1st Speaker- Stacey Prieur RN, BSN,CHTC, Transplant Coordinator, Blood and Marrow Stem Cell Transplant Program at the Barbara Ann Karmanos Cancer Center- Has been in BMT since 1991.
Fatigue is different than tired. It is an unrelenting exhaustion that does not go away with rest alone. It can be chronic, and it can come and go. It is the #1 complaint of oncology patients, so it is important not to be too hard on yourself about it.
It can cause brain fog. Why does fatigue come with transplant/cancer treatment? A new immune
system, responses to intense chemotherapy/radiation, major changes to your daily structure, lower appetite that could affect nutrition, low blood counts, side effects of medications, hormonal imbalances, pain, stress, other underlying health issues.
Tips to manage it the best you can-
1) Talk about it with your health care team, maybe even a counselor.
2) Try to create structure with your day, it can lower stress.
3) Shower daily, sit in a chair as much as possible, try to walk what you can daily.
4) Keep a diary of when you are most tired, when you are most awake, and try to plan accordingly.
5) Set limits and learn to not overdo it. Do things in pieces instead of trying to accomplish everything at once. Pace yourself.
6) Talk to a peer mentor.
7) Try meditation or hobbies to relax you and lower stress.
9) Plan ahead
10) Accept help or consider paying for it (Ex. Get a housekeeper).
11) Freeze extra meals
12) Allow yourself to rest
13) Balance rest with activity
15) Plan ahead
16) Accept help or consider paying for it (Ex. Get a housekeeper)
17) Freeze extra meals
18) Allow yourself to rest
19) Balance rest with activity
2nd speaker- Jennifer Gillette, LMSW, MSW Staff Social Worker at nbmtLINK- over 20 years oncology experience
And now, I will share some of the great tips we received from patients. Keep in mind, what works for one person might not be the exact formula for you. However, you will figure out how to best manage yours by taking a trial-and-error approach. If it is something you and your doctor are comfortable with, try it at least a few times before you automatically say it does not work for you.
• It is important to focus on what we can change when managing fatigue. We cannot change a diagnosis, a treatment path, getting older, etc.
• We can try to change pain management, how one is coping/depression, our nutrition, our sleep habits, management of other possible health issues, muscle fatigue, and blood levels. We can also look at how we manage our time and prioritize what we can get done in a day.
• Sugar and excess carbs such as those found in alcohol can make sugar levels spike and plummet. Therefore, they can make fatigue worse.
• It is important to learn your limits with your energy and try not to overdo too much. You want to steadily grow in endurance but going way beyond your limits one day can cause great consequences for the next few days.
• Exercise is highly recommended to those with fatigue as building back muscle increase energy. It can also increase mood, help memory, and keep you at a healthy BMI, (body mass index).
• You can start exceedingly small, perhaps 5 minutes a day or by starting physical therapy. Livestrong and the YMCA have also developed a great program for cancer patients.
• 30 minutes a day as recommended for many adults is not realistic for most patients. It is important to start small an add to it as you can tolerate it.
• Relaxation, mindfulness, and CBT Therapy can improve quality of life and help people cope better. Some people also do better with medication for anxiety/depression as well.
• It is important to eat enough protein and healthy fats to promote healing.
• Keep hydrated, drink 8- 8oz glasses of water a day.
• Practice good sleep hygiene. Do not watch TV or play on screens for 30 minutes before bed. Only sleep or be intimate in your bed. Other activities in the bed can make your brain more stimulated before sleeping. Do not eat right before bed. Consider a sleep study if apnea suspected.
• Some people get Ritalin/Methylphenidate on occasion to help them have more energy for special events. Taking it daily will lessen its ability to help but it can give a boost for a special day or when trying to start back to an exercise routine.
• Fatigue is challenging. It is important to plan ahead, ask for help, and to prioritize what you need done
She shares to go outside every day, find humor, and put on your lipstick. Anything that helps you feel better helps you get through this. She chooses to just accept the changes in herself and to walk in gratitude for what she has. She keeps positive as she focuses on trying to help with the care of others, especially with helping with her grandbaby.
After his transplant, Tom really struggled with fatigue and strength issues. Once again, his mindset determined how he was going to push thru it. He belonged to a gym and started as quickly as he could to get back. This took time as he even had a hard time lifting his feet after the transplant.
One time, he even fell asleep in the tub. However, he just kept trying to get stronger every day and within a few years he ran in a leukemia charity event with all three of his kids. “I had to do it, I needed to have a goal.”
Tom said after five years, he felt rather good.
Rhonda Kokot- Survivor
• Shared that she never would have wanted leukemia but that her experience has turned into a gift. It has taught her how to live her best life.
• As a runner, she shares that she sees the transplant journey like a marathon and not a sprint. She framed her experience to be a mile she had to frame her brain to run 26 times, (instead of looking at the marathon as a whole 26 miles at once).
• Everyday she asked herself, what can I do to make myself physically stronger, mentally stronger/more positive, spiritually stronger, and socially stronger. She believes 80% of this fight was psychological. Envision your goal.
• In the beginning, she found it helpful to ask for a treadmill for her room. She found even short walks on it or even moving from the bed to a chair made her physically stronger.
• She emphasized the importance of having someone to advocate for you. You cannot do everything and need to reserve your strength for things you need to do.
• Keep your eye on the prize, your second chance at life.
• Ask for help, you need a support network.
• Change negative mindsets. Remember, you are not a burden, you are a blessing.
• It is hard to keep up with others socially. However, you need support. She chose to blog. This also allowed her to control what she shared.
• She had someone that was her liaison to control her social agenda. They arranged visits when she was up to it but also informed others when
she was not up to visitors.
• It helps to have someone taking care of the financial aspects of this situation. This person can assist with negotiating, payment plans, etc.
• Spiritually, she found that she had to figure out what this was in her life. What is my connection? For her, this went beyond a belief of a doctrine, this involved a belief that I can and will continue.
• Be at peace with your choices.
• She shared several losses. She took time to review options every time she faced a loss. You cannot always choose what happens to you, but you can choose how you handle it.
• She still lives in fear and lives everyday as if it could be her last and it has been 17 years.
• Fighting for your life takes enormous courage and you need to will yourself out of bed every day.
Discover what time of day your body is at its peak and try to schedule what you need to do during these times
Allow yourself breaks
Break bigger tasks into smaller tasks
Ginseng Tea- Mayo study 2gram a day about 8 weeks improvements
Find ways to be social, even on the transplant floor
High Quality Foods instead of junk food
When able, get involved (He helps others going through the journey now)
Fatigue is no joke, get the rest you require, and it helps you get more done
Jen recommends keeping a list of the gains you make so you have
something to reference when you feel discouraged. Jen learned how to
adapt with the changes she noticed with herself. Walking around the office
once an hour and resting her eyes from the computer were important once
she was strong enough to return to work. She also modified her time in the
Jen recommends the video, The
New Normal, made by nbmtLINK.
Visit our website, www.nbmtlink.org. Jen shares how important it was to
see this recovery as a marathon and not a sprint.
We acknowledge and thank the following Link Partners for their ongoing support.
• The Leukemia & Lymphoma Society
• Incyte Corporation
• Pharmacyclics & Janssen