Always follow the advice of your care team.
Quality of Life
Emotional Wellbeing
As you recover from transplant, you will may feel many different emotions. It is important to share your feelings with someone who listens and supports you. This may be someone other than your primary caregiver. It is also important for those around you to understand that you will not be able to do all the things you could prior to your transplant.
You may find these challenges overwhelming, and at times they may cause you to feel angry or depressed. There are many ways to cope with these issues. Your care team is available to support and direct you to appropriate care. You may also want to use some of the resources, programs and organizations referenced in the “Resources” section.
Remember that this is a challenging time for your family and friends as well. They are adjusting to the stress of your treatment, as well as to the precautions following transplant.
Coping tips and techniques
1. Take control where you can
People usually feel better when they take some action.
2. Talk with others
Try not to be alone with your thoughts and worries. Talk with your care team. You might also talk with a mental health counselor (social worker, psychiatrist, psychologist, etc.), friends and family, other patients through peer support, online support groups, or a chaplain or other spiritual adviser.
3. Write it down
Try writing down what’s on your mind. Writing may allow you to reflect on experiences and let go of some negative thoughts.
We also recommend writing down your questions and bringing them to your appointments. This will help to keep you organized and can reduce stress.
4. Make a schedule
Create a loose schedule to provide some structure and routine. Some activities may include reading, card games, a short walk, catching up on your favorite TV shows, listening to music, or pursuing a hobby.
5. Take care of yourself
6. Try to focus on the things you enjoy
7. Set goals
Set realistic goals for yourself and adapt your activities to your current energy levels. Get to your goals safely and celebrate when you reach them.
8. Stay hopeful
There are many ways to build your sense of hope. For example, reflect on your spiritual beliefs, or think about the positive things in your life. Consider the personal strengths that helped you meet challenges in the past. Being hopeful is different from being cheerful and happy. Don’t pretend to be upbeat if you are not. It’s ok to have bad days.
9. Consider medication and ask for help
You may benefit from taking a prescription medication if you have anxiety or depression that interferes with your daily life. Your care team can recommend the most appropriate medicine or refer you to a mental health professional. If you are feeling hopeless, want to give up, or stop following your treatment plan, please reach out to your care team immediately. If you have thoughts of wanting to hurt yourself or end your life, immediately call 911 or go to your local emergency room.
Remember that your care team continues to be available to support you during your recovery. Recovery for stem cell transplant patients varies from person to person. Depending on your physical, social, and emotional adjustment process, it may take a year or more for you to fully recover and resume the lifestyle you had prior to your transplant.
As you recover from transplant, you will may feel many different emotions. It is important to share your feelings with someone who listens and supports you. This may be someone other than your primary caregiver. It is also important for those around you to understand that you will not be able to do all the things you could prior to your transplant.
You may find these challenges overwhelming, and at times they may cause you to feel angry or depressed. There are many ways to cope with these issues. Your care team is available to support and direct you to appropriate care. You may also want to use some of the resources, programs and organizations referenced in the “Resources” section.
Remember that this is a challenging time for your family and friends as well. They are adjusting to the stress of your treatment, as well as to the precautions following transplant.
- Recognize that there will be times when your caregiver will need to take a break.
- Maintain open communication to deal with any feelings of anger, frustration, and/or resentment.
- Encourage others to ask questions and to share their feelings with you.
Coping tips and techniques
1. Take control where you can
People usually feel better when they take some action.
- Try to sort out your feelings and identify what is making you feel worried, sad, or angry.
- Decide what is most helpful to you when receiving medical information. For example, you may wish to have it written down or have a loved one involved in discussions. Ask your care team questions you may have about restrictions, their impact on your life, and how to adjust to these changes. Some people feel more comfortable when they know what to expect.
- Think about how much information you want to share with friends, family, and coworkers, and how you might answer people’s questions.
2. Talk with others
Try not to be alone with your thoughts and worries. Talk with your care team. You might also talk with a mental health counselor (social worker, psychiatrist, psychologist, etc.), friends and family, other patients through peer support, online support groups, or a chaplain or other spiritual adviser.
3. Write it down
Try writing down what’s on your mind. Writing may allow you to reflect on experiences and let go of some negative thoughts.
We also recommend writing down your questions and bringing them to your appointments. This will help to keep you organized and can reduce stress.
4. Make a schedule
Create a loose schedule to provide some structure and routine. Some activities may include reading, card games, a short walk, catching up on your favorite TV shows, listening to music, or pursuing a hobby.
5. Take care of yourself
- Try relaxation techniques, such as deep breathing, meditation, or yoga at home. A range of apps are available.
- Try to stay active.
- Share any concerns you have about changes in your physical appearance from your cancer and treatment (hair loss, scars, weight changes, etc.).
- Try to maintain a regular sleep pattern. Discuss this with your care team.
- Prioritize what feels most important to you.
- Ask for and do your best to accept help from family, friends, or coworkers.
6. Try to focus on the things you enjoy
- Stay connected with family and friends.
- Take time to do things that bring you joy or pleasure, like visiting with loved ones (if possible, in person; if not, then via phone, email, Skype, or video chat), reading, listening to music, or watching movies at home.
7. Set goals
Set realistic goals for yourself and adapt your activities to your current energy levels. Get to your goals safely and celebrate when you reach them.
8. Stay hopeful
There are many ways to build your sense of hope. For example, reflect on your spiritual beliefs, or think about the positive things in your life. Consider the personal strengths that helped you meet challenges in the past. Being hopeful is different from being cheerful and happy. Don’t pretend to be upbeat if you are not. It’s ok to have bad days.
9. Consider medication and ask for help
You may benefit from taking a prescription medication if you have anxiety or depression that interferes with your daily life. Your care team can recommend the most appropriate medicine or refer you to a mental health professional. If you are feeling hopeless, want to give up, or stop following your treatment plan, please reach out to your care team immediately. If you have thoughts of wanting to hurt yourself or end your life, immediately call 911 or go to your local emergency room.
Remember that your care team continues to be available to support you during your recovery. Recovery for stem cell transplant patients varies from person to person. Depending on your physical, social, and emotional adjustment process, it may take a year or more for you to fully recover and resume the lifestyle you had prior to your transplant.
Sexual Health
Sexual health is an important quality of life issue that often needs to be addressed after transplant. Sexual health is not just about sexual activity, or only relevant if you are in a relationship. Sexual health includes:
Although you may be able to resume your prior pattern of sexual activity after transplant, it is likely you also may experience some changes. Some of these changes may be temporary, and some may be longer lasting. For example, sometimes survivors struggle with body image or feeling less attractive due to long-term illness and treatment. Many patients often feel anxious or even frightened to begin having sexual activity again after transplant.
For patients who are not partnered, it is very common to have concerns about dating and meeting a new partner after transplant. For patients who are partnered, it is very important that you communicate with your partner about how you are feeling as well as your hopes and worries about resuming physical intimacy. Often, partners are not sure how to approach this experience and together couples do best when they can communicate and take small steps as they move towards restarting physical intimacy. There are many ways to share physical affection and explore being together to help you reconnect with your partner. There is support for you and treatment options are available from your care team. Talk candidly with your care team if you have any questions about when to resume certain sexual activities
Resources at Dana-Farber
Dana-Farber’s Sexual Health Program offers counseling, education, and treatment to help restore sexual functioning for cancer survivors and partners. The program, which is part of Dana-Farber’s Adult Survivorship Program, specializes in sexual health issues after transplant, including managing vaginal GVHD, addressing low desire, and considering hormone replacement therapy.
To learn more about the Sexual Health Program or schedule an appointment, call 617-632-4523. Or visit www.dana-farber.org/sexualhealth.
Medical Issues
Before resuming sexual activity after transplant, talk with your care team about precautions to keep you safe.
Sexual activity can be associated with the possibility of tearing of skin or mucous membranes. If you engage in any penetrating acts, make sure the area is well lubricated to reduce the risk of friction tears. For example, anal sex can cause more tissue damage than vaginal or oral sex, so it can put an immunosuppressed patient at an increased risk of infection. Because the anus lacks natural lubrication, it is important to use a water-based lubricant and a condom every time you have anal or any other type of sex. If you prefer to have anal sex, you should avoid having it when your white blood cells are low (neutropenia). Wait until your white blood count is in the normal range. Other sexual activity that is specifically associated with high possibility of tearing skin like biting should be avoided post-transplant.
Condoms are recommended to reduce potential of infection and prevent the transmission of sexually transmitted infections. We encourage you to speak with your care team approximately 12 months post-transplant to revisit questions about the possibility of resuming sexual activity without a condom.
If you have a vagina:
If you have a penis:
Fertility After Stem Cell Transplant
Your fertility may be affected after a stem cell transplant, due to chemotherapy and radiation treatments. Family planning and related issues should be discussed with your care team before transplant. The following organizations can provide more information:
Brigham and Women’s Hospital Center for Reproductive Medicine
617-732-4222
www.brighamandwomens.org/reproductivemedicine
FertileHOPE—fertility resources for cancer patients
888-994-HOPE
www.fertilehope.org
The American Society for Reproductive Medicine
205-978-5000
www.asrm.org
Please refer to the comprehensive guide - Stem Cell Transplantation: An Information Guide for Patients and Caregivers - for more information.
Sexual health is an important quality of life issue that often needs to be addressed after transplant. Sexual health is not just about sexual activity, or only relevant if you are in a relationship. Sexual health includes:
- Body image
- How we think and feel about ourselves
- Intimate relationships
- Fertility and reproductive health
Although you may be able to resume your prior pattern of sexual activity after transplant, it is likely you also may experience some changes. Some of these changes may be temporary, and some may be longer lasting. For example, sometimes survivors struggle with body image or feeling less attractive due to long-term illness and treatment. Many patients often feel anxious or even frightened to begin having sexual activity again after transplant.
For patients who are not partnered, it is very common to have concerns about dating and meeting a new partner after transplant. For patients who are partnered, it is very important that you communicate with your partner about how you are feeling as well as your hopes and worries about resuming physical intimacy. Often, partners are not sure how to approach this experience and together couples do best when they can communicate and take small steps as they move towards restarting physical intimacy. There are many ways to share physical affection and explore being together to help you reconnect with your partner. There is support for you and treatment options are available from your care team. Talk candidly with your care team if you have any questions about when to resume certain sexual activities
Resources at Dana-Farber
Dana-Farber’s Sexual Health Program offers counseling, education, and treatment to help restore sexual functioning for cancer survivors and partners. The program, which is part of Dana-Farber’s Adult Survivorship Program, specializes in sexual health issues after transplant, including managing vaginal GVHD, addressing low desire, and considering hormone replacement therapy.
To learn more about the Sexual Health Program or schedule an appointment, call 617-632-4523. Or visit www.dana-farber.org/sexualhealth.
Medical Issues
Before resuming sexual activity after transplant, talk with your care team about precautions to keep you safe.
Sexual activity can be associated with the possibility of tearing of skin or mucous membranes. If you engage in any penetrating acts, make sure the area is well lubricated to reduce the risk of friction tears. For example, anal sex can cause more tissue damage than vaginal or oral sex, so it can put an immunosuppressed patient at an increased risk of infection. Because the anus lacks natural lubrication, it is important to use a water-based lubricant and a condom every time you have anal or any other type of sex. If you prefer to have anal sex, you should avoid having it when your white blood cells are low (neutropenia). Wait until your white blood count is in the normal range. Other sexual activity that is specifically associated with high possibility of tearing skin like biting should be avoided post-transplant.
Condoms are recommended to reduce potential of infection and prevent the transmission of sexually transmitted infections. We encourage you to speak with your care team approximately 12 months post-transplant to revisit questions about the possibility of resuming sexual activity without a condom.
If you have a vagina:
- You may experience vaginal dryness, decreased libido, or decreased lubrication when sexually aroused.
- Use an adequate lubricant (for example, Astroglide or Liquid Silk) in order to make vaginal intercourse more comfortable. Lubricants reduce friction with sexual activity.
- Many people who undergo treatment-induced menopause experience vaginal dryness and can benefit from using a vaginal moisturizer on a regular basis. Vaginal moisturizers provide longer-acting moisture replacement than vaginal lubricants. Moisturizers are typically used 2-4x per week as needed.
- Vaginal moisturizers, such as Replens, Hyalo Gyn, or Luvena may be purchased over-the-counter.
- Don’t use petroleum jelly, such as Vaseline, as a vaginal lubricant or moisturizer.
- Vaginal estrogen can also treat vaginal dryness. Discuss this with your care team.
- Vaginal GVHD can also cause pain, tightening, or dryness of the vagina. This is not uncommon and there are a number of effective treatment options to help address this issue. If this is an issue, speak with a clinician, such as a gynecologist, who is knowledgeable about treating vaginal GVHD.
- You may experience a change in menstrual cycle after treatment. In some cases, periods stop completely, and you may experience an early onset of menopause. Hormone replacement therapy may be an option.
- If you experience vaginal bleeding, contact your care team. Do NOT use tampons for vaginal bleeding. The use of tampons may increase your risk of infection.
If you have a penis:
- You may experience a temporary change in sperm production and/or color.
- You may experience lack of sexual desire or problems with erectile dysfunction, ejaculation, orgasms, and/or urinary leakage. There are several options to help restore erectile function and address low desire, including:
- Oral medications for erectile dysfunction, such as sildenafil citrate (Viagra), vardenafil (Levitra), or tadalafil (Cialis)
- Penile injections or implants to help achieve an erection
- Vacuum device (small pump) placed over the penis to increase blood flow
- Pelvic floor physical therapy, which may strengthen an erection and improve bladder control
Fertility After Stem Cell Transplant
Your fertility may be affected after a stem cell transplant, due to chemotherapy and radiation treatments. Family planning and related issues should be discussed with your care team before transplant. The following organizations can provide more information:
Brigham and Women’s Hospital Center for Reproductive Medicine
617-732-4222
www.brighamandwomens.org/reproductivemedicine
FertileHOPE—fertility resources for cancer patients
888-994-HOPE
www.fertilehope.org
The American Society for Reproductive Medicine
205-978-5000
www.asrm.org
Please refer to the comprehensive guide - Stem Cell Transplantation: An Information Guide for Patients and Caregivers - for more information.