Strive to Thrive! Protect Your Health after a Transplant Using Your Own Cells
Saturday, April 27, 2024
Presenters: Patrick Johnston, MD, PhD and Cecilia Merrigan, APRN, CNP, DNP, Mayo Clinic
Presentation is 40 minutes long with 19 minutes of Q&A
Summary:
In the years after having a transplant using your own cells (autologous transplant), complications can develop. This presentation describes possible late complications, risk factors for each complication, ways that you can help minimize the risks, and strategies for managing any complications that do occur.
Key Points:
- An autologous transplant increases your risk of later developing late complications that can affect many body systems, including your immune system, heart, lungs, bones, sexual health, mental health, and cognitive function.
- Key steps you can take to help thrive after transplant are maintaining a healthy lifestyle that includes exercise and a healthy diet, and staying up to date with vaccinations and revaccinations.
- Partner with your primary care provider to ensure you receive personalized screenings and monitoring, based on your unique risk factors.
Highlights:
(03:33): In the first year after transplant, your immune system starts to rebuild and revaccinations begin. Following a healthy diet and engaging in regular physical activity are important steps in helping your recovery.
(06:22): After a transplant, there is an increased risk of getting a second cancer, so it’s important to follow guidelines for cancer screening that are personalized based on the treatments you have received and your current health.
(08:56): To maintain your heart health after transplant, follow a healthy lifestyle and have regular heart health screenings.
(10:19): You can develop inflammation of the lungs after transplant, called pneumonitis. The risk factors for this include chest radiation that involves the lungs, bleomycin exposure, higher doses of transplant chemotherapy, and if you're at a younger age when you undergo transplant.
(11:49): Risks that affect your bone health after transplant include having a sedentary lifestyle, having early onset menopause, having certain rheumatologic conditions such as rheumatoid arthritis, prolonged steroid use, and being a female.
(14:14): There are a variety of options to try if you develop nerve issues after transplant, including medications like gabapentin or pregabalin, physical therapy, clothing choices, exploring acupuncture as a possible benefit, and warm foot baths.
(17:03): Sexual health specialists, medications, and hormones can help with sexual functioning after transplant.
(20:07): Mental health concerns after transplant are common. You are not alone, and there are many options for support. Call 988 if you are in a mental health crisis.
(23:36): Risks of worsened cognitive function after transplant include age, medication side effects, fatigue, depression or anxiety, and dietary deficiencies.
(25:51): Post-transplant, it's still important to have your caregiver resources, and to ensure your caregivers are getting the support they need.
(Please note that throughout this presentation, unless otherwise specified, the word "transplant" refers to bone marrow or stem cell transplants that use a patient’s own cells.)
Transcript of Presentation
(00:07): [Michala O’Brien]: Welcome to the workshop, Strive to Thrive! Protect Your Health after a Transplant Using Your Own Cells. My name is Michala O’Brien and I will be your moderator for this workshop.
(00:13): Introduction. It is my pleasure to introduce you to today's speakers, Dr. Patrick Johnston and Cecilia Merrigan. Dr. Johnston is an Associate Professor of Medicine at the Mayo Clinic College of Medicine and Science, and a Consultant in the Division of Hematology at Mayo Clinic. He specializes in stem cell transplantation and chimeric antigen receptor (CAR) - T cell therapy, and his research focuses on novel agents to treat lymphoma such as vaccines and biologic therapies.
(00:46): Cecelia Merrigan is a Nurse Practitioner who specializes in the care of patients with lymphoma at Mayo Clinic. She has been involved in the survivorship program at Mayo Clinic and has a special interest in assisting patients with their recovery after a stem cell transplant. Please join me in welcoming Dr. Johnston and Dr. Merrigan.
(01:10): [Dr. Patrick Johnston]: Thank you for that introduction. I am Dr. Patrick Johnston.
(01:15): [Cecilia Merrigan]: And I'm Cecilia Merrigan.
(01:17): [Dr. Patrick Johnston]: Overview of the presentation. We're here to talk to you about survivorship issues after an autologous stem cell transplant.
(01:26): [Cecilia Merrigan]: These are our learning objectives. We'll be going over some late complications that may develop after you undergo an autologous stem cell transplant, and then risk factors for each complication and ways that you can help minimize the risk and work with any complications that may occur.
(01:49): After transplant, you normally would come back for a three-month visit, so that’s the first 100 days. Your blood counts are returning to normal. We're watching for infections, you're trying to regain your strength, so every day performing a little more activity. You're trying to maintain your weight and your physical strength and trying to manage any side effects that are lingering after the transplant.
(02:17): [Cecilia Merrigan]: Once we get out of that initial phase after a transplant, we're looking at how we can begin striving after our transplant. At six months post-transplant, we will start the revaccination process. You may have heard about revaccinating all your childhood immunizations at this time. We'll also be continuing with regaining your physical recovery, meaning increasing your ability to do things you enjoyed prior to your transplant by increasing your ability to continue with activity. Those things together will help decrease your fatigue as well. And then finally we'll transition into looking at how we can recover mentally from the transplant process and the chemotherapy prior to that. That can be done with support groups, individualized therapy with a talk therapist, utilization of medications and looking at brain fog recovery, which generally improves over time as you continue to be more active.
(03:33): [Dr. Patrick Johnston]: What about the first year? We're looking at immunity. During the transplant you get chemotherapy and this lowers your immunity. Therefore, as Cecilia had mentioned, you will want to be revaccinated. One point of note, the influenza vaccine and the COVID-19 vaccination series are repeated usually earlier than that six month starting point.
(04:07): [Cecilia Merrigan]: Often people ask about, "How good is my immunity? When is my immunity back to normal?" I look at that on a continuum, with your immunity being at its lowest during the transplant and then each month that goes by, your immunity improves. When we look at you as a whole person outside of just your immunity, we're looking at how do we thrive and help support you thrive into a more normal pace of life. You're going to be at the center of the group of people that can help you thrive from here. You'll have a group of people that includes your primary care provider, which will provide you with supports to help you thrive. Obviously, your cancer provider, whether that be a hematologist or an oncologist, and any subspecialty providers to help with any complications that may occur. And your support system is important during this time, as it has been throughout transplant.
(05:17): [Dr. Patrick Johnston]: Healthy Diet and Activity. What about you? What can you do? You can make healthy food choices - fruits, veggies, whole grains, proteins - try and minimize processed food, try and look for a calcium and vitamin D rich diet. We often see lower calcium and vitamin D in our patients. I encourage my patients to try and increase their activity level every day, going out even beyond the year. So exercise, whether that be walking on a regular basis, participating in weight-bearing exercise or other activities such as biking, rowing, etc. Also, it's important to have good stress management, whether that involves meditation, other activities, mindfulness, or possibly even involving a therapist, and remembering how important sleep is for your recovery.
(06:22): [Cecilia Merrigan]: A common question that comes up after a transplant is, "What are my risks for getting other types of cancers?" Here we have it broken down so you can see what the potential risks are for these. These are the areas that may have increased secondary risk, depending on what your pre-transplant and post-transplant treatment may have been, and some ways to help decrease the risk of these despite what has happened in the past. Looking at skin cancer risk, we recommend a yearly evaluation by your dermatologist to remove any suspicious lesions and to identify those quickly. Always use sunscreen when out in the sun. Hats, sunglasses.
(07:14): Looking for secondary risk of leukemias, we would recommend continuing with yearly blood counts. That can be done by your primary care provider or your hematologist-oncologist. And then generally looking at healthy lifestyle to help decrease any secondary cancer risk within the liver and limiting alcohol use. Oral and cervical cancer risks. The best thing to do is get your human papillomavirus (HPV) vaccines, which are part of the post-transplant re-immunizations, maintaining pap smears regularly per your primary care provider and then breast cancer screening. Finally, we would recommend a yearly mammogram starting at the age of 40, or at age 30 or eight years after radiation, whichever one is first, if you have any radiation to the chest area.
(08:19): [Dr. Patrick Johnston]: You also should undergo standard cancer screening such as colon, starting at age 45 and every five years following that. If you have a family history of colon cancer, that may indicate for earlier screening, often three to five years earlier than the youngest family member who has been diagnosed with colon cancer. As well, with prostate cancer, you should discuss with your primary care provider if you should have a yearly prostate exam and possibly prostate-specific antigen (PSA) screening.
(08:56): [Cecilia Merrigan]: Heart health. Now we're going to move away from cancer screenings and look at heart health overall, for which we've already discussed exercise. The goal to help with increasing your heart health would be getting 30 minutes of exercise daily, five days a week, but you can start wherever you're at. It may be five days, five minutes a day, and then increasing it gradually to have that goal. Also, we already talked about whole foods, but also portion control is important and that's just to generally help maintain a healthy weight. Screenings are done by your primary care provider, typically on a semi-regular, if not annual, basis, depending on your age. We would recommend cholesterol and blood sugar screenings to make sure you don't have any high cholesterol or diabetes, and then maintaining a normal blood pressure. Your risks for heart health, including a decrease in function, would be if you had any anthracycline exposure in your chemotherapy. You may recall that typically as a red chemotherapy infusion. You can ask your oncologist if you have been exposed to that medication. Radiation to the chest is also a risk factor.
(10:19): [Dr. Patrick Johnston]: What about lung health after transplant? We know that you can develop inflammation of the lungs, which you may hear from your doctor is pneumonitis. The risk factors for this include chest radiation that involves the lungs, bleomycin exposure, higher doses of transplant chemotherapy such as carmustine (BCNU) and also if you're at a younger age when you undergo transplant.
(10:50): [Cecilia Merrigan]: Managing lung health risk factors. How can we work with those risk factors and help you thrive through that? It's important that we maintain our vaccinations throughout life. We would recommend the pneumococcal vaccine, influenza annually, COVID annually, or however often it will come out in the future. A newer vaccine this year for anyone greater than 60 years of age is respiratory syncytial virus (RSV). Imaging is going to be an individual decision and discussion between you and your primary care provider typically. That's going to take into account factors such as if you have used or currently use tobacco to determine if any imaging is warranted. And then obviously what helps your heart helps your lungs. So exercise will help with your lung health overall.
(11:49): [Dr. Patrick Johnston]: What about your bone health after transplant? We know that there are certain risks that affect your potential for developing osteoporosis or osteopenia. These include having a sedentary lifestyle, having early onset menopause and having certain rheumatologic conditions such as rheumatoid arthritis. We know having prolonged steroid use can damage bones. Being a female puts you at risk, as well as if you are a smoker either past or present.
(12:23): [Cecilia Merrigan]: How we can reduce the risk or the negative effects to bone health? Again, that exercise is coming up, but specifically resistance training. Using resistance bands, weights - things that help your muscles actually contract and maintain a contraction - help with that overall bone health as well. Calcium and vitamin D, just having a diet rich in that is what's currently recommended. Unless you've been identified with a true deficiency by one of your providers, there's no current recommendation on supplementation of that outside of a diet rich in those minerals. Finally, bone density scanning. The current recommendation for that would be to start at the age of 65 for women and at the age of 70 for men. You discuss this with your primary care provider as well.
(13:24): [Dr. Patrick Johnston]: What about your nerve health after transplant? What is your risk of developing nerve damage, whether transient or permanent? There are some risk factors. Certain chemotherapeutic agents such as vinca alkaloids which are derived from the vinca vine, the flowers that you might plant in the spring. Also, certain drugs that are used for multiple myeloma, but also myeloma itself can have amyloid deposits that cause some level of neuropathy.
(13:56): [Cecilia Merrigan]: This area of your health overall can be a challenge depending on the factors that brought you to this point with your nerve health and if you have any neuropathy symptoms. However, there are things that can be done.
(14:14): Certainly, if you have a multiple myeloma, getting good disease control and managing that will help decrease some of those symptoms. Medications. Some patients benefit from different types of medications, like gabapentin or pregabalin, and you can work with your primary care provider to help provide you some relief of the numbness or tingling that you may be experiencing.
(14:41): Physical therapy can help, depending on the cause of your peripheral neuropathy, and is something you could discuss with your primary care provider. Wearing loose fitting clothing also tends to help minimize the peripheral neuropathy symptoms you may have. In addition, compression stockings, kind of the opposite end of the spectrum, could be beneficial. It's really going to be something that you have to individualize and see what works best for you. Alternative options would be exploring acupuncture as a possible benefit for you, and warm foot baths.
(15:26): [Dr. Patrick Johnston]: What about your immune health after transplant? We know that there are certain risk factors that may result in decreased immunity. These include having had a prior splenectomy. If you've had prior CAR-T cell therapy, we know that that results in lowered immunity. As well, if you're a person of advanced age, your immunity drops as we age.
(15:54): [Cecilia Merrigan]: Supporting your immune health would be starting that revaccination process. There's just a little schematic here to see that. Essentially, you're going to get four rounds of immunizations starting at approximately six months, with the caveat being COVID and influenza immunizations, which will depend on the time of year. Things to bear in mind with vaccinations in general, moving forward in your life and as you get further away from transplant, is that you're still going to want to discuss with your oncologist or hematologist any live vaccine before getting it to make sure it's safe for you.
(16:38): [Dr. Patrick Johnston]: What about sexual health after transplant? We know there are certain factors that affect fertility or sexual function. These include certain chemotherapeutic agents, and whether you have anxiety or depression developing before, during or after your transplant. Also, there is decreased fertility as a function of age.
(17:03): [Cecilia Merrigan]: When we look at how we can assist with sexual functioning after transplant, we're going to be looking at three different areas of health. The first would be a sexual health specialist. There are two different types of providers. One could be a women's health specialist, or a urologist if you're a male, as well as sex therapists. Some medications can be beneficial, depending on the cause of your sexual dysfunction, if that's the worry there. Keep in mind erectile dysfunction medications that are available. If the issue is vaginal dryness, you can work with your primary care provider to access treatments for that.
(17:52): If it's anxiety or depression related, there are medications and therapies offered to help manage in that area. It's going to be really important that you be honest and upfront with your primary care providers about any concerns you may have with sexual function, to get to the root cause, so that an effective treatment can be started for you. And then, finally, hormone level. This is most important in women who become menopausal after their transplant. If you're going through menopause before the age of 50, it may be worth talking to a gynecologist about whether or no hormone replacement is helpful for you.
(18:45): [Dr. Patrick Johnston]: How can we thrive with regards to sexual health after transplant? You want to have planning before the transplant. Often there's a discussion of sperm banking or possible cryopreservation.
(19:06): After the transplant, we usually want patients to be disease free for two years before attempting to conceive. I always remark to my male patients, do not assume that a transplant is an effective means of birth control. If you're not trying to become pregnant, it's important to continue using birth control devices such as condoms. If you've had prior anthracycline, it may be important to consult with a cardiologist to see if more testing is warranted to make sure that you have the heart strength to go through this. Now when you do choose to attempt to conceive, you often will be referred to a fertility specialist. If natural methods are not working, consideration can be given for in-vitro fertilization.
(20:07): [Cecilia Merrigan]: Mental health concerns after transplant. Now switching topics somewhat, we're going to look at your overall mental health. Certainly going through a transplant is a very difficult process in a lot of ways. What I hear a lot from patients, and you may understand and have experienced this yourself, is that when you're going through the transplant you feel like you're in a tunnel and there's just the next appointment, next thing to do, and you don't necessarily fully grasp the situation that you're living through. So now that we're on the other side of the transplant, some patients then start to feel that anxiety, the fear of reoccurrence, depressive symptoms, or even post-trauma symptoms. Those can occur more often in transitions of care.
(21:02): Meaning that, after the transplant, when you're moving to a new phase, you're not seeing your oncology or hematology team quite as much. When you're fatigued and have lack of sleep or insomnia, that can certainly worsen our overall mental health. And then just based on the statistics, if you're male or younger or older, you're at higher risk for things like anxiety and depression after a transplant. If you had previous trauma, prior to going through the transplant, you are at higher risk as well.
(21:41): [Dr. Patrick Johnston]: How can we thrive to improve our mental health? Well, there is cognitive behavioral therapy which often utilizes a therapist. There are medications that can be used. We know there are anti-anxiety medications, anti-depression medications, etc. It's always important if you're a spiritual person to utilize the spiritual support you have available. Some patients actually find that journaling is important to show their experience, their journey. I personally like mindfulness as a technique for being, living in the moment. There are many different publications and online tutorials on mindfulness. As well, exercise is very important. We know that this improves mental health. As it is for your heart and lungs, it's also good for your mind.
(22:45): [Cecilia Merrigan]: If you are in a mental health crisis. If you feel like you have become in crisis with your mental health and you feel like you'd be better off not being alive, or you have those thoughts, know that there is immediate help out there. We just wanted to share this so you have it. First, please know that you're not alone. This is the actual number. You can call 988 and there will be someone available - like when calling 911 - to help you if you are in crisis like that. If you have symptoms of anxiety or depression that lasts for two or more weeks, the first step would be to reach out to your primary care provider, unless you're in that crisis call situation.
(23:36): [Dr. Patrick Johnston]: What about your cognitive function after transplant? We know that certain things will affect your memory or other cognitive activities. These risk factors include advanced age, and we know that there are also medication side effects that can affect your mind. If you're fatigued, you're definitely going to have more difficulty with cognitive function. Again, anxiety and depression often affect the ability for memories and other cognitive activities. If you have certain dietary deficiencies, certain vitamin or mineral deficiencies, this can definitely affect your ability to think.
(24:22): [Cecilia Merrigan]: Moving beyond the cognitive difficulties that may have occurred during transplant, we look at different kinds of cogs that we can control to help improve that functioning. Your primary care provider - and we've talked about your primary care provider a lot - they're kind of jack of all trades that can help with many different aspects of your overall health. They are an important part of your care team. Be upfront about any concerns you may have so they can look at the root cause to see if there are any other actionable items that can occur, like replacing some of your vitamin deficiencies if they are present.
(25:12): If you're having difficulty sleeping, working with someone within sleep medicine can be beneficial to help improve your quality of sleep, which will improve your cognitive function. Depending on the level of impairment, even occupational therapy or occupational health specialists can help with giving different strategies and improving that cognitive function over time in a more prescriptive way than can be done at home alone.
(25:51): [Dr. Patrick Johnston]: Caregiver resources post-transplant. Always remember the support you have around you. When you went through transplant, you often were required to have a caregiver at all times if you were in an outpatient transplant setting. But post-transplant, it's still important to have those caregiver resources. We know that anxiety and depression can occur in both you as well as caregivers. There's also the financial stress that occurs with a transplant. Remember though, you matter too. Both you and the caregiver are important. And as a matter of fact, whenever I see one of my post-transplant patients, I look at their caregiver and ask, "How are you?"
(26:38): There are risk factors that can affect things. Your employment status going through transplant may affect your ability to regain your prior employment. If you have prior mental health concerns, they can be exacerbated after going through transplant. If you have a lack of a support network, this greatly increases your risk factors, so it's important to have those caregiver resources present.
(27:13): [Cecilia Merrigan]: Caring for the support person. Like Dr. Johnston said, look at the interplay between both the support person or persons and the actual patient going through the transplant. The support person matters in the context of how they help support the patient through transplant. If they're not healthy and thriving, it's difficult to improve the quality of life and health of the person going through the transplant. So we want to look at the success of the whole unit, both you and your support person. Looking outside of the transplant for that support person is important so that they can regain a little bit of the control that they likely felt like they lost during the transplant time.
(28:07): Getting back involved in prior interests or work during this time, and looking at your lifestyle, are there things that can be tweaked similar to what we mentioned before? Can we add in a little exercise? Is there a moment for mindfulness throughout your day? Look at strategies that work for you and then consider if therapy would be helpful to help you process everything that you've gone through. And then for the support person in general, having some time alone just to be by themselves - not having to care for someone - can be really helpful in their overall success.
(28:53): [Dr. Patrick Johnston]: With regards to resources, there's a huge wealth of information out there, as well as financial support, that can be obtained both during and after transplant. These include the BMT InfoNet which is sponsoring this activity. There's the National Coalition for Cancer Survivorship. For those with lymphoma, the Lymphoma Research Foundation has huge resources. The National Center for Complementary and Integrative Medicine from the National Institutes of Health (NIH) is very useful for looking at what has been proven to be a benefit, as well as things that have been tested that really have no active benefit for patients in this post-transplant setting. We do have our Mayo Clinic website that has a lot of information. The Leukemia and Lymphoma Society is very helpful for patients with those disorders. The International Myeloma Foundation, the Multiple Myeloma Research Foundation and the nbmtkLINK, the National Bone Marrow Transplant Link. All of these have a wealth of information. You should utilize those resources if you need to.
(30:15): [Cecilia Merrigan]: These are just our references. We'll stop here. Thank you so much for your attention and allowing us to speak with you today. We're happy to answer any questions you may have.
(30:26): [Dr. Patrick Johnston]: And I'd like to thank BMT InfoNet for inviting us to speak, and I want to thank all of the patients and caregivers for their time and energy making it through transplant. Hopefully this will help you live many years very healthy after that event.
Question and Answer Session
(30:56): [Michala O’Brien]: Thank you Drs. Johnston and Merrigan for this excellent presentation. We'll now begin the Q&A session of this presentation. If you do have a question, please use the chat box on the lower left side of the screen to submit your question. We'll answer as many questions as possible. All right, let's get started.
Our first question is, “Does treatment accelerate ailments in the body? Does treatment have an effect on the body orthopedically?”
(31:30): [Dr. Patrick Johnston]: Sure. I guess I'll go first. This is Patrick again. So can treatment accelerate ailments in the body? Well, yeah, of course. Not just the fact of going through transplant, but also depending on the treatment you had prior to transplant. We know that chemotherapy or radiation therapy can affect your thyroid function. We know that in patients at the age of 65, normally about one in four have low thyroid function, but after transplant, quite frequently that comes on earlier. I actually check thyroid function testing yearly on patients after transplant in case they need that supplement.
(32:23): Can it affect your bones? Yes, of course. We talked about going through transplant, if your lungs get affected and you have pneumonitis and you get placed on a longer course of steroids to treat that. Well, steroids affect bone health and can accelerate that. Also, some of the diseases can affect bone health, including myeloma. So it's important. What do I stress? I'm really big on getting my patients to exercise. I remind them that weight-bearing exercise will improve your bone strength and health. Also, you need to work with your transplant physician, your primary hematology-oncology doctor and your primary care provider, to see if you're developing osteopenia or osteoporosis and what you can do to intervene on that. Hopefully this answered your question.
(33:10): [Michala O’Brien]: Okay. “Is breast cancer post-transplant a typical condition after three or more years after transplant?”
(33:22): [Cecilia Merrigan]: Thanks for the question. So this is a question that needs to take into context the exact treatment that went into not just transplant, but more typically radiation that was affecting any sort of breast tissue. I would say, typically, just looking at you as a whole person having had a type of cancer, you're genetically at slightly higher risk for other types of cancers, not just specifically breast cancer. But the general guideline, if you had no radiation, is still the same as far as mammography and breast examinations and following up with your family medicine provider, because the risk is generally the same as the general population. However, there is a caveat there in that if you had radiation, your risk for breast cancer increases, but it's typically around eight years after the radiation exposure. So three years would be quite a short interval. And if there are concerns, I would recommend following up with your provider on exactly the type of treatment you had, and ask if there are any specific treatments that would increase your risk specifically. I hope that answers the question.
(34:59): [Michala O’Brien]: Great. “If my immunity hasn't recovered in two to three years, can it still recover? I have low immunoglobulin G (IgG).”
(35:09): [Dr. Patrick Johnston]: Yeah, so that's actually a great question. The first thing I'm going to stress is that your immunity is not only related to antibodies - so reflected by your immunoglobulins like IgG - but also is composed of your T-cell immunity. What I stress to my own patients is I don't only focus on the number, the IgG level, but I also look at if they are having frequent infections. If they are, and especially if they're serious infections, then they may need supplementation with pooled immunoglobulins, often called intravenous immunoglobulin therapy (IVIG). Can your immune system recover beyond the three-year point? Sure. It may take a while. It may actually realize that when you get an infection you trigger an immune response. When you're being vaccinated, you're triggering an immune response. Now this being said, some of our patients will have had a transplant and CAR T-cell therapy, which uses the genetically modified cells to target tumor cells.
(36:27): Now we do know that when you undergo both of these, your immune system is going to be dented even more, and it may take several years for this to recover. There is still the potential for recovery. If we're not seeing recovery after a period of time, there are times where we would perform a bone marrow biopsy to make sure that there's no evidence of any underlying chromosomal damage that may be resulting in this. Or are there other conditions that are reducing your ability to manifest an immune response, such as... So I'm going to give an example. I'm a lymphoma specialist. With certain types of lymphoma, particularly mantle cell lymphoma, we will give a maintenance antibody therapy after the transplant and that will delay the ability to redevelop an immune response. So hopefully that answered your question, but yes, there is still the potential for regaining immunity.
(37:38): [Michala O’Brien]: This patient asks, “after having an autologous stem cell transplant, how often should I undergo or follow up with bone marrow biopsies, positron emission tomography (PET) scans and standard blood work?
(37:52): [Cecilia Merrigan]: Yeah, that's a very good question. Some of it will be specific to what drove the decision to move forward with an autologous stem cell transplant. There's no kind of generalized...as far as... I'll break this down to a bone marrow biopsy after transplant[SH1] . So again, we're lymphoma specialists. Just as an example, if there was no involvement in the bone marrow prior to the transplant for the lymphoma, we actually don't typically repeat the bone marrow biopsy unless there's another reason to do it like Dr. Johnston was just mentioning. Looking at lab work is also a little bit dependent on the disease that brought you to the point of needing a transplant. I would say, generally, once you're past that first year - we'll just say you've had count recovery - typically, we would recommend blood work every time you're going in for follow up as planned with your hematologist-oncologist. So that is about every four to six months at that point. Once you get to about five years post your transplant, then the recommendation for routine lab work is just annually. When you would go in for your general physical, seeing where your blood counts are at that time.
(39:11): Finally, the last part of that question was imaging. Again, that depends on the type of disorder or disease that brought you to the transplant. Generally speaking, it's a little bit up to debate and up to provider discretion, as well as discussions with you as the patient, on the routineness of imaging. Specifically for lymphoma, depending on the type of lymphoma, we tend to repeat imaging every six months for the first year and then annually thereafter. But if at two years you're doing well, then we tend to stop. But that could be different if the disease that led to your transplant was chronic lymphocytic leukemia (CLL) or something of that nature, where your disease wasn't manifesting within scans. That is a broad contextual answer. Generally speaking, several months between, if not annually, for scans, perhaps once for bone marrow depending, and then eventually getting to the annual lab work.
(40:47): [Michala O’Brien]: The next patient wants to know, “what are treatment options for somebody whose blood counts haven't recovered to a normal range post-transplant? What do you suggest?”
(41:01): [Dr. Patrick Johnston]: I think first you need to figure out what the underlying reason is for the lack of cellular recovery there. It's not infrequent to look for any comorbidities to see if somebody has, for example, developed kidney injury - remembering the kidneys produce the small protein that stimulates the bone marrow to make more red blood cells. That level may be low in the blood and we may need to supplement with erythropoietin. There are times where for some reason the white blood cell count is just not rising as it should, despite having a normal starting component in the bone marrow, and we have to give agents to stimulate that, such as Neupogen. There are other times where simply the platelets don't recover, and we need to again provide one of these agents that can help increase the platelet level. And I've seen patients where all three of these are required.
(42:10): Now if all three levels are remaining low, that may be due to some complication during the transplant that stunted the ability of the stem cells to go to their normal niche and start producing more cells. There are times where, if we have additional stem cells, we give a cellular boost. For instance, with patients with myeloma at Mayo Clinic, we often collect for two or three transplants, so there are enough cells to give a cellular boost. On the other hand, if we find out that there's a clonal problem with a stem cell such as cytogenetic abnormalities that are limiting the ability, then there are times we have to look at other treatments such as the other type of transplant utilizing somebody else's stem cells to repopulate the marrow.
(43:03): [Michala O’Brien]: Okay. “Can anything be prescribed for an energy uptick? I'm extremely fatigued and it affects our quality of life.”
(43:16): [Cecilia Merrigan]: Yeah, this is a common issue after transplant and one that isn't easily answered. I would say, I always harp on the idea of looking at the root cause of why the fatigue is there. Certainly it's most likely related to having gone through a transplant and still recovering from that entire process. But we make sure that we meet with our family medicine or primary care providers to discuss the fatigue, and really look into is there something else that's contributing to this such as an under-functioning thyroid, or you're not eating enough, or you're not able to sleep at night.
(44:10): As far as a prescription goes, if there was an issue that was contributing to it, we could prescribe whatever treatment would be appropriate for the underlying cause. Now to say that we've maybe excluded all of those things and truly it's fatigue from the transplant, there's nothing else actionable for us to help improve. Really, there's no specific treatment or prescription that can improve fatigue. It's going to be taking a look at your whole lifestyle. We're holistically treating you as a person. Getting that activity in is crucial to helping with fatigue.
(45:01): Multiple studies have looked at this problem and the only thing that we have found - well the thing that has been most successful I should say - has been maintaining activity while you're going through transplant, and then continuing to have exercise or activity of some kind that you find enjoyable after transplant, and then slowly increasing that in increments until the fatigue improves. Another thing to consider is, for females, if you have gone through menopause from either the transplant process or previous treatments, there may be a component of fatigue that is compounded by that. That's a point that you could discuss with a gynecologist to see if perhaps a little bit of hormone replacement therapy may be beneficial to that as well.
(46:07): [Dr. Patrick Johnston]: And just to add on to that, I think incorporating rest through the day can be important. I'm going to give you an extreme example. I have a patient who is turning 90 who had his transplant when he was around 75. They lived here in town. His wife continually will say he's very tired, but when I see him he's actually quite energetic. He incorporates rest during the day and that actually improves his activity level in bursts. As Cecilia said, incorporating some form of exercise, whether that be walking, general cycling, these things can actually improve your fatigue level. Incorporating rest and exercise may benefit you. Thanks.
(47:04): [Michala O’Brien]: “Is there any clinical data or research studies to suggest that it’s beneficial for myeloma patients to take calcium supplements to help with bone repair while disease is under control?”
(47:17): [Dr. Patrick Johnston]: I think it's important to discuss that with your myeloma doctor because we don't want to get into a scenario of hypercalcemia. They often will want to know what your current vitamin D levels are as well as calcium. You also realize that bone repair with osteoblasts does require calcium to reform the good bone, and so you do require some calcium, but you also don't want to overdo it.
(47:58): [Michala O’Brien]: Okay. Somebody asked, “since one's immune system is affected at stem cell transplant, does this include all the viruses contracted during one's life so that there's an increased risk for colds for years following a stem cell transplant?”
(48:16): [Cecilia Merrigan]: I think the question's getting at, how much of your antibody levels are actually maintained throughout the transplant process? We often think of newborns or babies within the first year of life. It's not uncommon for infants to get in the teens levels of colds from picking up all the viruses, because they have absolutely no, or very little, immunity when they're born. I would say that's not quite the same for adults or younger individuals that go through transplant, in that we don't totally wipe out all of your immunity. We take away a large majority of it I would say, and that's the reason that revaccinations are necessary so that we can help protect you. But again, looking at your overall immunity, it's not just your antibody levels that provide you protection. Dr. Johnston mentioned T-cells. Those are the cells in your body that run around your bloodstream and surveil for viruses and things. They actually attack and kill viruses on their own without the use of antibodies.
(49:41): That number and the functioning of those cells is still present, talking months to years after transplant. So I would say, in short, the answer is generally no. However, given the caveat that if you are experiencing multiple infections, it's good to have a more thorough evaluation of your immune system. Take a more granular look at what your antibody and T-cell levels are, and see if there is an actionable item, like what Dr. Johnston mentioned before with IVIG, where we can infuse antibodies into you to help bulk up your immune system, and help protect against viruses and these cold symptoms or illnesses.
(50:39): [Michala O’Brien]: “Is there a particular reason why a multiple myeloma patient can only have a maximum of two transplants?”
(50:50): [Dr. Patrick Johnston]: Well, there's not any data to say why two is the magic number. Realize that we're always trying to optimize the therapy for each disease type. As you may realize, there are several new lines of therapy that have evolved since the development of transplant for multiple myeloma. This includes the multiple CAR-T cell therapies that have been approved, as well as now several bispecific and bispecific T-cell engagers (biTEs) antibodies that are in clinical practice. Usually what the physician or transplant or cellular therapist is trying to do, is trying to utilize the tools we have to get the best result to provide the best and longest quality of life possible.
(51:51): [Michala O’Brien]: ”This person is having an issue with recurrent vomiting after a transplant in 2022. Could this be a side effect of an autologous transplant?”
(52:07): [Cecilia Merrigan]: I would need to know a little bit more to be able to say exactly for this patient. Broadly speaking, having had a transplant two years prior, the likelihood that the transplant is causing intractable nausea and vomiting at this point is generally low I think. That would be something that we would generally consider more commonly in the acute phase or right after the transplant, right after you've had that chemotherapy, as a side effect from that at the time. At this point it would be prudent to look at other causes. Certainly, the transplant process can be difficult. Specifically, the chemotherapy can be difficult on the gastrointestinal (GI) tract, but several years later I would've expected the GI tract to have healed from any potential disturbance that was caused by the chemotherapy as part of the transplant process. Looking at other potential causes and a discussion with your provider regarding your symptoms seems reasonable.
(53:34): [Michala O’Brien]: “Does the L-glutamine taken before the transplant help with GI issues? Is there a study that might suggest that this is true?”
(53:45): [Dr. Patrick Johnston]: I don't really know of any study that would suggest that L-glutamine would improve the GI health to prevent GI issues going through transplant. Now that being said, that's one reason to utilize the National Cancer Institute Complementary and Alternative Medicine website to see if any studies have been done on this, because different groups are always looking, ‘at will this supplement improve things?’ Currently, at the Mayo Clinic, we have a clinical trial in lymphoma patients examining whether or not magnesium supplementation, either topical or oral, may be a benefit to patients. It's only by doing these clinical trials that we will know. But I do not personally know of any trial that has shown L-glutamine to be a benefit.
(54:38): [Michala O’Brien]: “In your opinion, what's the likelihood and timing of secondary cancers after a stem cell transplant?”
(54:48): [Cecilia Merrigan]: Timing of secondary potential cancers and the actual overall risk is dependent on a few factors. These include your familial history of a secondary cancer, what type of treatment you got pre, during and post-transplant, your genetic profile, your lifestyle choices and any modifications you may have made to improve your lifestyle post-transplant. This isn't a situation of X number of years, this is your highest risk for getting a secondary malignancy. I would say, generally speaking, looking at the data that I've looked at, with different exposure risks, the eight-to-12-year mark is just to give you a general idea. It's not immediately after.
(56:01): Typically, if there's a secondary malignancy that's going to occur, it tends to be quite a few years after the transplant. It's not typically something that's immediate. That's why it's important to continue following with your primary care provider, in order to maintain those cancer screenings. It’s important to do this even if you ‘graduate’ from your hematologist or oncologist and you're not seeing them regularly any longer because you're cancer-free and you've recovered from transplant. That's going to be the biggest determinant in finding these things early if they are going to occur. The biggest point is to just maintain a nice healthy relationship with your primary care provider. These things could be caught early if they are going to occur.
(57:11): [Michala O’Brien]: Okay. It looks like we're running out of time, so we've got one more question to ask for this workshop. This person had an autologous transplant two years ago for an autoimmune disease, myasthenia gravis, and they have now relapsed and also developed Graves’ disease. They want to know how they can improve their immune system functioning to try to avoid further autoimmune dysfunction.
(57:40): [Dr. Patrick Johnston]: That is a rather complex question. I'm really sorry that the autoimmune condition has returned. We do know that with transplant, part of what we're doing is resetting the immune system, the innate immune system. Unfortunately, we can develop both good immunity as well as bad problems, such as where you develop other autoimmune conditions. I really think working with your - I'm assuming you're working with a rheumatologist - as well as their discussion with the transplant group as to what can be done to try and improve your immune health. So I'm sorry if that doesn't-
(58:32): [Cecilia Merrigan]: ... perhaps maybe an immunologist, since it's myasthenia, or an endocrinologist, depending on the overall picture if someone else is having a similar issue.
(58:51): [Michala O’Brien]: On behalf of BMT InfoNet and our partners, I'd like to thank Dr. Johnston and Dr. Merrigan for a very helpful presentation. And thank you the audience for your excellent questions. Please contact BMT InfoNet if we can help you in any way and enjoy the rest of the symposium.
[SH1]I didn’t know if I should cut the incomplete sentences?
