We Are Untire! Tiredness & Cancer Fatigue Specialists! Ask Us Anything!

Untire_AppUntire_App Posts: 12 Cancel Related Fatigue Experts
edited August 7 in Ask the Experts
We're proud to bring you the expertise of Dr. Bram Kuiper and Door Vonk, founders of Untire App and Cancer Related Fatigue Experts

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About Untire App

Almost 40% of all cancer patients and survivors struggle with tiredness and fatigue as a side effect of cancer and its treatments. Many often ask what causes fatigue? What can I do about it? The background of cancer-related fatigue (CRF) is poorly understood along with the ways patients can reduce tiredness and cancer fatigue and gain energy for a better quality of life.

The Untire App was created by Dr. Bram Kuiper and Door Vonk to help cancer patients increase energy levels and improve quality of life.  It was developed in collaboration with a team of psychologists, specialists and patients in the field of oncology. You can find out more about Dr Bram Kuiper, Door Vonk & the Untire App Team here.

The app contains a self-guided program to help patients understand tiredness and cancer fatigue and provides tips and exercises to increase energy levels and is now recognised as a recommended NHS resource and part of the NHS App library as a digital tool to help you manage and improve your health.


The Untire app consists of

  • Education to better understand tiredness and cancer fatigue
  • Tips and reminders to improve lifestyle
  • Exercises for body and mind to increase energy levels
  • Online community for support with other CRF individuals
  • Weekly reporting to keep track of energy levels and progress

Untire is free to download and use in the Apple and Google Play app stores in the 25+ EU Countries, UK, USA, Canada, Australia, New Zealand and South Africa. 



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Comments

  • anzo1anzo1 Posts: 1

    I am enquiring on behalf of an elderly friend who has gone through his chemo for Prostate cancer over a year ago and is still feeling very tired and feels the cold. Any tips that could help would be gratefully received.

  • 81byerley81byerley Posts: 1

    My husband is exactly the same. The cancer specialist said that side effects from the chemo can last a long time.

  • agnesagnes Posts: 2

    tss been four years in April since i started my treatment and i finished with the hospiital one year ago but still fatigued and breathless, they said that this could be how it is going to be, so i just get up every day and do what i can ,I have a great husbad who does the shopping and all the heavy stuff plus a cleaer so that help me to do some of the things i used to do . It is very frustrating though but mostly i get by. hope u feel better soon.

  • RobertARobertA Posts: 543 ✭✭✭✭

    I am on Androgen Deprivation Treatment for my Prostate cancer. I have been on the treatment for 30 months now and I am getting more tired each month. I do walk a lot and use exercise bands, which help quite a bit, but I feel guilty that I can't help my wife more with the housework and heavy lifting.

    Rob

  • agnesagnes Posts: 2

    Thanks to all who have sent in stories . makes me feel that i am not alone in this crises that we all have.


    This makes a difference . keep the stories coming and updates.4


    Agnes

  • PeterPeter Posts: 19

    I have been on chemotherapy for bowel cancer since mid 2017, with a number of short breaks. I am about to start cycle 21. I am finding that the roll up effects are now getting much more significant. I have 7 or 8 days of extreme energy loss, then a slow build up of energy for 5 or 6 days, then the am back on chemotherapy again. I try to keep busy, take a walk every day and continue to do jobs around the house but everything is fine becoming hard work and takes much longer to finish. I sleep reasonably well at night and ha a short snooze in the day. Feeling tired is probably wrong, it is more like lethargy. Peter

  • SunshinedaffSunshinedaff Posts: 737 ✭✭✭✭

    Cancer and all the various treatments that we go through to get well, do leave us with immense fatigue, tiredness and very reduced energy levels.

    It is really difficult to adjust to a slower pace of life that may be completely different to how life was pre-cancer. I know I used to charge around a million miles an hour, trying to get from one thing to another. I was probably exhausted then, but just didn’t notice it as much!

    Nowadays, since I have finished treatment and have been recovering, I am very aware that my energy levels become depleted rapidly. I just simply run out of gas! It is a huge learning curve, to readjust and pace myself when doing anything. Sometimes I get it, other times, still completely miss it and overdo it!!

    The one thing I have learned is to keep moving, every day, to do something, either inside or outside. Not to sit on my backside all day. Get up! Is what I tell myself! Even if it’s just tooing and froing back and forth around the house.

    @Peter , I understand the lethargy feeling, but you are still in active treatment. It sounds like you are doing what you can when you are able. The mental fatigue will be affecting you also. It’s hard work to keep going. But you are, and that is brilliant!

    @agnes , sounds like you too are doing everything you can to help yourself. You are right, the effects of chemo and radiotherapy treatment are very long-lasting, longer than we initially think I feel. Over time, it’s a slow process, but you will find your energy levels increase. Keep doing a little every day as you are doing. You are not alone in dealing with this. It affects many of us.

    @RobertA

    Rob, you do so much, you are brilliant! I know keeping busy and doing things helps you, helps to stop the stagnating! You just make sure you look after you! Chat later.

    Lou x

  • PeterPeter Posts: 19

    Thanks Robert. I appreciate your comments. I am trying to keep busy and have just ripped up the laminate floor in the kitchen - will start laying the new floor tomorrow (hopefully) as I am on chemo now and my pump comes off tomorrow.

    My view is do what you can, when you can and rest a bit in between.


    Cheers, Peter

  • Untire_AppUntire_App Posts: 12 Cancel Related Fatigue Experts

    Hi anzo1,

    First, it is great see your friend has you to help support him so he’s not alone with his fatigue. Research has shown that almost every cancer patient is moderately to severely fatigued during the first year after the diagnosis. In addressing fatigue, often times it is not just one big thing but many little things that are draining energy. Every cancer is different and cancer fatigue is also different for each person. Below are some tips that can help:

     

    • Try to stay active physically and mentally and that doesn’t mean just exercise. It can be a mix of things to do: exercise or walks, being with other people, even if it’s just having a short chat, and anything that can keep your mind active, from reading short passages, listening to the radio, or doing a crossword puzzle. Try to strike a balance between activities and relaxation.
    • Get to know the factors that influence your energy level positively and negatively. Understand what kind of activities give you energy. Create a list - Which do you really enjoy doing and which activities, experiences or circumstances are a real drain? Then try to find how you can lessen the impact of those energy drainers.
    • Remember to establish boundaries. Recognize the physical signs that you’re getting tired. Pushing through when you’re already exhausted means you’re overdoing it. Try planning activities ahead of time to avoid feeling overwhelmed (which also costs energy).
    • It’s important to try and focus on the present and stay positive. It can help to avoid negative thoughts and spend your energy on activities that you find enjoyable (to help give you energy)
    • Going through the medical treatments is stressful and people react differently to different types of stress. Stress is the most mentioned factor that drains energy. So, if you reduce stress then you can gain more energy.

     

    We recommend downloading our app (it’s free) so your friend can better evaluate his fatigue then take the specific steps he needs to address it.


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  • Untire_AppUntire_App Posts: 12 Cancel Related Fatigue Experts


    Hi RobertA, It’s well known that ADT leads to increased fatigue compared to men who only underwent a Proctectomy. Some studies show that exercise programs (guided by physiotherapists) can improve someone’s physical condition. Everyone needs to figure out personally what can be the best way to regain energy. We hope the tips we shared can help. (Share the previous tips mentioned in Anzo1)

    It is especially important to manage the feeling of guilt as that will further drain your energy. It can also help to talk about your fatigue and energy levels so those around you (like your wife) realize what you’re going through as some days are better than others. We hear from patients that they feel that friends and family don’t realize the magnitude of what they are going through. Help when you can but be careful not to overdo it.


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  • Untire_AppUntire_App Posts: 12 Cancel Related Fatigue Experts


    You’re right, Prolonged fatigue - and by this we mean many years - occurs in 30 to 40% of all cancer patients and survivors. It is good to hear you’ve discussed this with your husband’s healthcare professional. We hope the tips we shared and the Untire app can offer some help. We shared some tips with @anzo1 - I've posted them below as well for you as we think they'll help your husband too!

    • Try to stay active physically and mentally and that doesn’t mean just exercise. It can be a mix of things to do: exercise or walks, being with other people, even if it’s just having a short chat, and anything that can keep your mind active, from reading short passages, listening to the radio, or doing a crossword puzzle. Try to strike a balance between activities and relaxation.
    • Get to know the factors that influence your energy level positively and negatively. Understand what kind of activities give you energy. Create a list - Which do you really enjoy doing and which activities, experiences or circumstances are a real drain? Then try to find how you can lessen the impact of those energy drainers.
    • Remember to establish boundaries. Recognize the physical signs that you’re getting tired. Pushing through when you’re already exhausted means you’re overdoing it. Try planning activities ahead of time to avoid feeling overwhelmed (which also costs energy).
    • It’s important to try and focus on the present and stay positive. It can help to avoid negative thoughts and spend your energy on activities that you find enjoyable (to help give you energy)
    • Going through the medical treatments is stressful and people react differently to different types of stress. Stress is the most mentioned factor that drains energy. So, if you reduce stress then you can gain more energy.

    Hope this helps!


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  • Untire_AppUntire_App Posts: 12 Cancel Related Fatigue Experts

    We often hear that from patients, that they thought they were alone in this. Friends and family don’t realize the magnitude of what they are going through. One of our users – Marloes – once told us that Untire is also like a friend, a friend who understands you. And of course we have the Facebook community where you can meet others who know what you are going through, which is highly appreciated. 


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  • Untire_AppUntire_App Posts: 12 Cancel Related Fatigue Experts

    The cycle of extreme energy loss and slowly rebuilding while still in treatment is not uncommon. The most important thing is to keep an eye on your own limits. We advise you to remain active, but at your own pace.


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  • MoysiannMoysiann Posts: 1

    Can I ask how I stand with fatigue and work? I am back at work as a community school nurse working 3 days a week. I have to travel 32 miles to work and at the end of the day I feel exhausted and worried about my drive home. I have asked if I can leave early to be told it will come out of your annual leave. I would only leave work once I have completed my work leaving only written records to be done which as I have a portable lap top can be done at home.. how do I take this forward? Thanks

  • SunshinedaffSunshinedaff Posts: 737 ✭✭✭✭

    Hi @Moysiann ,

    That sounds horrible, and very mean, especially if you are prepared to do the paperwork at home.

    I can't offer you any advice other than to contact the Macmillan Cancer Support group who may have some wisdom on this or be able to direct you to the right people.

    Perhaps some of our other lovely people here will be able to suggest anything too. I hope so.

    How are you otherwise? The fatigue and extreme tiredness is something that takes a long time to improve, and even then your energy levels might not be as they were pre-cancer.

    You are very welcome here, I hope you will find it a friendly place, where you can chat about anything.

    Take care,

    Lou x

  • RobertARobertA Posts: 543 ✭✭✭✭

    Hi @Moysiann

    I am shocked to hear your story. How on earth can it be right that your employer should treat you this way following cancer treatment, especially as you have offered a realistic solution.

    I wonder who your employer is? Not the NHS I hope. Do they have an appeals process through your HR department or Union?

    Sorry if I sound cross but I am. Any kind of cancer treatment is stressful and is invariably accompanied by real tiredness which often lasts a very long time after treatment. I agree with Lou @Sunshinedaff that it might be worth having a chat with with MacMillan Cancer Support who may have some insight into situations like yours. I am a volunteer with MacMillan and I know they have training sessions for employers on how to manage staff with cancer. I also know several people returning to work after cancer who have been treated with kindness, understanding and consideration by their employers, whether private or public.

    I hope you will keep in touch. We are a friendly and supportive group and we love to be here for one another.

    Rob x

  • Untire_AppUntire_App Posts: 12 Cancel Related Fatigue Experts

    @Sunshinedaff@Moysiann Reintegrating back to work is an important topic that isn't talked about enough. One of the main problems of fatigued cancer patients is that fatigue is invisible to others. Because of this, they often encounter disbelief instead of understanding and acknowledgement from those around them.  As @Sunshinedaff stated, Macmillan has great resources regarding this topic including a support line that you can call to get more information. It’s important to understand your rights as an employee. https://www.macmillan.org.uk/information-and-support/organising/work-and-cancer/information-for-employees#161440 We recommend talking about your cancer fatigue with your boss and colleagues. Some days are harder than others and it’s important they understand how you are feeling. When you are fatigued during the work day, try to take a small break, even just a couple minutes to take a few deep breaths (relaxation exercises) or having a tea can help give you energy. Hope you will continue to keep us all updated on your situation.


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  • VicVic Posts: 1

    Wanting to know from your experts if I let myself sleep I can sleep 12 to 14 hours each night is it a good idea to have the sleep you need with no alarm clock or should I limit myself to 7 or 8 hours a night I have myeloma but finished treatment which started with chemo in May and finished with stem cell transplant end of November but when having transplant got sepsis pneumonia and flu what is the average amount of time you feel tired for is it 6 months 1 year Or more it seems rather a waste of time to be asleep so much unless it is good for me to have as much sleep as I need would appreciate any professional advice from your team.at the moment all bloods have good readings

  • SunshinedaffSunshinedaff Posts: 737 ✭✭✭✭

    Hi @Vic

    Welcome to the group, I am not an expert, but I am sure one will answer. That is a lot of sleep on a nightly basis! Tiredness and fatigue as a result of cancer and all the treatments can take a long time to improve. My first thought would be to check with your dr too, in case there is another reason for your long sleep pattern.

    If you are having good sleep, perhaps setting an alarm and waking up at a reasonable time each day may help your body to form a new routine?

    I know that if I sit around too much not doing anything that breeds more of not wanting to do anything, just wondering if the length of sleep works in the same way, your body gets used to the pattern? I apologise if this is just ‘tosh’, I’m sure someone will put me right!! 😊

    I hope you continue to make a good recovery, also that your long sleeps are not preventing you from enjoying your days.

    Have a good day!

    Lou x

  • RobertARobertA Posts: 543 ✭✭✭✭
    edited April 8

    Hi @Vic

    I am on long term hormone treatment and tiredness is an issue for me. I am not an expert, but as Lou said, someone will answer soon.

    My wife kicks me out of bed at 7.30 every morning whether I like it or not. I tend to go to bed at 10.30pm so I usually have around 9 hours. I am nearly always tired when i get up but I am usually hungry too, so I get the breakfast ready, switch the radio on and start the day with a nice cuppa.

    I have found that getting outdoors and having little walks helps me to feel a bit fresher. I often don't feel like it at first, but once I have pushed myself out of the door, I am fine. We have a park nearby, Spring is in the air and everything is starting to grow. Lovely.

    I like playing my piano, and I meet friends for lunch or just a chat. I love being part of this community, reading people's posts and writing a few myself. Just being involved in things seems to stimulate my brain and keep the tiredness at bay for a while.

    @Sunshinedaff

    Morning Lou

    The thought of you sitting around doing nothing has really amused me. You make me tired just reading about all the things you get up to. x

    Rob

  • Untire_AppUntire_App Posts: 12 Cancel Related Fatigue Experts

    @Vic This is a good question. Everybody has his/her own need for sleep, but it must not be longer than 8 hours as 12-14 hours a night is much too long. Regarding tiredness/fatigue you should see a medical doctor to rule out any underlying issues. They can also recommend a sleep improvement program that may include sleep restriction. The aim of this strategy is to shorten (restrict) the time that you spend in bed (maximum 8 hours). This will make you more active (even if it’s minimal) and this in turn will increase your need to sleep and make you more aware of the feelings of being sleepy.

    There is no general guideline on recovery time, it will take some time to recover from a stem cell transplant. It varies from person to person and is dependent on the disease, the other treatments someone received and any complications experienced. Generally speaking recovery takes: 3 to 6 months for an Autologous Transplant. We hope this answer is helpful. Please keep us all updated on your progress. Thanks to @Sunshinedaff @RobertA and all others here in this group that help support one another.


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  • mazdamazda Posts: 2

    i am 2years post lumpetomy finished tratment apart from Tamoxifen hormone pill last may 2018 but still find i am extremely tired its an effort to keep up to date with house/gardening could it still be to do with the cancer/treatment ?

  • gjsgjs Posts: 2

    9:31AM

    IN COPING WITH TREATMENTS & SIDE EFFECTS

    5 years on from finishing breast cancer treatment (lumpectomy, chemotherapy, double mastectomy and reconstruction) and I am still suffering from chronic fatigue (formally diagnosed by my GP)which can get to extreme levels at times when I just cannot do anything for a few days. I have been for all the blood tests , I have got myself a dog which I walk gently daily, I attend pilates classes when I fell well enough and have cut my working hours down and feel I can manage my condition well most of the time but still suffer from these unpredictable "meltdowns" Will they ever end?

  • mazdamazda Posts: 2

    Well your post gjs at least answers my queries if us my fatigue to do with cancer treatment I can sympathize with you as I feel the same it is so annoying that life is still so different post cancer/treatment you so want to be normal but just can't get there

  • Untire_AppUntire_App Posts: 12 Cancel Related Fatigue Experts

    @mazda Yes, unfortunately, fatigue can happen at varying points in the cancer journey. Even after treatment has ended, sometimes this means years later, it is estimated that 30-40% of cancer patients and survivors still suffer from it. It’s important to always talk to your doctor about fatigue before doing anything else. Your doctor can evaluate you for any medical causes or if other conditions can be contributing to the fatigue.  Prolonged fatigue is not widely discussed and many are surprised to find out that they just don’t go back to normal once treatment is completed. Be gentle on yourself and patient. Activities like small walks can help energy levels but be sure not to overdo it. Ask those around you to help out with daily tasks, chores and gardening. Creating a support system will help you manage through it. Remember you’re not alone in this. 


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  • Untire_AppUntire_App Posts: 12 Cancel Related Fatigue Experts

    @gjs Great suggestions about what you can do to help with the fatigue symptoms. Glad to hear you are managing it all well. The ‘meltdowns’ are the unfortunate aspects of cancer-related fatigue and what makes it different than just being tired. Try to have plan for when these sudden, extreme fatigue meltdowns happen. Over time, it will get better but it does take time. Continue to work on it and please continue to update us on how you are doing. 

     


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  • Untire_AppUntire_App Posts: 12 Cancel Related Fatigue Experts

    @mazda @gjsAfter treatment ends, you want to go back and do all the activities and resume life as it was before. Resetting expectations and adjusting to this ‘new normal’ is one of the most challenging aspects we hear from patients. It’s something that isn’t really discussed and can be a bit of a surprise. Everyone is different when it comes to their fatigue and recovery time. We know that isn’t much comfort but try to take it one day at a time.  


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