Presenter: Catherine Lee MD, Utah Blood and Marrow Transplant Program, Huntsman Cancer Institute, University of Utah
43 minute presentation, followed by 15 minutes of Q&A
Improvements in bone marrow, stem cell and cord blood transplantation (hematopoietic cell transplantation) have translated into more survivors living long lives. It is important for survivors to know their long-term health risks so that they can get appropriate screenings and care to prevent and treat major health issues long-term.
- By 2030, the number of bone marrow, stem cell and cord blood transplant survivors in the U.S. is projected to be nearly half a million
- In one large retrospective study, approximately 66% of stem cell transplant survivors had at least one chronic health problem after transplant, compared to 40% of their healthy siblings
- It can take 12 months or more to fully recover from a bone marrow, stem cell or cord blood transplant
Key Points with time stamps:
11:04 Who's at risk factors of developing late health issues after transplant
14:34 Heart disease after a stem cell transplant
17:20 Lung complications after a stem cell transplant
19:17 Liver and kidney problems after a stem cell transplant
23:34 Effect of chronic graft-versus-host disease (GVHD) effect on the genitals
24:58 Low thyroid function (hypothyroidism), sex hormones and infertility after transplant
33:11 Oral (mouth) complications after transplant
33:58 Secondary cancers are the leading cause of late deaths after a stem cell transplant
35:37 Cancer screening guidelines for survivors of a bone marrow, stem cell or cord blood transplant:
41:59 Vaccinations needed after a bone marrow, stem cell or cord blood transplant
Transcript of Presentation
00:01 Overview of presentation: Today we will discuss how to strive to thrive after your allogeneic transplant and, specifically, how to protect your health. I will be focusing on topics that help empower you, to give you knowledge, particularly on the medical side of survivorship, so that you have this knowledge to bring to your own physician to make them aware of things that you feel are very important to you.
Just to give an agenda for today's talk: we will be talking about the survivor, which are all of you. Then we will be moving on to the good and the bad, although I should describe this as more of the challenges that come after having an allogeneic transplant. Obviously the great benefit of transplant is being cured for the original hematologic disorder that you were transplanted for, and some of the challenges that arise after transplant are the late effects, which I will discuss in GVHD, on which there are several workshops on this topic tomorrow.
Then, thirdly, we will go specifically into what late effects you need to be aware of: what they are, what the risk factors are, how to prevent them and then how to treat them.
Then, lastly, we will talk about how to thrive after an allogeneic transplant: what resources are there what is survivorship care, what are the essential elements of having optimal survivorship care?
01:44 Definition of a bone marrow, stem cell or cord blood transplant survivor: Who is the survivor? According to the American Cancer Society, a survivor is anyone who has been diagnosed with a blood cancer or a blood disorder, and living from the time of their diagnosis through the balance of their life. A BMT survivor, which are all of you, is also the individual who has lived through the diagnosis of cancer or their blood disease, through their early BMT experience and, then, through the late experiences occurring months to years after their transplant.
More recently, these professional societies have expanded the definition of a cancer survivor or a BMT survivor to include the caregivers and family members who have supported the patient through their survivorship experience, because, as we all know, caregivers and family members play an important role in the recovery of the transplant survivor.
02:51 The number of bone marrow, stem cell and cord blood transplant survivors is growing: The transplant survivors are gathering force. The number of transplant survivors continues to increase yearly. In 2013, in the United States, we performed more than 20,000 allogeneic transplants, or donor transplants is what you might hear me call it from here on, per year starting in 2013. We had about 110 BMT survivors in the United States in 2009. This is including both autologous and donor transplant survivors. As you can see, over the years the number of survivors has been increasing, and it is projected that in 2030 we will have about half a million survivors, both autologous and donor transplant survivors, who are living and thriving.
When we look closely at the transplant survivors and differentiate between those who receive an autologous or your own cells versus those received a donor transplant, we see that, again, the trend shows that the number of allogeneic transplant survivors is also increasing over time, and that, by 2030, we will have at least 125,000 who received a related donor transplant and about 110,000 survivors who received a unrelated allogeneic transplant. Again, these numbers are very promising.
04:27 Outcomes from bone marrow, stem cell and cord blood transplants are improving: One of the reasons [for this increase] is because our early outcomes are improving. As you can see here, according to the data that we have from the National Marrow Donor Program®, between 1996 to 2001, only 42% of patients who underwent a donor transplant survived the first year; but over time, almost 65% of patients are surviving in the first year of transplant.
Again, long term survival after allogeneic transplant was found to be excellent in this one study, that was done by the Center for International Blood and Marrow Transplant Research, where they looked at over 10,000 patients who received a donor transplant and who survived more than two years with no disease. What they found was that for those who had no relapse of their disease in the first two years after transplant, the 10-year probability of survival—and in this case almost all of the patients had some type of blood cancer—but the 10-year probability of survival was about 85%. For patients without disease two years or more after transplant, only 10% had their original disease come back. These outcomes are very promising.
The reason why is that we are getting much better at transplant. We have better supportive care. We are recognizing infections much faster. We are providing better antibiotics and other antimicrobial treatments. Our conditioning regimens, if you remember that is the type of chemotherapy that you get right before your infusion of the stem cells, our conditioning regimens are better tolerated, particularly those for older patients. We have better management for GVHD, better prevention strategies as well as treatments for those who develop GVHD.
Then, as you have heard, we are making rapid advances in the long-term management after transplant. We are recognizing what the complications are; we are learning how to screen for them earlier and we are intervening in educating our patients. Our patients are living longer due to all of these advances.
With the care comes the price of survival, and as some of you may have experienced, sometimes the treatment of transplant can cause some impact on the patient's physical and medical well-being, psychological well-being, social well-being and existential well-being.
07:34: Study found approximately 66% of BMT survivors had at least one chronic health problem after an allogeneic transplant, compared to 40% of their healthy siblings: Some of the challenges of allogeneic transplantation were discovered through research. Doctor Burns also presented this data, but in a large prospective study that was done out of the University of Minnesota and the City of Hope, we found that 66% of BMT survivors—these are survivors who had an autologous or a donor transplant—reported at least one chronic medical condition compared to their healthy siblings who also undertook this survey. Only 40% of healthy siblings developed a chronic condition, but approximately 66% of BMT survivors had one chronic condition.
About 80% of survivors had a non-malignant late effect, so not a secondary cancer but some other type of late effect from the transplant, about five years after their transplant. What was remarkable was that the life expectancy among those survivors who survived five years after transplant remained 30% lower compared to the healthy general population. There are still areas that needs to be improved. As the relapse risk is reduced over time, particularly after the two years following transplant, then what becomes more problematic are the morbidities that occur due to the therapy.
09:02 Late effects that can occur after a bone marrow, stem cell or cord blood transplant: This illustration, it might be very difficult to see all the small print, is just to really show you the late effects that can occur in the different organs of our body.
If we go from top to bottom, many patients report having some type of cognitive effect after their transplant: and it can include depression, anxiety, post-traumatic stress disorder or memory issues, processing speed issues, functional issues. That is an example of side effects on cognition.
We also know that the lung can be affected several years after your transplant, and include some diagnoses such as bronchiolitis obliterans, which I am going to go into these in further detail, but I just wanted to point out that many organs can be affected from the transplant related therapy and the infections and GVHD. It seems overwhelming. I will say that majority of patients do not have all of these together, but at least one of those organs will be affected after transplant.
Some of the consequences of the late medical effects of transplant can also, consequently downstream, affect other nonmedical late effects such as cognitive issues which can then impact finances, family relationships, other social relationships. It can impact employment. We know that the late effects of transplant are not just medical but can also affect other domains of our life.
11:04 Risk factors for developing late effects after an allogeneic bone marrow, stem cell or cord blood transplant: Some patients ask, "Why did I have this late effect? What made me prone to getting it?"
Really, what is essential to understand is that some of the risk factors of having a late effect are related to comorbidities, or to the underlying disorder for which the transplant was done. Patients who had a diagnosis of diabetes starting at age 10, or who had some thyroid disease or had high blood pressure, high cholesterol prior to transplant, those, what we call comorbidities or pre-transplant exposures, can be carried through transplant and, also, impact the chronic condition after transplant.
We know that the primary therapy for the blood disorder, such as chemotherapy, irradiation can also affect and contribute to the long-term effects after transplantation. The conditioning regimen, which again, usually includes chemotherapy and radiation, also synergizes with the earlier treatment. As well, any complications after transplant in the first 100 days or afterwards, such as GVHD, infections, other exposures such as immune suppression, steroids, other medications can also contribute and are risk factors for late complications. Understanding all of these risk factors will allow you to know which late complications you need to be aware of.
Really, the point of showing this is, in addition to the conditioning regimen, your inherent genetic risk and other infections or immune dysfunction that occurs after transplant, for those who have chronic GVHD, chronic GVHD is another well-known risk factor for many of the late effects of transplant. Because what happens in chronic GVHD, which you will hear about in the other workshops, is that this is essentially an immune dysfunction, dysregulation that is going on in the body, where the donor cells are recognizing your own healthy tissue cells as foreign and trying to eradicate them as they eradicate the cancer cell. In order to control that reaction, the transplant doctors need to give medication to help suppress that inflammation. What happens is that many of the immune dysfunction and the medications that we use to treat this can have long term effects on some of our organs.
Now we are going to go right into the specific medical effects, and this is probably where this is of most interest to you.
Having this knowledge will allow you to go to your doctor, your transplant doctor or your primary care doctor and say ‘Hey, I learned this. What are we doing to screen me to see whether I have this problem? How are we going to treat his? How are we going to prevent this?’
We will go over some of the most significant medical late effects so you have that knowledge.
14:34 Heart disease is one of the main late effects of a bone marrow, stem cell or cord blood transplant: Heart disease is one of the main complications or late effects of transplant, and it accounts for about 2 to 11% of deaths among BMT survivors. Heart disease is about three times higher than in the general population.
One of the cardiovascular diseases is coronary artery disease. Having baseline risk includes having high cholesterol levels or diabetes, so it is very important for all of our patients who end up going to transplant, to educate them beforehand to start thinking about lifestyle modifications— exercise, proper diet. These recommendations carry on through transplant and after transplant because doing these changes can improve the duration, the longevity of your life.
Some of the transplant related risk factors for coronary artery disease are the chemotherapy that you received, having any type of irradiation to the chest, and having chronic GVHD. Again, ways that we can prevent this from developing are paying attention to lifestyle, eating a healthy diet— low processed foods, eating a lot of vegetables, fruits, foods that have high antioxidants— promoting healthy weight and exercise. All of us should be getting about 30 minutes of at least walking five times a week. These things can help prevent having coronary artery disease.
The next other main late effect that affects the heart is something called cardiomyopathy and congestive heart failure. This is where some of the treatments, some chemotherapy and some of the irradiation treatments, can cause damage to the heart cells and, over time, the heart may not have the same ability to pump blood very efficiently through the body as well. Again, this is something where we do not typically screen for congestive heart failure, cardiomyopathy but if you start noticing signs of having shortness of breath or you start noticing fluid accumulating in your lower extremities, this is something that should be brought to your doctor's attention, and then they will assess you for this. Then the way it is treated is through specialized heart medications.
17:20 Lung complications that can occur after a bone marrow, stem cell or cord blood transplant—bronchiolitis obliterans and recurring infections: The next late effect that we will talk about is the lung. The first main late effect affecting the lung is something called bronchiolitis obliterans. When a patient develops this, it is essentially a manifestation of chronic GVHD of the lung. Usually patients who develop this will complain of shortness of breath with activity, having a dry cough or having some wheezing. When that happens, your doctor should order you some pulmonary function tests; they should get a CT scan of your chest and possibly do a procedure called a bronchoscopy, where they do local anesthesia or conscious sedation, and they will do a procedure where they put a camera into your airways and take a look, and then take a biopsy to see if there is any evidence of this chronic GVHD.
If a diagnosis is made, then your doctor should be doing routine pulmonary function testing. Treatment will start, but then your doctor needs to do routine pulmonary function testing every three to six months to see if the treatments that you are receiving are helping. Treatment usually includes first line steroids. Then, as well, some doctors will add some other treatments including inhaled fluticasone, azithromycin which is a type of antibiotic and montelukast.
The other main issue that can happen with the lung are recurring infections. This can happen with active GVHD or for patients who are on any immune suppression. It can be bacterial, viral or fungal, and it may require some antimicrobials including antifungal medications, or some of you may have received intravenous immunoglobulin— IVIG— when your IGG immunoglobulin G level is low, lower than 400.
19:17 Main effects of transplant on the liver are graft-versus-host disease (GVHD), iron overload and hepatitis: The next organ that we will talk about is the liver and iron overload.
19:30: Graft-versus-host disease (GVHD) and the liver: The main consequence after transplant is chronic GVHD of the liver, and this may not necessarily be something that you can feel, but this is something that the doctors would notice on blood work— having abnormal liver enzyme tests—or some things that you may see change are, you may see a very dark urine color and that is because in chronic GVHD or GVHD of the liver, something called the bilirubin can go up because the liver is not functioning well. When that happens, the bilirubin gets excreted out into the urine and it can cause your urine to become very dark colored or cola colored. Routinely, your doctor should be able to notice any changes on blood work.
20:15: Hepatitis after a bone marrow, stem cell or cord blood transplant: The other late effect that we watch out for is infectious hepatitis, particularly for those who have ever been exposed to hepatitis B or C previously. We monitor for any recurrence of hepatitis B or C after transplant and we treat appropriately.
20:34 Iron overload after a bone marrow, stem cell or cord blood transplant: The other main complication that can affect the liver and other organ systems is having too much iron in your system. This is related to having a history of frequent red blood cell transfusions. When a patient receives a red blood cell transfusion, all of that iron is incorporated into our hemoglobin, into the red blood cells. [When your body] stores too much iron, the iron can start getting deposited into other organs such as the pancreas, the liver, the heart and the endocrine system, and can ultimately cause damage to these systems, to these organs. The way that, again, that we diagnose this is through laboratory, through blood work.
Your transplant doctor, or your local doctor, should be, on a yearly basis, checking your iron levels. They should be checking something called the ferritin or ferrin saturation level. If those are elevated, the next procedure to do would be to do an MRI on the liver or the heart, particularly if you’re having symptoms of heart dysfunction.
The best way to diagnose iron overload is to actually do a biopsy of the tissue; but an acceptable noninvasive method of diagnosing is doing an MRI of the heart or liver. If iron overload is confirmed, then we need to, basically, reduce the iron in the body and this may be through phlebotomy or blood withdrawal—monthly taking blood out of your body— or starting a type of pill or injection called an iron chelator, which will help bind the iron and make you excrete it.
22:27 A bone marrow, stem cell or cord blood transplant can affect the kidneys: The next organ we will talk about is the kidney and the genitourinary tract. Chronic kidney disease is something that is becoming much more studied these days. We know that radiation, some of the medications that we use for GVHD, chemotherapy and infections can cause damage to our kidney— the kidney tubules which are important for absorption and flushing out toxins from our body. The way that this would be diagnosed is, again, doing routine testing of the urine, looking for protein in the urine, checking kidney function on your blood work and ultimately, if necessary, doing a biopsy of the kidney.
Different types of treatments include control of high blood pressure, if the high blood pressure is what is causing the kidney damage, and being referred to a kidney specialist. If it is something from GVHD, then again, the appropriate treatment would be immunosuppression medications.
23:34 Chronic graft-versus-host disease (GVHD) can affect the genitals: Going to genitourinary complications, many of our patients—this is a complication that is usually under-diagnosed in both men and women—but we can often see genital GVHD, particularly in patients who have any other GVHD that is affecting the mucous membranes— the eyes or the mouth, the throat, the GI lining tract. What happens here is that there is inflammatory skin changes in the genital area, and it is associated with dryness and pain. If you are having those symptoms, you definitely want to talk to your physician, who should then refer you to a gynecologist or a urologist for an exam. Additionally, all of our transplant survivors should be having yearly exams to monitor for any GVHD of the genital system. If it is present, then the treatment includes topical steroids, estrogen therapy for women, or sometimes mechanical interventions are needed [for women] if there is any vaginal constriction. Sometimes a gynecologist needs to use a tool called a dilator to help open up the entryway.
24:58 Bone marrow, stem cell and cord blood transplants can cause the low thyroid function (hypothyroidism): One of the systems that is affected quite often by transplant is the endocrine system and usually includes the thyroid as well as any gonadal issues, diabetes. Thyroid issues, and particularly hypothyroidism or low thyroid functioning, is prevalent in 20 to 40% of transplant survivors, and usually it occurs because that survivor received radiation or some kind of chemotherapy that can affect the thyroid gland. For those who do develop low thyroid function, usually those patients complain of feeling very tired, feeling cold, having very dry skin, weight gain or feeling very depressed. The proper workup when you tell the physician is for them to check your thyroid level, thyroid stimulating hormone and then free T-4 levels. If those are low, then the proper treatment would be to offer thyroid hormone replacement.
26:07 Diabetes is common after a bone marrow, stem cell or cord blood transplant: Diabetes, again, is very common after transplant, up to 20%. Risk factors—having a prior history of diabetes is probably the biggest risk factor— but then being treated with steroids long term for GVHD can contribute to having steroid induced diabetes after transplant. Sometimes chemotherapy and radiation can also cause diabetes long term. Usually, patients do not have any symptoms, but over time, if the diabetes is not controlled and it gets worse, survivors may report feeling increasingly thirsty, having frequent urination, feeling very tired again or having some visual blurriness. If you have those symptoms, your doctor should check your sugar level, check your hemoglobin A1C. Ways to prevent this from happening, again, is controlling your diet, living a healthy lifestyle and if you have a diagnosis of diabetes, then your doctor will offer you insulin or oral medications.
27:16 Growth problems are common among survivors of a pediatric bone marrow, stem cell or cord blood transplant: For our pediatric population, growth problems are very prevalent. Irradiation, particularly to the brain, and some chemotherapy can contribute to growth restriction. Most pediatric transplanters and pediatricians will work with the child and their family to start growth hormone replacement. It does not really apply to the adult area but it is good to know, to have that knowledge.
27:47 Low sex hormones and infertility can occur after a bone marrow, stem cell or cord blood transplant: Other endocrine issues include low sex hormones, and infertility in both males and females. Risk factors for both include radiation, more so than chemotherapy. This is relevant for both males and females. Symptoms include low sex drive, having some type of dysfunction, fatigue, and low bone mass, particularly in women. For men, if you have these symptoms, your doctor should be checking your testosterone level and other sex hormones in the morning. If, on two different occasions, these hormones are low, the testosterone level, then you can talk about testosterone replacement therapy with your doctor, either a gel or testosterone patch or even sometimes injections.
For females, again, hormone replacement therapy would be the choice of treatment. You should be referred to a specialist, a gynecologic specialist or endocrinologist who is very familiar in this area. For younger women who are considering having a pregnancy after transplant, we actually recommend waiting for about two to five years after transplant before trying to become pregnant because it is in those first two years where the risk of the disease that you were transplant for is highest in coming back. We do talk to our young women about this prior to going into transplant.
29:23 Osteoporosis, osteopenia and avascular necrosis can affect bones and muscles after a bone marrow, stem cell or cord blood transplant: Moving on to bone and muscle. Osteoporosis, osteopenia and avascular necrosis are the main complications coming after transplant that affect the bone and muscle, and many of these complications are due to radiation, GVHD, inactivity and steroid exposure. Osteoporosis or osteopenia— which means bone loss— the main complication of this is an increased risk of fracture. All of our transplant patients should have a bone density [test] every six to 12 months. This is a different guideline than compared to the normal, healthy population. The current guidelines for a healthy woman is not to have to do any type of a bone survey or bone densitometry exam until 10 years after menopause; but in our transplant patients, you should have been having earlier bone densitometry bone scans, bone density scans and more frequent evaluation, particularly if you have had these exposures.
30:24 An annual bone density scan and check of vitamin D levels is recommended for bone marrow, stem cell and cord blood transplant survivors: We check a bone density scan at least once a year. We check vitamin D levels and we routinely and aggressively replace low vitamin D levels. We recommend calcium and vitamin D on a daily basis and we promote physical activity and we [prescribe] bisphosphonates if needed.
Bisphosphonates are a type of bone strengthening agent—and some of you probably have heard the commercials for Reclast® and Zometa®—so we will inject our patients who have evidence of osteoporosis, or who are at high risk of osteoporosis because they have been exposed tos teroids for a long time, we will give them an injection of Reclast®, which is good for one year. This is something that should definitely be discussed with your physician.
31:14 Avascular necrosis can occur in patients exposed to steroids after a bone marrow, stem cell or cord blood transplant: Avascular necrosis, again, is mainly due to long term exposure to steroids. It is caused by a loss of blood to the bone, causing the bone to collapse or die. Usually most patients will have—if it occurs, it will occur in the hips more so than in the knees, the ankles and the shoulders—and it can get infected. Usually the treatment is very conservative and we try to avoid surgery if we can.
31:39 Dry eyes and cataracts can occur after a bone marrow, stem cell or cord blood transplant: Moving on to the eye: dry eyes. I am sure all of you probably had a little bit of dry eyes after your transplant. The majority of the times, in the very early setting, it is due to the chemotherapy; but usually years out, months to years out after transplant, having very severe dry eyes is likely related to having chronic GVHD. If that occurs, then you need to talk to your doctor, who may then refer you back to your transplant doctor or to an ophthalmologist, and they will prescribe some topical steroids or lubricants, artificial tears. In very severe cases, especially with patients who have a lot of tearing because their ducts are over expressing tears to make up for the dry eyes, sometimes punctal plugs are necessary and, as well, for very dry eyes having scleral lenses which are specialized lenses that can hold moisture and can help with having very dry eyes. These are some of the therapies that could be discussed with your doctor.
Those who have been exposed to radiation and chronic GVHD are at risk for premature cataracts. Surgery is often used for that. In terms of prevention, your transplant doctor probably warned you that you should always use sun protection, sun glasses when you go out into the sun, and have an annual eye exam.
33:11 Chronic graft-versus-host disease (GVHD) in the mouth can cause blisters, ulcers and erosions after a bone marrow, stem cell or cord blood transplant: The mouth: again, usually associated with chronic GVHD in a long term time period, it can present with blisters, ulcers, erosions; and treatment usually includes steroid solutions, gels, lubricants, saliva substitutes. You should see a dentist every six to 12 months and have an oral exam and make sure there are no oral cancers that are developing because of your treatments.
Cavities are usually prevalent after transplant and are okay to be fixed, as long as you get permission from your transplant doctor and you are not on any type of immune suppression. Again, annual X-rays are very helpful.
33:58 Secondary cancers are the leading cause of late deaths after a bone marrow, stem cell or cord blood transplant: The next one is secondary cancers which are very important. It is actually probably the leading cause of late death long term after a transplant.
What we mean by secondary cancers is: not the cancer that you originally transplanted for, but a new cancer that arose because of the chemotherapy or radiation that you were exposed to. We are running a little bit out of time so I am going to talk about this because I think this is very important, and then I will move a little bit more quickly.
Some of the exposure that you had may give you risk to [develop] certain types of secondary cancers. Those who have chronic GVHD of the mouth or [skin] chronic GVHD, you need to be more vigilant about having any type of oral or skin cancer. This is where having an annual skin exam, annual dental exam is very important to monitor for these secondary cancers.
Anyone who had radiation to the chest, particularly women, needs to be concerned about breast cancer. Anyone who had a prior autologous —auto transplant or a self-transplant— before their allogeneic also needs to be alert for the possibility of having a different type of blood cancer down the road.
We are understanding more that human papilloma virus, which is a virus that typically is screened for in women on a pap smear exam, can lead to cervical cancer. Women should definitely have an annual gynecologic exam, a pap smear and be screened for any type of cervical cancer.
35:37 Important cancer screenings for survivors of a bone marrow, stem cell or cord blood transplant: These are the cancer screening recommendations for transplant survivors. At minimum, a transplant survivor should follow the same cancer screening recommendations as the general population. However, for some organs, like the breast, the recommendations are a little bit different.
I want to just point attention to the fact that for women who received prior radiation therapy or total body irradiation as part of their conditioning regimen, they should already start having an annual mammogram or annual breast MRI starting at age 25 or eight years after their radiation, whichever comes later. It is not whichever comes first, it is whichever comes later, and no later than age 40. All the other cancer screening recommendations are very similar to those for the general health population.
36:37 Cognitive effects – thinking and memory issues – following a bone marrow, stem cell or cord blood transplant: Lastly, the other late effects that we discussed previously are on the cognitive, the brain. You guys probably have heard of the word "chemobrain": it describes having short term memory loss, slow thinking, word finding difficulty, learning impairment, executive function; and it can be caused by immune dysfunction, inflammation, chemo, radiation, drug toxicity, infections. One of the studies that was done showed that the cognitive function declines very rapidly about 80 days after transplant; but could return to pre-transplant levels about one year after transplant, and may continue to improve one to five years after transplant. Having some type of cognitive rehab can help improve these symptoms.
37:25 Psychosocial issues for survivors of a bone marrow, stem cell or cord blood transplant — fatigue, sexual dysfunction, mental health: As we know, having any of these late medical effects can affect also the psychosocial. Many patients will complain of having fatigue, limited activity, some sexual dysfunction. Mental health can be compromised for a while. Anxiety, depression, stress, guilt, fear of disease recurrence can all contribute to mental health dysfunction. Family and caretakers are also affected by these. There are interventions for these. Some of the interventions that are available are relaxation guided imagery, breathing exercises, behavioral therapy, group sessions, acupuncture, massage therapy, meditation, relaxation, yoga, hypnosis. These are all avenues in managing the psychosocial late effects.
38:15 Financial toxicity of a bone marrow, stem cell or cord blood transplant: We also know that transplant can come with a financial toxicity down the road. Based on the data that we have, we know that transplant is a financial burden. Twenty-six percent of our transplant survivors will have a decrease of their household income by more than 50%. Twenty-five percent of our transplant survivors are withdrawing money from their retirement accounts. Nine percent are selling, mortgaging, or refinancing their home and 3% of our survivors have to apply for bankruptcy. The transplant community is aware of this and we are actively working with payers, insurers and other key stakeholders to help address these issues of financial toxicity.
39:00 Research to improve health outcomes for survivors of a bone marrow, stem cell or cord blood transplant: Moving on in that direction, your transplant doctors are invested in improving the post-transplant care. In 2016, a group of international experts came together to discuss some of the challenges, many of the challenges that exist for our patients. We all met in Washington DC in 2016 with the following objectives: to define the critical issues and barriers in the field, set the research priorities and create the framework for studying late effects. Actually, Doctor Burns was one of the leaders of this and she is, actually, really initiating a lot of research programs to delve into these issues more deeply. Six priority areas were identified: cardiovascular disease, second cancers, immune dysfunction, quality of life, research method and how can we improve the healthcare delivery; and there is going to be more to come in the near future.
39:59 It can take 12 months or more to fully recover from a bone marrow, stem cell or cord blood transplant: While all this research is going on, what I am here to do is basically to give you recommendations and points to take home, to help you strive to thrive after your transplant. One of the most important take-home points is understanding that recovery and quality of life, it takes a while. It is not an instantaneous change once you hit day 100. Most patients do not feel like their old selves anymore. It can take up to 12 months or more for you to achieve where you were before the cancer diagnosis or having a blood diagnosis and transplant occur.
For those who have chronic GVHD, chronic GVHD can result in long term impairment, but my advice is to not lose hope. There are a lot more treatments coming down for chronic GVHD, and, again, with the management of chronic GVHD, it is not just medications but it involves a lot of physical therapy, nutrition recommendations, counseling and other supportive services. For some survivors, we have to recognize that we have a new baseline and we have to find ways to adjust to that new baseline.
Again, supportive services available to help achieve that are, again, physical therapy, nutrition, counseling and palliative care. The most important thing is to take ownership of your health, be informed, ask your doctors questions about your post-transplant care, which I gave you some background information here. Know the treatments that you had and the risks that come with the treatment. Having a primary care [physician] being in touch with your transplant physician is very important. Prevention, lifestyle modifications are also very important. Know what long term surveillance you need.
41:59 Getting vaccinations after a bone marrow, stem cell or cord blood transplant is important: Vaccinations—and I am going to finish up in a minute—know that vaccinations are also very important. We start vaccinations around six months after transplant. We encourage a flu vaccine every year. Vaccinations are against polio, diphtheria, herpes, tetanus, hepatitis, pneumococcal pneumonia, measles, mumps and rubella are necessary. If you have active GVHD, you should not be exposed to any live vaccines. This is an example of our vaccination schedule that is in our survivorship care plan, at the Huntsman Cancer Institute.
Very small print but, there is another mechanism of having all of this information, and that is the free transplant guidelines that come out of the National Marrow Donor Program®—also highlighted in Doctor Burns' presentation. It comes in a print form, online form and a mobile app form. If you download it, the recommendations for six months and one-year follow-up guidelines are available. There is also chronic GVHD symptom checker. There are reminders that you can set for yourself, and so this is a very useful tool to have to help guide you through the post-transplant experience.
My last slide—we are almost there—we all recognize the investment that you have put into your transplant treatment, the resources, the time, the effort, the hope that you put in; so I am just here to tell you that all of the experts in the field are really working hard to continue making progress in this field so that we can improve the longevity and quality of life for all of you.
43:37 Question from audience about chelation versus therapeutic phlebotomy for ferritin overload:
Audience member: What is your feeling about chelation versus therapeutic phlebotomy for a ferritin overload?
Dr. Lee: It depends on the patient. In general most transplant doctors will prefer phlebotomy or blood withdrawal over chelation medication. Phlebotomy can only be done when the patient has high enough hematocrit. If the hematocrit is above 36%, then phlebotomy is recommended; and the way we do it is we take out about 250 to 300 milliliters, CCs of blood on a monthly basis until the ferritin comes down below 1,000. Some doctors use a different parameter to decide how much blood to take out, but that is the common standard practice.
The reason chelation therapy is usually second line is because the medication, itself, can have side effects to the gastrointestinal tract. It can also suppress the bone marrow, so the blood counts and the white blood counts and the platelets can drop; and so, it is usually an alternative if phlebotomy is not able to be used.
Audience member: This is all really good information, but from what I know, my girlfriend here, she has a hard time when she does go to a doctor and she is asking for some of these tests, because it is not just a normal procedure; and so they have a hard time accepting that she wants these tests. So, do you have any recommendations or guidelines that you could point to doctors so they understand that it is needed for transplant patients?
Dr. Lee: Is this doctor a transplant doctor who does not understand or a primary [care doctor]?
Audience member: No, just regular doctors.
Dr. Lee: This is one of the challenges in the field; and this is where having a survivorship care plan [helps]. Your transplant doctor would give all their recommendations, and have these hard documents to give to the primary care doctor. But in the meantime, if that has not been done, I would really recommend —are you still in touch with your transplant doctor?
Audience member: Yes.
Dr. Lee: I would recommend reaching out to your transplant doctor and describing to them what you just told me; because the transplant doctor is not out of the picture just because the patient has survived past one year and is living well. Your girlfriend's transplant doctor should be in touch with the primary care doctor to discuss the importance of having these tests done. That would be the best advice. It should not always be your girlfriend. The transplant doctor should be taking responsibility as well.
Audience member: I am just wondering about the long-term anemia. My hematocrit and globulin have been below normal for a good while; but I think my oncologist says that [this] is just the way it is going to be. I have not had to have transfusions or anything for a good while. Does your body actually learn to live or function, I should say, at those lower levels somewhat normally? They are still kind of low; but I feel like I function alright.
Dr. Lee: Over time our bodies will adjust to our new blood level, to put it into easy terms. That does not mean that it should not be investigated — why your blood cell counts are dropping. After transplant, having a normal blood count can happen; and it can happen after over a year. If it does not happen, other reasons should be excluded such as any vitamin deficiency; B-12, folate and iron deficiencies can contribute to having anemia. Any infections or inflammatory disorders can cause anemia. So, these things should be evaluated first. I would recommend that your doctor look into them.
48:21 Question about the safety of acupuncture for transplant survivors:
You make the suggestion of using acupuncture. And one of the things I asked my transplant doctor, I said ‘I would like to do acupuncture’, and he said, ‘I don't want them sticking needles in you’. I said to him, ‘What about when you take blood? You punch a needle in me once’. He says, ‘I just don't want 20 needless punched into you.’ Tell me about that.
Dr. Lee: How many years out of transplant are you?
Audience member: It will be three.
Dr. Lee: Three. Are you on any immune suppression or steroids?
Audience member: Currently, yes.
Dr. Lee: Currently, our practice at the Huntsman Cancer Institute is that if patients are not on any immune suppression or steroids, we allow acupuncture after one year. The only reason why we ask patients to wait on acupuncture is because if they are on immune suppression or steroids, if an infection is introduced, it can cause more problems and it can be difficult to treat; and we just do not like to have patients be exposed to that risk of infection. Once you are off immune suppression or steroids for three to six months, and if you have no active chronic GVHD, acupuncture seems reasonable.
49:40 Question from the audience about blood counts fluctuating:
Audience member: I am about almost a year out of transplant and my blood levels are still fluctuating some.
Dr. Lee: The blood counts?
Audience member: Yes. How long would you expect that to go?
Dr. Lee: Are all your counts going up and down?
Audience member: Yes, pretty much, they go up and down. I do not think the red cells have ever gotten up to normal level. White [blood cell levels] bounce around from—I just got out of a hospital with an infection and that is what they believe dropped it —but before that it was at a normal level.
Dr. Lee: Usually in my practice after transplant, I usually see patients with stable normal white blood cell counts. Platelets and red blood cell can take a while to get to a normal level, but by 18 months after allogeneic transplant. If my patient’s counts are fluctuating up and down, it is usually because either they have infection, or any stress on the bone marrow can cause the counts to fluctuate. Is it a significant difference that you are seeing in your blood counts or just very different?
Audience member: Slight but low.
Dr. Lee: Slight but low. Sometimes just the time of day that the blood is taken—and if you are taking it at different laboratories, the values can be different—but sometimes just even the time of day, if you are dehydrated or over hydrated, that can affect slight drops and increases in all of the blood counts — the platelets, white blood cells and red blood cells. That would be the main explanation. It sounds like your counts are not—we would only get concerned if your counts were progressively dropping, decreasing, and that would be concerning for any of the original blood disorders coming back.
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