Survivorship: Health Concerns After Allogenic Transplant
In allogeneic transplant, the goal is to replace your own bone marrow with that of your donor. In order to do this, you are given very high doses of chemotherapy and possibly total body radiation to wipe out your own bone marrow. Then the marrow or stem cells of a donor is used to create your new bone marrow. It also causes a useful immune response from the donor’s cells, known as the graft versus tumor effect. These two processes lead to different, but equally important, long-term effects.
Health Risks After Transplant
When chemotherapy is used to prepare your body for the donor’s cells, very high doses are used. Some chemotherapy medications can cause health problems months to years after you received them. The high doses used before your transplant can increase these health risks. If total body irradiation (TBI) was used for your transplant, there are specific health risks as a result, and these are discussed in another article. Chronic graft versus host disease (GVHD) can result in unique effects. You should talk with your transplant team about risks related to your specific case.
You will be followed closely by your transplant team for quite a while after transplant. This article is a review of the information they will likely provide for you. It highlights the health concerns to be aware of and ways to manage these risks.
The risk of infection is highest for most survivors in the first 3 months after transplant but remains high even 1-2 years later. It can take a long time for your immune system to recover, particularly if you have chronic GVHD. Talk with your transplant team about your immunity and any necessary precautions. Your transplant team will likely follow you closely while your immune system is compromised. Some general guidelines include:
- You should not visit other healthcare providers while you are immunocompromised without first talking with your transplant team. In particular, you should not see a dentist unless your team tells you to. Women should not have gynecologic exams while immunocompromised.
- Immunocompromised survivors may be given medications to prevent:
- Certain bacterial infections.
- Herpes Simplex Virus.
- Pneumocystis carinii pneumonia (PCP).
- Fungal infections.
- You may need antibiotics prior to dental work. Talk to your transplant team before any dental work.
- You will need to get a number of vaccinations, many that you had gotten as a child. It is important to get these vaccines on the schedule your transplant provider tells you to.
- Most patients should receive a flu shot every year.
Survivors of allogeneic transplant are more likely to develop heart (cardiovascular) disease than people who haven't had a transplant. This can happen at an earlier age than you would normally expect. The risks can include:
- Vascular problems, such as stroke, myocardial infarction (heart attack), blood clots, and peripheral artery disease.
- Hypertension (high blood pressure).
- Hypercholesterolemia (high cholesterol.
These risks are higher if you have chronic graft versus host disease (GVHD) or are taking long-term immunosuppressive medication. A healthy lifestyle is an important part of reducing your risk. This includes:
- Get regular exercise.
- Maintain a healthy weight.
- Eat a healthy diet.
- Don't use tobacco products.
- Your healthcare provider should check your blood pressure, cholesterol, and triglyceride levels periodically.
Pulmonary (lung) late effects in transplant survivors can include bronchiolitis obliterans syndrome (BOS), fibrosis (scarring), pneumonia, and infections. To help keep your lungs healthy, you should:
- Report any new or worsening cough, shortness of breath, or changes in your breathing to your transplant team.
- Avoid all smoking, including secondhand smoke.
- Pulmonary function testing (PFT) can show chronic GVHD of the lungs long before any symptoms develop. For this reason, it is recommended that you have pulmonary function testing 3-6 months after your transplant or at diagnosis of chronic GVHD of any organ system.
- After total body irradiation (TBI), some survivors develop pneumonitis, which is a chronic inflammation of the lungs. This is usually treated with low-dose steroids that need to be tapered slowly, over a period of months.
Oral & Dental Health
Oral and dental health is especially important for those who received TBI or have developed chronic GVHD. All transplant survivors should:
- Talk with your transplant team to see if you need antibiotics before dental work.
- Have good oral hygiene, including frequent tooth brushing, daily flossing, and regular use of a mouth rinse.
- Have dental exams, teeth cleaning, and assessment for oral cancers every 6 months.
- Let your dentist know about your health history.
- If you have chronic dry mouth, you may benefit from artificial saliva products or sucking on sugar-free sour candies. Chronic dry mouth can lead to dental problems, so be sure to discuss this symptom with your dentist if you develop it.
Endocrine late effects are those that affect specific hormone levels, including thyroid and sex hormones (which can affect sexuality, fertility, and bone health). Thyroid function tests should be performed every year in transplant recipients. Infertility occurs in almost all men and women after transplant. However, occasional pregnancies have occurred after transplant and therefore effective birth control is essential. If you want to have a baby, see a fertility specialist to evaluate your fertility.
Low levels of sex hormones often cause concerns for women, including inducing early menopause, decreased libido (sex drive), decreased vaginal lubrication (can be worse with GVHD), and an increased risk of osteoporosis. Women should have hormone functions checked with blood tests one year after transplant and then once a year for women not in menopause. These include estradiol, LH, and FSH levels. Women should have an annual gynecologic exam once the transplant team says it is ok. Men should have hormone function measured (testosterone, FSH, LH) if they have symptoms, including decreased libido (sex drive), erectile dysfunction, and osteoporosis.
Late effects to the eyes are more common if you have chronic GVHD or received TBI. These can include cataracts, Sjögren’s Syndrome (Sicca Syndrome) and damage to the retina. All survivors should have an eye exam 1 year after transplant and further exams based on symptoms or concerns. If you have GVHD, you may need to see an eye doctor more often. Any visual changes should be reported to the healthcare team and followed by an eye exam.
Osteoporosis, or bone loss, is a concern for both men and women who took corticosteroids, tacrolimus, cyclosporine, and/or received TBI. Bone health can also be affected by the high dose chemotherapy you got, or if you had early menopause. To keep your bones as healthy as you can, you should:
- Avoid smoking, caffeine, and excessive alcohol intake.
- Perform weight-bearing and strength training exercises 2-3 times per week.
- Have a calcium intake of 1000-1200mg per day plus Vitamin D 800iu to 1000iu per day (ideally from food sources, and supplements when your diet is not sufficient).
- You should be screened with a DEXA scan one year after transplant. Some patients who are at higher risk may be asked to have a DEXA scan prior to one year.
Muscle & Joint Health
Long term use of steroids and GVHD can cause inflammation of your muscles and joints, resulting in weakness and decreased range of motion in joints. Let your provider know if you develop any weakness of muscles or inability for joints to move in all directions. Difficulty standing from a sitting position is an indication of this muscle weakness. Cancer therapies can cause a condition called avascular necrosis, which is bone death due to a poor blood supply to the area. Symptoms can include pain in the affected bone or joint that occurs when bearing weight or even at rest.
Some medicines used during transplant have been found to raise your risk of getting skin cancer. To reduce this risk, you should practice good sun health by:
- Seeking out shade when possible.
- Using sunscreen with an SPF of 35 or higher every day.
- You should also use hats, sunglasses, and protective clothing to reduce the risk of skin cancer.
- You should have a dermatologist that you see every year for a skin check.
- If you notice any new or changing spots or lesions on your skin or a sore that does not heal, report them to your provider.
Kidney and Liver Health
TBI, some chemotherapies and immunosuppressive therapies may cause long-term damage to the kidneys. This can result in renal insufficiency (decreased kidney function) and hypertension (high blood pressure). This risk is higher in people with diabetes. Liver function can also be affected by treatments.
- Have your blood pressure checked at least once a year. Manage high blood pressure with medications.
- Your kidney and liver function should be checked periodically with blood and urine tests.
- If you have diabetes, you should have strict control of your blood sugar levels.
- If you had red blood cell transfusions, you may be monitored for high levels of iron.
Emotional Health and Practical Issues
A transplant can also have a big impact on emotional, spiritual, and practical well-being. Changes in income and employment status can cause financial concerns for you and your family. It is essential to maintain your health insurance after transplant. This can be difficult if you are unable to work. Transplant recipients can also be at risk for depression, anxiety, sleep disturbances, and post-traumatic stress. Talk to your providers if you are experiencing any distress.
Sexual health can be impacted by changes in hormone levels, causing intimate relationship challenges. You may also be dealing with changes in your relationships with friends and family. This is all normal and your team is there to support you. Continue to work with your transplant team and transplant social worker if you are experiencing insurance issues, financial distress, loss of interest in usual activities, relationship changes, sexual difficulties, or other practical challenges in your life after transplant.
During the first 100 days:
- During the first 100 days after an allogeneic transplant, you will be closely monitored and have frequent visits with your transplant team. Don’t hesitate to contact your transplant team with any concerns.
- During the time that you are immunocompromised, you should not see other healthcare providers, such as dentists and gynecologists, without first discussing this with your transplant team.
After the first 100 days:
- Practice a healthy lifestyle to decrease the risk of heart and lung problems, including getting regular exercise, maintaining a healthy weight, eating a healthy diet, and not smoking.
- Have an annual flu shot. Additional vaccines will be determined by your transplant team.
- Annual physical exam, including an assessment of your mental well-being and cognitive function. Women should have an annual gynecologic exam when the transplant team says it is ok.
- Annual blood work, including:
- Thyroid function (TSH), triglycerides, lipid (cholesterol) panel, fasting blood sugar, liver and kidney function.
- Hormone levels (Testosterone in men, Estradiol, LH, and FSH in females) at year 1, then as needed.
- CMV monitoring for 1 year after transplant.
- You should undergo PFTs 3-6 months post-transplant, at 1 year and/or a diagnosis of chronic GVHD of any organ system. Repeat every 3-6 months for all patients diagnosed with chronic GVHD.
- Annual eye exam, particularly if you had TBI or GVHD.
- Bone health:
- Osteoporosis prevention: Get 1000-1200mg of calcium a day, ideally from your diet. Take vitamin D 800-1000 IU/day, weight-bearing exercise.
- Dexa scan at 1 year after transplant, or sooner if indicated.
- Annual dental examination once recovered from the acute effects of transplant. You will likely need to take antibiotics to prevent infections before having your teeth cleaned.
- Report muscle weakness (for example, if you have trouble standing from a sitting position) and symptoms of avascular necrosis, including pain in joints or poor range of motion in the affected joint.
- Monitor for practical, emotional, and spiritual concerns after transplant.
- Ask your transplant social worker for ongoing guidance and support as well as resource referral.
- Report depression, anxiety, changes in sleep or eating habits, or loss of interest in usual activities to your transplant team.
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