Etoposide and Carboplatin followed by Autologous Transplantation for Germ Cell Tumors
The purpose of this information sheet is to provide you with information regarding what you might experience during transplantation. The risks and side effects of transplant will be explained to you and you will have an opportunity to speak to the physician about any questions or concerns you may have after reading this information.
You will be given high doses of chemotherapy in preparation for your transplant. This chemotherapy is called your preparative regimen. Normal cells such as white blood cells that help fight infection, red blood cells that carry oxygen, and platelets that help clot your blood are destroyed. Stem cells will be collected from you and given to you after your Carboplatin and Etoposide. These cells will start to grow new red blood cells, white blood cells, and platelets. This is called autologous transplantation which means you are receiving your own stem cells for transplant.
WHAT DOES THE TRANSPLANTATION INVOLVE?
Pre transplant work up:
Before starting your treatment, you will undergo extensive testing that will tell us how well your organs are working and the status of your disease. These tests will look at your heart, lungs, liver, and kidneys. The work up will include blood and urine tests, x-rays, lung tests, and heart tests. Additional testing may be needed depending upon your results. A bone marrow aspirate and biopsy may be necessary to further assess your disease. If any concerns are discovered during the work up you will be informed and if you would like a copy of your results you may ask your physician or nurse coordinator.
Filgrastim (GCSF/ Neupogen) injections:
Four days prior to starting collection of your stem cells, you will begin injections underneath the skin of a medicine called Filgrastim (Granulocyte Colony Stimulating Factor/GCSF or Neupogen). This medicine will make the stem cells that we need for your transplant go out into you blood stream from your bone marrow. You are encouraged to give one injection in the morning and one injection in the evening but if it is more convenient, both injections may be administered at the same time. You or someone you know will be taught how to give the injections.
Apheresis Catheter:
You will have a apheresis catheter inserted into a large vein, usually under your collarbone on either the right or left side of your chest. The apheresis catheter will be placed under sterile conditions with a local anesthetic and possibly IV sedation. Talk to the physician placing the apheresis catheter about the kind of sedation you are going to receive for line placement. The apheresis catheter will be used to obtain blood for laboratory studies and administer chemotherapy or other medications during your transplant. You will have your apheresis catheter for the duration of the transplantation process unless you develop an infection or a clot that cannot be cleared by medication. If you already have an apheresis catheter in place but the doctors feel it may be inadequate for transplant, you may need to have a new apheresis catheter placed and possibly your old one taken out. Your apheresis catheter will probably be removed before you are discharged from the hospital.
Apheresis (Stem cell collection):
Your stem cells will be collected from your blood by a process called apheresis. Apheresis is a continuous process in which blood is pulled from one lumen of your catheter and circulated through a machine to collect stem cells for transplant. The part of the blood that is not needed is infused back to you through the other lumen of your catheter along with other fluids. This is an outpatient procedure lasting 4-6 hours that will be done daily until enough stem cells have been collected for 2 high dose chemotherapy cycles. It usually takes 1 to 2 days to collect the stem cells needed but in rare cases it can take up to 5 sessions. Each day, the stem cells collected will be frozen in a preservative called DMSO and stored until the day of your transplant. You will continue to take the Filgrastim injections until enough stem cells have been collected.
One person can sit with you during apheresis and if more than one person comes with you there is a small waiting area for them to wait. You will be able to watch TV, read, or sleep since you will be there for several hours. You may eat and drink as you normally would and if you need to go to the bathroom a bedside commode or urinal will be available. A physician will be accessible if you have any questions or problems during the procedure.
The process of high dose chemotherapy and transplant takes about 3-4 weeks depending upon how long your recovery period is. You will receive 2 chemotherapy drugs called Etoposide and Carboplatin. The Etoposide is given through your apheresis catheter over 2 hours and the Carboplatin is given over 15 minutes.
Stem cell re-infusion (transplant):
Your stem cell re-infusion day (transplant day) is called Day 0. Your frozen stem cells will be brought up to the unit in a portable freezer and thawed out at the bedside. The stem cells will be infused through the catheter in your vein by the Stem Cell Lab technicians while the transplant team monitors the infusion. A nurse will remain at the bedside with you throughout the entire infusion. You may be pre-medicated with medicines such as Lorazepam (Ativan) and Dexamethasone to help decrease your chance of reacting to the preservative the stem cells are stored in.
There is a possibility that your stem cells may have been contaminated by a bacteria or fungus. This may not be detected until after infusion of your stem cells. Although rare, you will be informed if this occurs and have an opportunity to talk to your physician. Appropriate treatment will be offered based on the results after talking to your physician.
After your transplant:
The days after your transplant are considered positive days which means D +1, D +2, and so on. You will receive Filgrastim (also called GCSF or Neupogen) injections after your transplant to help your blood counts recover. It will take about 10 days for your white blood cell count to start to recover once it has gone down to zero. The AGC (absolute granulocyte count) or ANC (absolute neutrophil count) is a specific part of the white blood cell count that we watch during your recovery from transplant. This number needs to be at a certain level before we would consider discharging you from the hospital.
During this time, you will be monitored for any problems that might arise or any side effects of the treatment that require intervention. You will have medicine scheduled to help protect you against severe nausea and vomiting, but this may not always be effective, so you will have additional medicine available to you that you take as needed. You will be given medications to help protect you against bacterial, viral, and fungal infections but you may still get a fever and need additional antibiotics given to you. You may also need blood or platelet transfusions until your blood cells start to return to normal.
During the transplantation process communication with the healthcare team is very important. You are encouraged to be an active participant in your care especially regarding symptom management. Side effects that you might experience during transplant are controlled more effectively if you let us know how you are doing. If the medications you are receiving are not controlling your symptoms, let your doctors or nurses know so they can try something else.
2nd Round of High dose chemotherapy:
If you respond to the first round of therapy appropriately and have not suffered organ damage, you will receive another round of therapy with high dose chemotherapy and autologous peripheral blood stem cell transplant. The second round of therapy will begin once your blood counts have returned and you have recovered from the side effects of the first cycle of chemotherapy.
Activity during transplantation:
During this time you will be kept in protective isolation to decrease the risk of infection. Visitation will be limited per the program guidelines but the nurses, physicians, and social workers will work closely with you and your family to help you maintain contact with your loved ones. The guidelines will be discussed during the transplant education class and will be available in your education folder.
You will be encouraged to remain as active as possible by walking in the halls or riding on an exercise bike. Maintaining an activity level that you are comfortable with will be important while you are going through transplantation. You will also be encouraged to exercise your lungs by doing an incentive spirometer or taking deep breaths.
Outpatient transplantation:
Depending on several factors, certain portions of your transplant may be done as an outpatient. This will be a decision made by your transplant team, your family, and you. If you are an outpatient, you will still be monitored closely by your physician in the clinic setting and will need to stay in close proximity to the hospital for daily visits. If any complications arise, you may need to be admitted into the hospital for closer observation.
Follow up:
After transplant, your disease will be followed by blood tests, x-rays, and possibly bone marrow aspirations and biopsies. The amount of follow up needed and the time frame for the testing will depend upon you disease status and physician discretion. If at anytime you have concerns that your disease may have returned, please feel free to call and talk to your transplant coordinator or physician. In the event that your disease returns, options will be discussed with you at that time.
Maintaining regular appointments with your eye doctor, dentist, and gynecologist will be important after transplant to monitor for problems. Other testing as age appropriate may be indicated at the suggestion of your physician depending upon your clinical situation.
RISKS OR SIDE EFFECTS YOU MIGHT EXPERIENCE DURING TRANSPLANT
Apheresis catheter placement: Risks of this procedure include bleeding, infection, and pain during placement, and very rarely pneumothorax (entrance of air into the lung sac, which causes difficulty breathing). You will have a chest x-ray after the catheter is placed to make sure it is in the right place and that no injury occurred during placement.
Filgrastim (Growth Colony Stimulating Factor/G CSF or Neupogen): The most common side effects of Filgrastim are muscle aches and bone pain. This is because your stem cells are going out into your blood stream from your bone marrow so the bones that house the bone marrow can start to ache. This will go away after we are done collecting your stem cells and you stop your Filgrastim. If you have a pre-existing inflammatory condition such as psoriasis or vasculitis, they can increase in severity. An enlarged spleen can occur in association with a low platelet count and hair thinning can occur with prolonged use. A skin rash or elevated liver function tests are rare.
Apheresis (stem cell collection): Risks of this procedure include bleeding, fever, allergic reactions, numbness and tingling around the mouth, muscle cramps, red blood cell damage, and mineral and water imbalance. Since there is a catheter in your body there is a small chance that air could be introduced into the veins, which could result in death. There is also a small risk that the peripheral blood stem cells will not grow, which could lead to death due to infection or bleeding. There will always be someone near you during apheresis and you will be seen by a Nurse Practitioner or Physician on a daily basis and they are available should you experience any problems.
Etoposide (VP-16) can cause hair loss, liver damage, injury to the lungs, and low blood pressure. Mouth sores called oral mucositis may develop during the time when your counts are low after transplant. These sores can be painful and may require the use of pain medication. You will have an anti-bacterial mouthwash to help keep your mouth clean and decrease the risk of infection. Although uncommon sometimes patients experience fever, chills, hives, and wheezing with the Etoposide infusion.
Carboplatin can cause loss of appetite (anorexia) that may make eating difficult for a short time. You may need to eat small, frequent meals or supplemental shakes until you start to feel better. The dieticians on the unit can answer any questions you might have about your nutritional status. Carboplatin may also cause kidney damage, hearing loss, and numbness in the hands and feet.
Stem cell re-infusion (transplant or Day 0): Risks during your stem cell re-infusion include fever, chills, nausea, vomiting, abdominal cramping, or diarrhea. You may experience chest tightness or wheezing during re-infusion that could require oxygen for a short time through a nasal cannula. There will be a garlic-like taste and odor after infusion of the stem cells that may persist for up to 24 hours. This is due to DMSO (dimethyl sulfoxide), which is used to preserve the stem cells until transplant. Another risk is a severe allergic reaction (anaphylaxis) that can lead to serious complications, such as difficulty breathing or irregular heart beats.
Infusion reactions: There are several infusions you could react to during transplantation including chemotherapy, stem cell re-infusion, blood products, or antibiotics. Although rare, it is important for you to let someone know immediately if you think you are reacting to an infusion. If you suddenly start to itch, become hot or flushed, notice redness on your body, experience shortness of breath or feel like your heart is racing let your nurse know. You may need your infusion slowed down or stopped or a medication to help decrease your reaction.
Infection: The chemotherapy you receive with transplant decreases your ability to fight infection, which puts you at risk for developing an infection that can be severe or even fatal. We will try to protect you against bacterial, viral, and fungal infections by giving you antibiotics during and after transplant but these medicines are not always successful. You may need stronger intravenous (IV) antibiotics if you develop an infection. You will also be given an anti-bacterial mouthwash to use four times a day instead of toothpaste, which will decrease the risk of developing an infection in your mouth. If you develop a fever it is very important that you contact the Adult Bone Marrow Transplant physician on call immediately.
Bleeding: The chemotherapy that you receive with transplant decreases the cells in your body that help clot your blood. Because of this, you will be at risk for bleeding that can be fatal. If you would notice blood in your urine, stool, or emesis you need to contact the Adult Bone Marrow Transplant Physician on call immediately.
Blood/platelet transfusions: During transplantation you will most likely require transfusions of packed red blood cells and/or platelets. There are risks associated with receiving blood products: fluid overload, serious allergic reactions, and infections such as hepatitis, cytomegalovirus, and HIV (which causes AIDS). The risk of acquiring an infection from blood products is rare and all blood products that you receive will be screened against a form of these viruses in order to reduce the risks of viral transmission to as great a degree as possible within the limits of currently available technology.
Sexual dysfunction: There are varying forms of sexual dysfunction you may experience post transplant. Side effects include erectile dysfunction, vaginal dryness and decreased sexual desire. If you are female, you could experience early menopause. There is also a strong possibility that you may not be able to become pregnant or father children post transplant because of the previous treatment you have received in addition to the high dose chemotherapy. If you are concerned about any of these issues, please speak to your physician.
Disease recurrence: We will monitor you for any signs of your disease coming back through blood work and/or bone marrow aspirate/biopsies. If you are concerned that your disease is coming back, please call the nurse practitioner or bone marrow transplant physician.
Secondary cancers: There is a rare possibility that you might develop a secondary cancer due to the chemotherapy you have received throughout your treatment. This risk is very small and we would still recommend transplantation for treatment of your disease.
ADVANCED DIRECTIVES
Although we expect you to do well during transplantation, there may be previously unforeseen risks or complications that might develop while you’re undergoing transplantation. The risk of you experiencing a fatal complication during transplantation is less than 5%.
Sometimes patients going through stem cell transplant become, for a time, unable to consent to or refuse medical treatments for themselves. It is important for the doctor to know who can speak on your behalf if you are unable to speak for yourself. You have the right to choose a trusted family member or friend as your Health Care Representative, the person who will tell the doctor your wishes if you cannot speak for yourself. Stem Cell Transplant patients are encouraged to complete the Health Care Representative form before beginning high dose chemotherapy.
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