need to make sure there isn't anything else going on when we see fatigue, so treat any underlying conditions.
The most helpful and the most effective way to combat fatigue is actually getting on an exercise program. I know it sounds counter intuitive, but data are very clear. People who exercise more regularly are less likely to experience fatigue symptoms. Getting a good amount of sleep, getting on a good sleep hygiene schedule, nutrition, exercise are the ways to help us deal with fatigue.
There are some behavioral strategies, like cognitive behavioral therapy, that have shown very good promise for fatigue. If you're having debilitating fatigue, this is something worth discussing, meeting the psychologist with expertise and what we call CBT, cognitive behavioral therapy.
Secondary Cancers after Allogeneic Stem Cell Transplant
37:10 I should say, secondary cancers always make people a little bit anxious, "Oh my gosh, am I going to have another cancer after what I have just gone through". Transplant survivors are only at a slightly higher risk of having secondary cancers. It's just important to stay on top of your cancer screening. This is the only thing we can do with this. Often, when we go through a transplant, we just forget about the mammograms, we forget about our colonoscopies, and that's understandable because you're going through a lot during that. But being able to at some point transition and say, "Let me see a dermatologist, make sure I'm staying on top of skin cancer screening", especially for fair skinned individuals, breast and colon cancer screening, are the things that makes the biggest difference.
Other Health Issues after Allogeneic Stem Cell Transplant
37:51 You will have talks about eye health and neuropathy during this seminar as well and it's an important thing to kind of keep in mind, that those are issues that affect some survivors. I will say that chemo brain mostly gets better with time. But you also can see a specialist to help you if this problem persists because it can provide you with some exercise, rehabilitation program or cognitive programs that can help address chemo brain issues.
Stay Engaged in Your Own Health after Allogeneic Stem Cell Transplant
38:24 The most important message here is to stay engaged in your own health, engage your primary care clinician in talking about how does this transplant impact my long term health. What can I do to optimize my health for the future? The best primary care clinicians are ones that pay attention to the type of treatment you got. If you have a survivorship care plan, please give it to your primary care clinician, it makes a big difference.
They will stay on top of your cancer screening, cholesterol, sugars and blood pressure, exercise. And ask for survivorship consults from your transplant team, ask for survivorship programs that are available in your community. Exercise, healthy diet, limit your sun exposure, do not smoke or vape and minimize alcohol intake. For alcohol intake, I would say talk to your doctor about what's appropriate because it is different for different people. If we do these things, I do think that we will see similar survival between our transplant population and the normal population, to be honest with you. These things impact the outcomes and the late effects that I talked about more than anything else.
Chronic GVHD after Allogeneic Stem Cell Transplant
39:45 I will end by saying there's a lot about chronic graft-versus-host disease that's out there. I know there are a lot of sessions on chronic graft-versus-host disease in this symposium as well. It's a common problem affecting transplant survivors and it can affect many organs or any organ as well, so mouth, skin and eyes. I think the hardest thing and the most important thing to remember about chronic Graft versus Host Disease, sometimes you would be experiencing something post-transplant and you go and see a specialist and they have no idea that this is chronic Graft versus Host Disease. It is a very rare disease and it's also a disease that impacts obviously a sub-population who have a transplant.
So, if you have a symptom that people don't know what's causing it, it is worth checking with your transplant team to know that it's not related to chronic Graft versus Host Disease. Any new unexplained symptoms, even if you're seeing somebody locally, it's helpful to know that it's not related to chronic GvHD. We know that chronic GvHD has an impact on quality of life as I showed earlier. It's really important to stay on top of self-care and managing your symptoms of chronic GvHD. I know that living with the uncertainty of chronic GvHD is really, really hard for a lot of people who are going through this, the ups and downs of living with chronic GvHD, and I know that many of you will take advantage of some of the talks about chronic GvHD earlier.
Reputable Resources for Help after Allogeneic Stem Cell Transplant
41:14 There are a lot of good resources out there to look for information that can help. I would say that Google is not your friend if you are going to non-reputable sources. Please go to the BMTInfoNet.org, cancer.net, cancer.gov, LLS has a good website as well, there are a lot of really good resources for survivors, I highlighted some of them here just so that you have them and know that they are the places to go for information.
With that, I will end that, and we will open up to questions.
41:52 [Sue Stewart] Thank you very much Dr. El-Jawahri. That was an excellent presentation, I know we all learned quite a bit for it. We do have some questions; we'll try to get to as many as possible. If you do have a question, please type it into the chat box.
42:05 [Sue Stewart] First question is, are vaccines safe? I had one for the flu two years ago and got very sick. Will the coronavirus vaccine make me sick? I'm 30 years post-transplant.
42:21 [Areej El-Jawahri] Yes, what a great question. Yes absolutely, and I appreciate knowing how far you are from transplant as well, that's very helpful.
Yes, vaccines are very, very safe. Sometimes people do have a robust reaction to a vaccine, and they feel unwell, and that can happen. That's not specific to transplant, I should say. A lot of people who reported they have allergies to vaccines come from that, a negative experience from a vaccine.
The flu vaccine changes slightly every year, so just because you had a bad experience with the flu vaccine once doesn't mean you'll get sick again from the flu vaccine. So, the flu vaccine, and most the COVID vaccines that we are looking at, are vaccines that are safe post-transplant. Obviously talk to your transplant doctor before getting the COVID vaccine but having COVID post-transplant is a lot worse than having a vaccine, and even having a little bit of fever after a vaccine as well, afterwards. So, yes, vaccines are generally safe.
Live vaccines are less safe and live vaccines should be discussed with your clinicians. With your primary care physician who will also know. We should say that the shingles vaccine, we know we have a new vaccine called Shingrix that is very safe post-transplant as well. That used to be a vaccine that we didn't give, the live version, because we felt like it may not be safe for transplant patients. So, yes, vaccines are safe and please get the COVID vaccine as soon as we have a COVID vaccine.
43:59 [Sue Stewart] All right, next question. What is your philosophy for someone who has a compromised immune system and is on immunosuppressive medication? Can I go out and do anything other than see my doctor? Or should I stay in?
44:16 [Areej El-Jawahri] Yes, I suspect this question is being asked in the context of COVID-19 and I hear you. It's funny that I've heard from a lot of patients saying, "The rest of the world is living like we do when we go through a transplant, the first 100 days especially". I think that knowing and being knowledgeable... There's no one answer for everybody. I will say couple of general things that we should think about in the context of all of this.
One is, let me answer the question pre COVID-19 or post COVID-19, when COVID-19 is not an issue. If you're on chronic immunosuppression, absolutely you could go out, absolutely you could experience the world, despite being on chronic immunosuppression. That doesn't mean being careless, so if you are going out with a friend who you know has the flu or not feeling well or has an infection, you should stay away from them. So pre COVID-19, that's what I tell people, is that yes, being on immunosuppression suppresses your immune system but washing hands and staying away from people who are sick is what we need to really stay as healthy as possible. We're not going to prevent having a cold for the rest of your life after transplant, and that's not the goal. It's really impossible to not have a cold for the rest of your life after transplant but minimizing some of these colds and flus is helpful.
Post COVID-19, I would say, it's more complicated. Being educated about what's happening in your community and what's happening in terms of the cases of COVID-19 in your community is helpful. Obviously, social distancing, wearing a mask currently and avoiding crowds is definitely the way to go. But I would say even if you are on immunosuppression, that doesn't mean living in a bubble in your house. Walking outside and getting some air and even walking outside with a friend while you keep safe distance is appropriate and should be done. I know that answer is complicated, and I know it's different for different people but those are the general things to kind of think about.
46:27 [Sue Stewart] Okay, next question. Can transplant affect the kidneys long term? If so, what are the common side effects and symptoms and is there a way to lower raised creatinine?
46:39 [Areej El-Jawahri] That's a great question. It's impossible to cover every possible side effects of potential transplant and some of them are rare. Rarely, transplant can impact the kidneys, mostly driven by either impact on the kidney during an acute transplant process, there was a kidney injury during the transplant itself where the creatinine went up and then it starts coming down. Many people have what we call slight elevation or even moderate elevation in creatinine and some acute kidney failure because of tacrolimus, one of the medications that we use for preventing Graft versus Host Disease. Because Graft-versus-host disease is such a disease that we want to avoid, and tacrolimus is the most effective medication, we actually tolerate a little bit of kidney injury to try to ensure that we don't get GvHD.
That being said, most people when you start tapering the tacrolimus, and the hope is to get people off tacrolimus, their kidney function actually does return back close to normal. In terms of what you experience, kidney disease is one of those things that you actually will probably notice nothing. It's not something that you would experience in terms of symptoms unless it's very, very, very, very severe and it's really end-stage stage kidney disease which presents with fluid retention, swelling in the legs, those kinds of things. But most people won't have that, and the most important thing is to just to check your creatinine and watch it. If people do have some damage to the kidney as a result of transplant, the goal then is very similar to other goals for other long term side effects or late effects is to minimize additional insults to the kidney by avoiding drugs that impact, medications that could impact, the kidneys negatively. By reducing tacrolimus when possible, by avoiding Advil and Ibuprofen products because they're hard on the kidneys.
So we do everything we can to minimize additional insults to the kidneys as much as possible and I will say, your primary care physician is absolutely a great resource for that and they are very good about referring to a nephrologist, the kidney specialist, early to make sure that we maximize the chance that no further damage happens to the kidneys.
49:01 [Sue Stewart] All right, next question. Can you comment on the success rate of reduced intensity allogeneic transplants as compared to full intensity transplants, with regard to disease progression, for overall survival?
49:17 [Areej El-Jawahri] That's a great question. It's disease dependent, so it's not everything for everybody. But I'll give you kind of a general idea about what we think about reduced intensity versus high intensity chemotherapy.
A lot of our data comes from leukemia, so I'm going to focus on leukemia in general but there are many different types of leukemia. Again, that question is probably very individual and personal. The reason why I say that is because not all leukemias are the same, not all lymphomas are the same, there are a lot of different aspects related to the disease that go into the estimate of progression-free survival and overall survival. It's helpful, if you're considering a transplant, to talk to the transplant doctors specifically about your particular case and how those risks go hand in hand.
What we have learned over the years is that first, older people and older people being greater than let's say 65 to 70, do not tolerate high dose myeloablative chemotherapy well. So, the risk of complications of high dose chemotherapy or myeloablative transplant in older people is very high. We just generally don't use them. So, if you are above 65, most commonly, you will not be getting an ablative allogeneic stem cell transplant from a donor, different from an autologous] stem cell transplant.
For people who are younger than 65, there have been many studies that have shown basically kind of a trade-off between the risk of the disease coming back ,which appears to be slightly higher when we use lower dose chemotherapy, at the expense of having slightly higher risk of complications from the transplant when you do high dose chemotherapy. Those two things tend to balance themselves out. And so, to answer your question specifically, while progression-free survival may look a little bit better in patients receiving high dose chemo, just because they're less likely to progress, overall survival generally has looked the same. The trade-off is, are we going to increase the risk of relapse a little bit at the expense of little bit more toxicity, and that's the balance, that's the general sense, again, though, I think this is a very individual decision. Because a young 21-year-old going through an ablative high dose chemotherapy transplant, their risk of toxicity or complications that are life threatening are very, very low, compared to let's say a 55-year-old with diabetes, hypertension, other issues. So, the answer to your question is we should definitely talk to the transplant doctor about your individual so that they can weigh the benefits and risks of myeloablative vs reduced intensity transplant.
52:25 [Sue Stewart] Next question. How often should I have a colonoscopy, is it more frequent than the general population?
52:34 [Areej El-Jawahri] That's a great question. For transplant survivors, generally speaking, you should be having a colonoscopy similar to the normal population. Which is why I say your primary care doctor or primary care clinician is the best person to manage a lot of the cancer screening. The general recommendation is colonoscopy every 10 years, unless you have some high-risk features. Obviously, those high-risk features have nothing to do with transplant, but if you've had polyps before, they'll ask you to come sooner. If you have family history of colon cancer, they'll ask you to come sooner for colonoscopies. So, there are other factors that are not related to transplant that also impact the normal population that could make you need a colonoscopy less than every 10 years. Transplant itself does not require you to do colonoscopies more frequently than the normal population.
53:28 [Sue Stewart] Okay, next question. Is it safe to travel, take cruises and go to different countries after transplant in the COVID environment?
53:40 [Areej El-Jawahri] It's a good question. I kind of want to go on a cruise right now but to be honest with you... I mean we have all seen the videos of obviously patients and families that are stuck on cruises and I think currently that is not a safe plan. Again, do I have data to prove that you? No, but if a family member asks me whether they had a transplant or not, whether they should go on a cruise right now, I would say absolutely, please don't go on a cruise now.
Things will change, this is not going to be our lives forever. I do know COVID adds a whole other layer of stress for our transplant survivors in a way that's very, very different than just everybody else. But I will say that I am very hopeful that sometime in the next year we will have a vaccine and life will slowly get back to normal. So, I would say, avoid cruises for now.
54:40 [Sue Stewart] Okay, next question. You correctly and repeatedly advised that patients ask their transplant team for various support measures. What if our team is not able or willing to provide the requested support? Our transplant hospital does not have a survivorship program.
55:03 [Areej El-Jawahri] Yes, it's a great question. It's a really important question. At a national level, we are working to fix that problem. The American Society of Transplant and Cellular Therapy program is incredibly invested in ensuring that high quality survivorship care is part of all of our transplant programs. I do think that we're doing better than we did let's say five, 10 years ago, but I still think we have room to grow.
I want to highlight that I think there's a whole move now towards thinking about how we can provide survivorship care through telehealth and telemedicine and virtual care and I do think that's here to stay. That opens up opportunities that we didn't have before. For example, someone who has had a transplant at a center where they don't have survivorship care could get a consultation from a survivorship specialist, for example, Mass General Hospital with me, and can be provided with at least some recommendations based on their overall health. So, I think paying attention to that is helpful.
I will also say the resources that I [inaudible 00:56:16] especially BMT InfoNet has a lot of information about survivorship that would be helpful to look at because it will help educate you and can educate your primary care physician about what you need. So, I do think that's an important aspect. The other thing you can do is just ask for general information about the type of transplant that you received, the type of chemotherapy that you received and obviously Sue and the BMT InfoNet team knows how to get hold of me. So offline, absolutely happy to schedule you for a survivorship consult with us at Mass General, but there are other places that offer that for survivors. It's also helpful to look for survivorship programs that are not part of transplant centers because often those are available in cancer centers in your community.
About 80% of the survivorship issues are the same. If you have chronic GvHD, there are other issues that need to be addressed. So doing a quick search to try to find resources locally is helpful. Looking through the resources on the websites that I gave is helpful, and I do think that's going to change and we will have more resources as we go. Again, I'm happy to fit people in for survivorship consults here, and I know that my colleagues across the country also are willing to provide that service, you just have to look for it and I know it's hard, but we should be doing a better job of advertising that.
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