After deciding that you will have a stem cell transplant, the process of getting ready for treatment can begin. While SFS-MDR is searching for your donor and organising collection of your new stem cells, you will have a number of medical checks to confirm that the transplant can go ahead.
As well as these checks, it can also be a good idea to spend some time preparing yourself both physically and mentally for any possible challenges ahead, so that you are better equipped to deal with them.
We have provided information here on some of the issues you may need to consider, and have highlighted organisations that can give you extra support.
We will also help you prepare for the time you will spend in protective isolation while your new immune system develops.
This will be a difficult time for your friends and family, too. We have additional support and advice for them in our parents, family and friends section.
In this section you will find more detailed information on preparing for a stem cell transplant.
The conditioning therapy and the transplant itself are big undertakings for your body. They will probably cause some short and long-term side effects that could be difficult to cope with. This means it’s important to check that you are otherwise in good health before treatment can go ahead.
You will have the chance to discuss all possible side effects with your consultant and transplant team before consenting to treatment. During these appointments, the following tests are likely to be performed:
Before, during and after your transplant you will need lots of medication and supportive therapies, as well as other treatments such as your chemotherapy. To make this as straightforward as possible, you will be fitted with a central venous catheter (sometimes called a Hickman line) shortly before your chemotherapy is due to start. This is a thin tube that goes through the skin near your collarbone and into the big vein that leads into your heart. Alternatively, you may have a peripherally inserted central catheter (PICC) line in your upper arm. Both lines enable the nurses and doctors to take blood samples, deliver treatments and the stem cells themselves without using a needle every time.
After your transplant your CVC can be at risk of causing infection, so it will be removed as soon as it’s no longer needed, but it’s usually in for a few months. Removing it is normally done at the outpatient clinic using a local anaesthetic – you may need a stitch or two to help the wound heal. Many people see its removal as a positive step in their recovery.
Worrying about the state of your teeth might not be high on your list of priorities right now, but it’s important to have a dental check-up.
If you know of any work that needs doing, it should be done before you start treatment because there will be a risk of infection once it begins. Your hospital team will usually organise this for you.
Nutrition and exercise are both key factors when preparing for your transplant. If you can maintain a healthy lifestyle during this time, it’s the best possible starting point for your recovery. Even though you might feel quite unwell now, making a few small changes could have a huge benefit.
Diet – if you are struggling to eat enough calories and maintain a healthy weight, it can start to affect your general health. Simple things, like eating little and often or fortifying with protein or calorie rich ingedients, could make a big difference.
Exercise – it doesn’t have to be anything strenuous but gentle exercise such as walking, swimming or cycling can improve your stamina and strength. Exercises like yoga can strengthen muscles, make you more flexible and help you relax, which could also be good for your mental health.
Your transplant team or GP will be able to give you more specific advice and suggest some things to try that are tailored to your specific situation.
Most people will lose their hair after chemotherapy treatment but it usually grows back within a few months.
Your scalp will need to be covered by either a hat or scarf to prevent losing heat in the winter and getting sunburnt in the summer.
Some people take the opportunity to experiment with new hairstyles they have not dared to try before. If you have long hair, you may want to try out some shorter styles before treatment starts.
Your consultant is the senior clinician at your hospital or transplant centre. They have overall responsibility for your treatment. Other healthcare professionals report back to them regularly, so that they have the best overall picture of your health.
They will be able to talk to you in detail about your situation, possible treatment options and the impact they might have. You will have the final say on which treatment is best for you, but they will make sure you have all the information you need to make that decision.
If you have a question about any aspect of your transplant, it’s best to ask your consultant (or someone from your medical team) because they can give personalised advice that is specific to you. Talking about your body and your feelings can be difficult and might make you feel nervous, but that’s perfectly normal.
Here are some pointers that might make a tricky conversation easier:
If you are unsure about what you should be talking to your consultant about, here are a few questions that you might want to consider as a starting point:
Unfortunately, having a stem cell transplant can lead to issues that could have an impact on your life and future plans. Although it’s difficult to think about them at such a stressful time, they should be addressed early so you can be prepared. These issues might not affect you, but it’s important to get the information and support you need just in case. Talk things through with your partner, family and friends, especially if you’re feeling anxious.
You can discuss all your options with your transplant team before you make any possible decisions. You can also ask to be referred to a psychologist or counsellor if you feel you need extra emotional or mental support.
What is likely to happen: The chemotherapy associated with your transplant means that most people will find it difficult to conceive without some professional support.
What should happen: If you would like to have either your eggs or sperm frozen for the future, you can discuss your options with your medical team. They will be able to refer you to a fertility clinic if you decide this is something you want to do.
What could happen: Depending on your situation, your medical team may decide that your treatment must begin straightaway and that options to preserve your fertility are not possible.
Some women do still experience regular periods after their stem cell transplant and are able to have children, so a method of contraception may need to be considered depending on your circumstances.
What is likely to happen: The chemotherapy and radiotherapy given during conditioning treatment also cause damage to your ovaries. This can lead to the menopause (when your menstrual cycle stops) starting earlier than expected. It can affect different women in different ways but you may experience a combination of hot flushes and sweats, vaginal dryness, bladder problems, mood changes, difficulty concentrating or low sex drive.
What should happen: If you have symptoms that are causing discomfort, you will be referred to a gynaecologist by either your GP or medical team.
What could happen: You may be offered Hormone Replacement Therapy (HRT), or other treatments that will help maintain your sex drive and relieve other symptoms.
Transplant success rates vary widely depending on several factors. These include the patient’s age, the blood cancer or blood disorder they have, the type of transplant and their general health prior to transplant.
However, due to improved treatments and better understanding of what makes a good match, patients are generally living for longer and are able to cope better with side effects such as GvHD.
If you would like to know more about how this could affect your own circumstances, please talk to your medical team. They will be able to give you the most accurate information about your own situation.
What is likely to happen: Stem cell transplant patients have a higher risk of developing a secondary cancer later in life. This is due to the chemotherapy, radiotherapy and other possible treatments you may have needed.
What should happen: If you are a woman, it’s recommended that you are screened for breast cancer more regularly than women of a similar age.
Тransplant patients are screened as regularly as people of the same age for other cancers (cervical and colon). So, it’s important that you attend all screening appointments.
What could happen: Just because there is an increased risk of a secondary cancer developing, it doesn’t mean that it will happen. As with all cancers, treatment is more likely to be successful if the cancer is diagnosed early. So, it’s important to check your body regularly and talk to your doctor if you have any concerns.
As well as preparing yourself physically and mentally for your transplant, you will probably need to put some practical plans in place too. Hopefully these suggestions will help relieve some of your worries and concerns, so you can focus on the more important things.
Many people worry about who will look after everyone else while they are in hospital. Ask friends and family for support with your children, pets or home – people are often more than happy to help.
Sometimes people want to help you but are unsure how to, so ask for specific things – like driving you to an appointment, picking up your children from school or sorting things around the house.
Find out if it’s possible to visit one of the isolation units you will stay in beforehand. It will help you visualise what your stay will be like and remove the unexpected as much as possible. This will hopefully mean there are no unnecessary surprises. Every hospital and transplant centre have slightly different rules and procedures, so this is a good opportunity to find out some specific details.
Many parents also find that being prepared for their child’s approaching hospital stay helps them to cope with the situation. It might be a good idea to take your child along too, if you think it could settle their nerves. Take time to ask the questions that are important to you. Find out how often you will be able to visit and the arrangements for staying overnight with your child.
Any situation can be daunting if you don’t feel like you know what’s going on. Smaller concerns around things like Wi-Fi, visitor parking or hospital food can build up quickly, so take control of the situation by finding things out.
Our information on protective isolation may be able to help, but your transplant team will also be happy to answer any questions you might have.
It’s very likely that you will need to take an extended period of time off work to recover from your stem cell transplant. Most people need at least 6 months before they are ready to return. If your employer isn’t already aware of your situation, you should let them know. This will give them time to organise the necessary support you will need when you are ready to return
If you are preparing for your child’s transplant, you should talk to their class or head teacher about the situation. They need to be made aware of the time off your child is likely to have, and the support the school will need to provide, both before and after they return.
Depending on your medical condition, the time between being diagnosed and going into hospital can be very short. This period of time can be very intense and you might have a lot to think about, so here’s a handy list of things that you might want to pack for your stay.
Also, if you get the chance, tell a family member or friend where you keep any spare clothes or other items that you might want brought into hospital later.