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Some helpful information for you and your family

Having bone marrow or stem cell transplantation can be an extremely stressful situation for you and your family. Knowing what to expect and having a plan for your visit, procedure and follow up care can go a long ways toward reducing stress and ensure that your transplant will be a successful one.

Your first visit to the clinic

Your first visit will probably be because your primary physician suggested that a bone marrow or stem cell transplant might be a treatment option for you.

This visit is a good time to bring along a family member or trusted friend. No decisions need to be made at this meeting, but it’s always helpful to have someone else with you so you can compare notes later.

The initial consultation takes between two and four hours, during which time we will take a complete medical history, perform a physical exam and you will have an opportunity to meet with the transplant team. The purpose of this meeting is to:

  • Gather and evaluate your medical information
  • Investigate possible risk factors
  • Discuss diet and physical conditioning during the pre-op stage
  • Provide detailed information about your before and after care
  • Meet with the transplant team
  • Review all the treatment options

Please be sure to have your medical records sent to the Florida Hospital Cancer Institute in advance so that we can review your medical history and condition before the meeting. Additional tests may help us learn more about your situation.

Following are some of the things we will need for your first visit:

  • Prior medical history specifics
  • Physical and exam results
  • Operative reports
  • Appropriate pathology slides and reports
  • Radiation therapy reports
  • Radiology films and reports
  • X-ray scans
  • Laboratory reports
  • HLA lab reports
  • Chemotherapy records/flow sheets
  • Hospital records and discharge orders
  • Records from your physician's office

Once testing and evaluation is complete, our transplant team may make some initial recommendations about your treatment plan. Each carries certain benefits and risks that you and your medical team can review and discuss. Again, this is a fact-finding visit; you don’t need to make any decisions.

After this initial meeting you’ll have some time to think things over, do some additional research, ask questions and consider the various treatment options. In the meantime, our transplant team will conduct a preliminary assessment about your eligibility for a transplant and answer any remaining questions you have. Once you are considered a good candidate for a bone marrow or stem cell transplant, we’ll schedule you for more testing to assess your overall physical condition and the current state of your disease.

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Your role in a successful transplant

If you and your team decide that a bone marrow or stem cell transplant is the best treatment for you, then you will want to understand the responsibilities you have in the process to ensure that your transplant has every chance for success.

This includes considering the effect a transplant will have on your life after the procedure. You will need to live within an hour of the Florida Hospital Cancer Institute for the first 100 days after your transplant. You’ll need to visit an outpatient clinic at least twice a week, maybe more if additional fluids or blood products are required.

You want to plan on being on medications for months, maybe years. These medications can be very expensive so you will want to check with your insurer regarding coverage and meet with our financial coordinator and a social worker to discuss your personal finances and how you can meet the financial obligations for prescribed medications.

After you are discharged you will need to return from time to time for follow up visits to our clinic to monitor your progress.

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Things you’ll want to do before your transplant

  • Read your handbook.
  • Identify a caregiver.
  • Arrange transportation to and from the hospital.
  • Arrange housing (if you’re more than one hour from the hospital in Orlando).
  • Review and sign the consent form(s).
  • Have a dental exam and ask your dentist to complete a dental release form at least 14 days prior to beginning your transplant.
  • Check prescription coverage for post-transplant medications.
  • Make arrangements for pet care and household maintenance during your stay in the hospital.
  • Speak with your physician about fertility options.
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Preparations to make you more comfortable at the hospital

At the Florida Hospital Cancer Institute we want you to feel as comfortable and safe as possible during your treatment. If there is anything we can do to assist you during your hospitalization, please let us know. The following tips, however, should serve as a good starting point for you.

What to Pack: Please keep in mind that your stay in the hospital can be 14 to 30 days, even longer if your situation warrants. Here are some of the things you may want to bring, but they are not required.

  • Comfortable clothes and sleepwear. We recommend tops that button up the front to make it easier to access your central lines. Hospital gowns will be provided if you wish.
  • Slippers or shoes for walking around in the room or halls.
  • Pillows or blankets (new ones are preferred).
  • Crafts, leisure activities or projects you enjoy.
  • Laptops, tablets, smartphones and cell phones. The hospital has free wi-fi for patients and visitors.

BMT Rooms: Rooms are designed to reduce the risk of infection and keep you safe during your stay.

  • Each room includes a nightstand, small closet, television, small refrigerator, tray tables and private bath.
  • Fresh flowers are not permitted. Gifts are encouraged, as are cards and notes of encouragement; just no fresh flower arrangements.
  • Due to HEPA filter ventilation requirements, our room doors are kept closed at all times. Only two visitors should be in your room at any time.

Patients Expectations:

  • Do not disconnect IV lines, even for bathing. This helps reduce the risk of infection.
  • Get exercise whenever possible, such as walking around the unit three times a day (morning, noon and night).
  • Take daily showers.
  • Brush your teeth daily, rinse with saline after each meal and do your scheduled Caphsol rinses.

Nutritional Considerations: During your stay you may find it difficult to get the proper nutrition you need because of the neutropenic diet restrictions and reduced appetite caused by chemotherapy.

  • We encourage you to bring your favorite foods from home. But please check with your nurse before bringing them to ensure they don’t conflict with your dietary restrictions.
  • Your personal foods and beverages can be labeled and stored in the refrigerator or freezer in our kitchen.
  • If the food was prepared at home, it must be thoroughly cooked and delivered to you promptly.
  • There is a microwave, toaster and blender available for your use.
  • A dietitian is available during the week for any questions or problems that arise during your stay.

Unit Routines: The BMT unit has many routines in place to keep you safe during your stay with us.

  • Our nurses work 12-hour shifts, 7 a.m. to 7 p.m. and 7 p.m. to 7 a.m. We ask that you and family members stay in your room and that you limit visitors during shift changes, which occur between 6:45 and 7:15 a.m. and 6:45 and 7:15 p.m. This allows our staff to get patient updates and prepare for the shift without interruptions.
  • Your nurse will do a thorough physical exam and check your vital signs at least every four hours.
  • You will be weighed daily between 4 and 6 a.m.
  • Blood tests will be drawn between 3 and 5 a.m. daily. This allows your physician to review your test results prior to their daily visit.

All food and fluid consumption should be reported to nursing along with all output of urine, stool and vomit. This will help us gauge fluid retention, constipation and diarrhea, which can occur during your stay.

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Post Transplant

After your transplant you will undergo the hardest phase of the process – the waiting period. Everyone is different and you may experience, none, some or all of side effects, depending on your case. One of the most common side effects is fatigue. It can take a year or more for your bone marrow to return to normal and your immune system to be restored. That’s one of the reasons why it is so important to protect yourself from infections.

In addition to fatigue, here are some of the possible side effects you may experience:

Bleeding: Because your new marrow hasn’t had time to create enough platelets, you may find that it’s easier to incur a bruise or to have difficulty stopping any bleeding. It’s also not uncommon for your stool to contain blood from time to time.

If you have any of the following signs or symptoms of bleeding, report them immediately:

  • Excessive bleeding
  • Prolonged nose bleeding
  • Tarry, black and/or bloody stools
  • Bloody urine
  • Blood and/or “coffee ground” vomit
  • Prolonged vaginal bleeding
  • Bleeding gums
  • Excessive bruising

Infections: In the first three months following your transplant you’ll be more susceptible to infections, especially viral ones. You may also reactivate certain viruses already in your body, such as chicken pox or herpes simplex. Medications can help control some of these viral, bacterial and fungal infections and you may need to be immunized again for childhood diseases since your body’s immune system can’t remember that you had them already.

Hemorrhagic Cystitis: The lining of your bladder can become irritated and begin to bleed. As a result, you may notice that your urine is blood-tinged and you may even see clots. This can be frightening, but is rarely serious. However, you will want to let your care team know if this happens.

Neutropenia: You can expect to have lowered levels of white blood cells for two to three weeks and you will be placed on neutropenic precautions since you will have an increased risk of infections.

Anemia: Because your red cell count will be low initially, you may feel tired, weak and/or dizzy. If the count remains low, a blood transfusion may be required.

Thrombocytopenia: If your platelets are low you might notice signs of bleeding after your transplant and your doctor may place you on bleeding precautions. If your platelet count remains low, you may be given a platelet transfusion.

Pulmonary complications: Your lungs will be prone to infection, including pneumonia and interstitial pneumonitis for several months following your transplant.

Pain: Pain is often present following a bone marrow or stem cell transplant and is managed with medication.

Nausea and vomiting: This is most commonly associated with chemotherapy and/or radiation therapy.

Anorexia: You may experience a loss of appetite, usually because of the chemotherapy treatments required before your transplant. You may also experience decreased taste sensations, mouth sores and/or dry mouth.

Diarrhea:  This can be caused either by your transplant regimen or an infection. If it occurs, let your care team know about it so that medications can be prescribed to combat fluid loss.

Constipation: This is usually a side effect of poor intake, pain medications and/or decreased mobility. Let your nurse know if you are experiencing constipation as there are medications available.

Mucositis and Stomatitis: Chemotherapy and/or radiation can affect your digestive tract and the lining in your mouth, causing dryness, soreness and white patches. If you’re experiencing these side effects let your doctor or nurse know so they can be treated.

Skin changes: Dryness, discoloration and flaking are fairly normal side effects. Your skin will be very sensitive and you should try to avoid exposure to the sun after your transplant to prevent sunburn.

Non-engraftment/rejection: There is a small chance that the bone marrow or stem cells won’t grow after your transplant. If this occurs, your medical team will work with you to develop a new plan of action.

Graft-versus-host disease: If you are receiving the bone marrow or stem cells from a donor, you may experience this side effect where the bone marrow or stem cells recognize the body as a foreign place as it begins to grow. This is not unusual. Acute graft-versus-host disease usually develops within the first 100 days following a transplant.  Chronic graft-versus-host disease can develop three months to a year after transplant. Medications will be administered to reduce the chance of developing this disease.

Veno-occlusive disease: This complication involves your liver and is caused by the high doses of chemotherapy used during the transplant process. Your liver is unable to filter out all the byproducts of medications or food and if not monitored carefully, can cause a life threatening condition.

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Discharge and home care

When it is time to be discharged, you, your caregiver and BMT team will go over your care plan so that you can make a smooth transition from hospital to home.

Preparing your home will include the following:

  • Vacuuming all the carpets and dusting, including ceiling fan blades.
  • Bathrooms need to be cleaned using a bleach solution to disinfect and clean any mold from tiles.
  • AC and furnace filters need to be changed.

About a week before your discharge your nurse will begin intensive training on everything you need to know in order to stay healthy. You’ll want your primary caregiver to be present at these sessions so that everyone understands what needs to be done.

Clinic visits: After you are discharged we will need to monitor your progress carefully. You’ll be visiting the BMT Outpatient Clinic at least twice a week to be examined by your primary BMT physician. Re-admission may be necessary at times. Don’t be discouraged if this occurs. We want to pay close attention to your condition and sometimes this requires specific tests and technologies only available at our hospital. If you are experiencing nausea or vomiting, you may want to carry a wet washcloth and small plastic bucket with you in the car.

Driving: You should not operate motorized vehicles of any kind until your physician gives you specific permission to do so. Because your blood counts rise and drop frequently, you may experience dizziness or weakness from time to time. Your doctor will let you know when it is safe to drive again.

Hand washing: We can’t overstate the importance of regularly and thoroughly washing your hands. This includes you, your caregiver and all friends and family you have contact with. Wash your hands before eating or preparing food, before and after you use the bathroom and any time you touch a soiled object. Commercial soap products are fine as long as your hands are washed vigorously for at least 30 seconds. Paper towels should be used to dry hands. Hand sanitizers are not a replacement for hand washing but can be used to supplement your hand-washing regimen.

Personal hygiene: Good hygiene overall is essential during this period of time. You’ll want to shower daily or more often if necessary. Don’t worry about showering with a catheter in place. Keep the dressing dry by covering the line and dressing with a plastic baggie. If it gets wet, change the dressing immediately. Bathing in the tub is not recommended.

Change your clothes daily and engage in peri-rectal care to prevent infection and the skin from breaking down. Bacteria and fungi like to grow in your mouth so be sure that you brush your teeth with a soft toothbrush after meals and before bed and see your dentist every six months.

While a mask can reduce the chance of airborne bacteria and viruses, it won’t necessarily guard against all infections. You should, however, wear a mask when you visit the outpatient clinic or a physician’s office or when you are in large crowds like shopping malls and theaters (avoid them at peak hours altogether). If your mask gets wet, use a new one. They are readily available at any pharmacy or medical supply store. Your BMT physician will let you know when a mask is no longer needed.

Monitoring your temperature: You will need to check your temperature twice a day for the first month or so, however, you don’t want to do it right after eating or drinking as this may affect the accuracy of the thermometer reading. When you’re through taking your temperature, rinse the thermometer with soap and cold water and store it in a clean, dry package. If your temperature is over 100.5 you should call the Outpatient Clinic at (407) 303-2070 immediately. Someone is on call 24 hours a day.

Medications: Before your discharge your nurse will go over the prescriptions you will need to take at home and provide you with an education sheet for each. It is very important that you keep track of your medications and take them at the correct time and in the appropriate dosage. While taking prescriptions you don’t want to take any over-the-counter medications or herbal products, including vitamins, without getting approval from your BMT physician.

Exercise: Getting the proper amount of exercise is important to your recovery as it prevents the loss of muscle strength, endurance and bone density. Walking is an excellent form of exercise and you can do it inside or outside your home, weather permitting. If it is sunny remember to use sunscreen with at least SPF30 on any exposed skin and wear a hat.

Pets and plants: Before you return home, you should have your caregiver remove any plants. You don’t want to have any contact with indoor or outdoor plants as bacteria and fungi can be present on the plants and in the soil, increasing the risk of infection. Avoid gardening, mowing the lawn or similar activities until your doctor gives you the go ahead. Pets can also carry a variety of diseases that you shouldn’t be exposed to. If you do have a pet, avoid all contact with birds and reptiles and do not touch or clean up any droppings. Avoid kissing or hugging your animals and don’t let them sleep with you. Close contact with outdoor or farm animals should be avoided.

Exposure to infections: If you come into contact with anyone who has or may have chicken pox, shingles or measles, please contact us immediately, even if it’s only a brief exposure. We also need to know about any viral or bacterial outbreak in your community.

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Schedule an Appointment

Contact one of our Cancer Care Coordinators to schedule an appointment at FHCI. You can call a coordinator at (407) 303-1700 between 8 a.m. and 4 p.m. (Eastern Time) Monday through Friday. Or fill out our online assistance form and one of our coordinators will get back to you within one business day.

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