Stem cell transplants are sometimes used as a treatment for people with myelofibrosis, a type of myeloproliferative neoplasm (MPN). Stem cell transplants for myelofibrosis replace the tissue in your bone marrow with a healthy dose of new stem cells from a donor. This is known as an allogeneic transplant. Donors can be a relative or an unrelated donor, if they’re deemed to be biologically compatible by a specialist.
To learn more about preparing for a stem cell transplant, myMPNteam talked with Dr. Gabriela Hobbs, a hematologist-oncologist at Massachusetts General Hospital. She specializes in MPNs and other blood cancers.
According to Dr. Hobbs, the best way to prepare for a stem cell transplant is by getting into the best possible shape beforehand. “The healthier you are going in, the better,” she said. “It helps to have more reserve to handle whatever the transplant may bring.” She suggested:
Watch Dr. Gabriela Hobbs explain how to prepare for a stem cell transplant.
You’ll need to undergo several medical tests to determine if your body needs and can handle a transplant. Testing may include:
Your doctor will also want to perform additional blood tests prior to a transplant to screen for infections, check the health of your liver and kidneys, and measure blood markers like red blood cells, white blood cells, hemoglobin, and platelet counts.
Before new stem cells are transplanted into your bone marrow, you’ll go through a conditioning process to destroy cancer cells and suppress your immune system. This process aims to prevent your body from rejecting the donor cells. Conditioning typically involves high-dose chemotherapy, but it may also include radiation. Once conditioning is complete, you’ll be ready for the transplant.
Undergoing a stem cell transplant is a big deal. It’s normal to have mixed feelings as you plan for the procedure.
Members of myMPNteam have shared their thoughts before a stem cell transplant. “My stem cell transplant will be in November, maybe the second week. I’m really scared — nervous but excited,” one member said. “The rejection rate is high, about 7 to 8 out of 10, but my donor is under 30 years old, so hopefully, it will all be good. So, for the next one-and-a-half years, it will be a struggle but well worth it if it cures my primary myelofibrosis.”
Ask your doctor for a referral to a therapist or social worker to help you deal with the emotional aspects of getting a stem cell transplant. You may be able to participate in online or in-person support groups to discuss any anxieties related to the procedure.
Asking questions about the procedure itself can help to ease concerns or fears about the procedure. Knowing that a stem cell transplant isn’t a major surgery, for example, can help quell some fears and set more realistic expectations for what you will experience.
“I think sometimes people really are worried about that — that they’re going to have a big operation,” Dr. Hobbs said. “It’s important to know that neither the donor nor the patient have to undergo surgery in order to have a [stem cell] transplant. I think it is really important to know the transplant itself is given like a blood transfusion through a vein.”
If you’re nervous about how the procedure will unfold, ask your doctor to walk you through what to expect step by step. This way, you can avoid worrying about the unknown.
As your body recovers from the transplant, your immune system will be suppressed — putting you at high risk of infection. One of the most important things you’ll need to do after returning home from a stem cell transplant is avoid getting sick. In addition to taking precautions to avoid catching an illness from another person, you will also need to keep your home very clean to avoid getting sick.
Start by doing a deep clean before your transplant. Focus on the areas of your home where you intend to spend the most time recuperating. Your pretransplant home cleaning should include:
After your transplant, schedule a weekly cleaning service, or arrange for a friend or family member to take care of this essential task. You should not clean while you’re recovering to avoid exposure to bacteria or fungi that could make you sick. You should plan to stay out of freshly cleaned rooms for 30 minutes to allow dust or particles to settle.
You may need to limit the care you provide to any pets after your transplant. It may not be appropriate for you to feed or clean up after dogs and cats, or to allow your pet to lick your face or sleep in your bed.
Talk to your doctor about limitations around pets so you can make appropriate arrangements for pet care.
You can expect to spend at least three to four weeks in the hospital after your stem cell transplant. Before your transplant, talk with your doctor about what to expect while you’re in the hospital. You may want to ask about the visitor policy and what monitoring or rehabilitation you’ll experience while in the hospital.
Your doctor may provide you with a detailed list of what to bring to the hospital. Clothing may need to be laundered in a specific way. Items like blankets or pillows may need to be brand new and in their original packaging. There may be specific rules for the food that you can bring with you. There also may be specific guidelines for what toiletries you can bring.
In addition to following the specific guidelines your doctor outlines, you will want to bring materials to keep you occupied during your stay, such as books, games, and electronic devices.
Having support in place is important for when you’re discharged from the hospital. “It’s sometimes hard to predict how people are going to feel or do after transplant,” Dr. Hobbs said, “but one thing that I would say is universal after transplant is, at least for the first three to six months, patients should not expect to feel normal.” Dr. Hobbs explained that there will be ups and downs with recovery: “Expect it not to be a linear or straightforward path.”
It’s recommended to have a caregiver for daily assistance during the first 100 days following your procedure. If you don’t have a family member or friend who is able to fill the role, ask your provider about how to hire a reputable caregiver.
You will still be monitored closely after you are discharged from the hospital. You may need to be seen daily or weekly after your discharge as an outpatient. Your doctor will let you know how frequently you need to undergo tests or receive treatments. “Patients should expect to need to be on a few different medications after transplant to prevent rejection,” Dr. Hobbs said.
Close monitoring is necessary to catch complications that may develop after your transplant. “Unfortunately, infections are a complication after transplant,” Dr. Hobbs said. “The other thing to be aware of after transplant is graft versus host disease, where the transplant itself can attack the patient.”
You can prepare for this care by arranging for transportation in advance and developing a plan to keep track of any medications you need to take. A family member or hired caregiver may need to get you to and from appointments or help organize medications.
Exercise may be appropriate after your transplant, depending on several factors, such as your blood test results. Talk with your doctor before your transplant so you know what types of physical activities are appropriate and what you may need to take into consideration before attempting any exercise. Ask your doctor about physical or occupational therapy before your procedure.
You’ll need to take a break from visitors after your transplant to reduce your exposure to germs. To maintain social contact after your transplant, you can set up an email chain, private blog, social media group, or video chat schedule to stay in touch from a distance and provide updates on your recovery.
Your doctor will advise you on how long you need to limit your social interactions and how you can protect yourself.
Use the time before your stem cell transplant to communicate with your health insurance carrier and complete any required paperwork. This will minimize the burden of unexpected medical bills or tedious forms during your recovery time. Arranging a budget for your recovery (including caregiving, grocery delivery, cleaning services, etc.) will help reduce stress and make it easier to keep track of your bills once you’re back home.
While several treatment options can help prolong or improve quality of life with MPNs, stem cell transplants are the only potential cure. The five-year survival rate following an allogeneic transplant for MPNs ranges greatly between 30 percent to 70 percent. Getting the procedure during earlier disease stages is one way to boost a favorable outcome.
Since every case is different, you’ll want to spend time talking with your doctor to find out what you should realistically expect from the procedure. Stem cell transplants are never a guarantee, but they represent an immense source of hope for eligible candidates.
Members of myMPNteam have shared the benefits and risks they anticipate from a stem cell transplant. “I was told it would actually cure my myelofibrosis,” said one member. “Now, I am assuming there will be future problems from the six days of radical chemo and possible rejection of the donor marrow. It could be a hit or miss but worth it in the long run.”
You can influence some of the risk factors associated with poor transplant outcomes, but not all of them.
One member of myMPNteam advised another to take survival percentages with a grain of salt:
“When I had uterine cancer, my doctors told me to remember that percentages never take into consideration the details about each individual. If you are otherwise in great health, you are already very likely ahead of the stem cell transplant population for this group. :-)”
On myMPNteam, you can connect with other people who are living with MPNs. More than 1,800 people come together on myMPNteam to ask questions, give advice, and share their stories with others who understand life with MPNs.
Are you considering a stem cell transplant? What are your questions or concerns? If you’ve already had a stem cell transplant, please share your story in the comments below, or start a conversation by posting on your Activities page.
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