Post Cancer Fatigue

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Comments

  • blueroses
    blueroses Member Posts: 524
    tamiwv said:

    Fatigue
    Hi blueroses - I had ovarian cancer in 2004. I ended up with Stage IIIC. I worked up until last November when I couldn't do it anymore. The overwhelming fatigue is awful. I can't think clearly. Only have about 4 good hours a day to do what I need to do. I've tried provigil, but it stopped working after 3 weeks. My doctor has put me though I don't know how many tests - all came back normal. I recently read the article about Post Cancer Fatigue and was relieved to know I'm not crazy. I'm 51 and thought that leaving work would help me - it hasn't. Same old fatigue is still here. I exercise and improved my diet. Do you happen to know if SS Disability supports Post Cancer Fatigue?

    Fatigue and Disability
    Big topic. Well first of all I live in Canada so if you aren't in Canada you would have to check with your disability folks wherever you are. I know that here you can receive disability for Chronic FAtigue Syndrome but getting that diagnosis is near impossible especially for those of us who have been through cancer treatments because there are a whole number of things that can cause our fatigue and the way they diagnose CFS proper is that you have to have long lasting fatigue with no feelings of rest with NO OTHER REASONS FOR YOUR FATIGUE. With all the meds we had and may be on that also cause tiredness or from just stress alone there is no way they will diagnose us.

    I have been on disability since my transplant which was in 1991 because of fatigue, a condition they say is 'like fibromyalgia', plus early arthritis (from the radiation they feel) and a damaged heart from chemo. There are other medical issues I deal with but that's besides the point.

    If you have a really good GP (family doctor) who can stand up for you and your fatigue that is causing you so much distress you may be able to qualify for disability especially if you have other health issues that also keep you down. Here we have two different disability applications, one for straight one issue disability situations and another for a disability as a result of multiple physical problems.

    Take care, Blessings, Blueroses.
  • SZQ said:

    post surgery/treatment fatigue
    I had cervical cancer surgery/treatments back in 1998 & to this day even THINKING about doing something as simple as cleaning my glasses, blowing my nose, much less get up to go to the bathroom is a MAJOR energy drain.

    I have had dieticians alter my food intake thru the years as the chemo/radiation has done damage internally. With cervical cancer I had a radical hysterectomy in which ALL my female parts were removed.

    This included cutting thru my urethra tubes (what my pee passed thru), radiation, which focused on my lower GI to get rid of any cancerous lymph nodes outside the uterus, causing internal sunburn.

    Result: making absolutely certain I knew where EVERY bathroom was as anything I eat/ate would go thru me like water or give me severe diarhea. Dehydration is a factor in FATIGUE.

    Treatments also affected my mental health due to loss of natural horomones, my vision, hearing loss, taste buds, to name a few causing depression which factors in fatigue. Life as I knew it changed forever.

    I am also a recovering addict/alcoholic (18 yrs) & by the grace of god & support programs I am learning to turn negatives into positives. It's a daily process & I still struggle but life is good:)

    Hang in there!!

    This comment has been removed by the Moderator
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  • lajolielolita
    lajolielolita Member Posts: 1
    SZQ said:

    post surgery/treatment fatigue
    I had cervical cancer surgery/treatments back in 1998 & to this day even THINKING about doing something as simple as cleaning my glasses, blowing my nose, much less get up to go to the bathroom is a MAJOR energy drain.

    I have had dieticians alter my food intake thru the years as the chemo/radiation has done damage internally. With cervical cancer I had a radical hysterectomy in which ALL my female parts were removed.

    This included cutting thru my urethra tubes (what my pee passed thru), radiation, which focused on my lower GI to get rid of any cancerous lymph nodes outside the uterus, causing internal sunburn.

    Result: making absolutely certain I knew where EVERY bathroom was as anything I eat/ate would go thru me like water or give me severe diarhea. Dehydration is a factor in FATIGUE.

    Treatments also affected my mental health due to loss of natural horomones, my vision, hearing loss, taste buds, to name a few causing depression which factors in fatigue. Life as I knew it changed forever.

    I am also a recovering addict/alcoholic (18 yrs) & by the grace of god & support programs I am learning to turn negatives into positives. It's a daily process & I still struggle but life is good:)

    Hang in there!!

    I am always tired and no one understands!
    I am hodgkins lymphoma survivor. I was diagnosed in 2000. I am only 26 and I feel like I am 86. All my doctors say the same thing... Well you have a hypothyroid so lets check those labs and see if its not your thyroid. Yep, it never is! No doctors seem to have any answers and yet everyone close to me either think I making my fatigue up or they think they have a diagnosis for me. I wish I could make people understand how I feel. I am sooo tired almost all the time and adderall is the only thing that makes me feel like a normal person with a normal energy level. I hate to be a person that depends on a drug but the truth is, I do. Without adderall I wouldn't be able to work, heck I wouldnt be able to get out of my bed because I just feel that tired. But i cant tell this to my family and friends because they cant understand. I dont know how and I dont know why but having cancer/chemo/radiation changed me and I feel less alone to know there are others out there that feel the way i do.
  • cwcad
    cwcad Member Posts: 117

    I am always tired and no one understands!
    I am hodgkins lymphoma survivor. I was diagnosed in 2000. I am only 26 and I feel like I am 86. All my doctors say the same thing... Well you have a hypothyroid so lets check those labs and see if its not your thyroid. Yep, it never is! No doctors seem to have any answers and yet everyone close to me either think I making my fatigue up or they think they have a diagnosis for me. I wish I could make people understand how I feel. I am sooo tired almost all the time and adderall is the only thing that makes me feel like a normal person with a normal energy level. I hate to be a person that depends on a drug but the truth is, I do. Without adderall I wouldn't be able to work, heck I wouldnt be able to get out of my bed because I just feel that tired. But i cant tell this to my family and friends because they cant understand. I dont know how and I dont know why but having cancer/chemo/radiation changed me and I feel less alone to know there are others out there that feel the way i do.

    I know how you feel
    I am relatively knew to this board but I am completely familiar with fatigue. I am three years out of treatment and still tire easily. I was a construction worker prior to diagnosis. When I worked I usually worked seven days a week for months on end. Then the job would end and I would go hunting or fishing. The last job I had was cleaning my carpet one spot at a time. IF I did two spots I got so dizzy that I was stumbling and tripping all over the place.

    I need to get back to work. I don't have the strength to do what I once did. I don't have any education either so a new career for an over the hill dirt head does not look good either. a I need to be able to go back to work. that means I need to get over this fatigue. I feel like I am being lazy. But no matter how I feel I still do not do anything. I don't do anything because I do not have the strength and stamina to continue. I have tried working through the fatigue. All that does is set up another set back. These set backs make me reticent to do anything at all because getting set back is depressing which further complicates my recuperation.

    There are people here that know what you are talking about. At least one...ME!!!
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94

    I am always tired and no one understands!
    I am hodgkins lymphoma survivor. I was diagnosed in 2000. I am only 26 and I feel like I am 86. All my doctors say the same thing... Well you have a hypothyroid so lets check those labs and see if its not your thyroid. Yep, it never is! No doctors seem to have any answers and yet everyone close to me either think I making my fatigue up or they think they have a diagnosis for me. I wish I could make people understand how I feel. I am sooo tired almost all the time and adderall is the only thing that makes me feel like a normal person with a normal energy level. I hate to be a person that depends on a drug but the truth is, I do. Without adderall I wouldn't be able to work, heck I wouldnt be able to get out of my bed because I just feel that tired. But i cant tell this to my family and friends because they cant understand. I dont know how and I dont know why but having cancer/chemo/radiation changed me and I feel less alone to know there are others out there that feel the way i do.

    Always Tired
    You are normal! Post cancer fatigue is normal, and perhaps may be expected. I would hope that with you having been treated in 2000, you are followed up fairly closely, and if so, they should be explaining that to you.

    Family and friends, to be honest and fair, may never understand what we feel. All too often, just as we hope to, they just want us to return to normal following our treatments and prognosis of remission. Unfortunately, that's not the case.

    Hopefully you see someone who specializes in long term survivorship issues. I know it has made a difference for me.

    Paul E (Hodgkoid2003)
  • Crowynrowyn
    Crowynrowyn Member Posts: 3

    Always Tired
    You are normal! Post cancer fatigue is normal, and perhaps may be expected. I would hope that with you having been treated in 2000, you are followed up fairly closely, and if so, they should be explaining that to you.

    Family and friends, to be honest and fair, may never understand what we feel. All too often, just as we hope to, they just want us to return to normal following our treatments and prognosis of remission. Unfortunately, that's not the case.

    Hopefully you see someone who specializes in long term survivorship issues. I know it has made a difference for me.

    Paul E (Hodgkoid2003)

    Always tired
    Thank you all! I thought it was just me! I was diagnosed November 2007 with breast cancer, underwent chemo while I continued to work as a prison guard, right up to the last treatment. When I went back to work I collapsed on the rec yard and was sent home. I had a bilateral mastectomy with 16 lymph nodes removed under my right arm and then the surgeries started every 2 months for reconstruction, with complications. I have one procedure to go. My father passed away 10-30-09 and the funeral was in Mich. and I live in Tx. My son had to take me and I was so tired when we got there I slept for a day and night. I get up to do things and my son (34 yrs. old) gets onto me to rest. He says that all he has to do is look at my face and he can tell how exhausted I am. I try to pace myself and it doesn't seem to help. This is the most negative thing about the cancer. Iwound up retired from Tex. Dept. of Criminal Justice after nearly 15 years at a job I really liked. Because of what I did they couldn't work with me at all. Thank you all for making me feel better. Chemo brain is another thing I thought I would get over and haven't yet. That scares me. I'm 61 years old. The balance thing happens too, I wear tennis shoes, even with dress clothes. To everyone else around me I make jokes and laugh about it all, but inside it does scare me. My oncologist just says it will improve with time.
  • beckyracn
    beckyracn Member Posts: 322

    Always tired
    Thank you all! I thought it was just me! I was diagnosed November 2007 with breast cancer, underwent chemo while I continued to work as a prison guard, right up to the last treatment. When I went back to work I collapsed on the rec yard and was sent home. I had a bilateral mastectomy with 16 lymph nodes removed under my right arm and then the surgeries started every 2 months for reconstruction, with complications. I have one procedure to go. My father passed away 10-30-09 and the funeral was in Mich. and I live in Tx. My son had to take me and I was so tired when we got there I slept for a day and night. I get up to do things and my son (34 yrs. old) gets onto me to rest. He says that all he has to do is look at my face and he can tell how exhausted I am. I try to pace myself and it doesn't seem to help. This is the most negative thing about the cancer. Iwound up retired from Tex. Dept. of Criminal Justice after nearly 15 years at a job I really liked. Because of what I did they couldn't work with me at all. Thank you all for making me feel better. Chemo brain is another thing I thought I would get over and haven't yet. That scares me. I'm 61 years old. The balance thing happens too, I wear tennis shoes, even with dress clothes. To everyone else around me I make jokes and laugh about it all, but inside it does scare me. My oncologist just says it will improve with time.

    crowynrowny,
    Your definitely

    crowynrowny,
    Your definitely not alone out there. I finished treatments Aug. '08 and still deal with the fatigue at times. Good days and bad days. It's gotten much better over time. I also had a real problem with the chemo fog, which has also gotten better. I no longer get lost driving to places that I drove on a daily basis...good thing my vehicle knew the way! I was always a good speller, but the chemo affected that somehow. I went out and purchased a little gadget that fixed that problem:) The chemo damaged my inner ears and vertigo and tinitis were a big problem. The doc gave me a pill for the vertigo that wasn't real helpful...waiting 20 minutes for it to work didn't help when I needed a fix right then. My acupuncturist put me on some herbs that cured that in two weeks time. Don't know what it was, but the episodes are far and few in between now. The brake pedal and floor board of my truck appreciate the discontinued abuse at red lights and stop signs these days! Hang in there...one day at a time!
  • janimil
    janimil Member Posts: 6

    Always tired
    Thank you all! I thought it was just me! I was diagnosed November 2007 with breast cancer, underwent chemo while I continued to work as a prison guard, right up to the last treatment. When I went back to work I collapsed on the rec yard and was sent home. I had a bilateral mastectomy with 16 lymph nodes removed under my right arm and then the surgeries started every 2 months for reconstruction, with complications. I have one procedure to go. My father passed away 10-30-09 and the funeral was in Mich. and I live in Tx. My son had to take me and I was so tired when we got there I slept for a day and night. I get up to do things and my son (34 yrs. old) gets onto me to rest. He says that all he has to do is look at my face and he can tell how exhausted I am. I try to pace myself and it doesn't seem to help. This is the most negative thing about the cancer. Iwound up retired from Tex. Dept. of Criminal Justice after nearly 15 years at a job I really liked. Because of what I did they couldn't work with me at all. Thank you all for making me feel better. Chemo brain is another thing I thought I would get over and haven't yet. That scares me. I'm 61 years old. The balance thing happens too, I wear tennis shoes, even with dress clothes. To everyone else around me I make jokes and laugh about it all, but inside it does scare me. My oncologist just says it will improve with time.

    Me Too
    I had BC in early 2007--surgery, chemo, radiation, and other complications along the way. It sent my body for a real loop, and the fatigue and cognitive issues are persistant. I am on disability, which is something I never thought I would do in my life. But what choice to I have? It is hard dragging myself out of bed in the morning. I sometimes wonder how I can be so tired after I have slept all night. It goes in a roller coaster, and try as I might, I have not found a pattern to it. My "senior moments" from the chemo brain (I guess--what else could they be?) bother me, because I am in my late forties, not nearly a senior yet! I hope and pray someone, somewhere, does some real research on post-treatment effects we deal with. I need answers for my doctors, for the disability poeople, for family and friends, and for myself!
  • northernvalentine
    northernvalentine Member Posts: 1
    janimil said:

    Me Too
    I had BC in early 2007--surgery, chemo, radiation, and other complications along the way. It sent my body for a real loop, and the fatigue and cognitive issues are persistant. I am on disability, which is something I never thought I would do in my life. But what choice to I have? It is hard dragging myself out of bed in the morning. I sometimes wonder how I can be so tired after I have slept all night. It goes in a roller coaster, and try as I might, I have not found a pattern to it. My "senior moments" from the chemo brain (I guess--what else could they be?) bother me, because I am in my late forties, not nearly a senior yet! I hope and pray someone, somewhere, does some real research on post-treatment effects we deal with. I need answers for my doctors, for the disability poeople, for family and friends, and for myself!

    Fatigued
    Hi, I also have long term fatigue 2 years on. I had surgery for breast cancer almost 2 years ago, and have had very poor energy levels ever since, and persistent sore throat which gets worse when I overdo it. I had no chemo or radiation so I don't think its the effect of treatment, other than surgery and of course the cancer itself.

    My GP has diagnosed it as Chronic Fatigue Syndrome, but sadly I know all about that as my husband has it, so while we both have fatigue, our other symptoms are different.

    The best way I've found to manage it is by pacing myself and never over doing it, and by eating a really healthy diet and never drinking alcohol.

    As someone says above its about simplifying life and stripping it back to the basics of what you have to do, and not worrying about trying to do anything more. Its hard if you've been a busy active person before, but ultimately a slower pace of life has its own rewards too.

    It helps to know I'm not alone as my cancer doctors seem to be clueless about the fatigue.
  • kkkelley1
    kkkelley1 Member Posts: 22

    Fatigued
    Hi, I also have long term fatigue 2 years on. I had surgery for breast cancer almost 2 years ago, and have had very poor energy levels ever since, and persistent sore throat which gets worse when I overdo it. I had no chemo or radiation so I don't think its the effect of treatment, other than surgery and of course the cancer itself.

    My GP has diagnosed it as Chronic Fatigue Syndrome, but sadly I know all about that as my husband has it, so while we both have fatigue, our other symptoms are different.

    The best way I've found to manage it is by pacing myself and never over doing it, and by eating a really healthy diet and never drinking alcohol.

    As someone says above its about simplifying life and stripping it back to the basics of what you have to do, and not worrying about trying to do anything more. Its hard if you've been a busy active person before, but ultimately a slower pace of life has its own rewards too.

    It helps to know I'm not alone as my cancer doctors seem to be clueless about the fatigue.

    Fatigue
    I wish some of these topics were talked about in detail before treatment was done. Instead going in visit after visit and feeling like an idiot when your asking or telling your onc whats happening and he's acting like your the only one this is happening to. Then just when you thought you.ve lost it you go searching and find out thousands not hundreds but thousands of post ca trtmnt people are going through the same things.
    It would have saved a lot of the energy i had lost and then spent looking for answers. YES they (whoever they are) are now even documenting article after article about these LEFTOVERS that ca causes. I wish now they would spend all their time searching for ways to help us all combat these horrible leftovers as I like to call it.
    Thank you all for helping me feel un alone.
    Keep fighting and kicking ok grunting and groaning.
    kim
  • nanagrandma
    nanagrandma Member Posts: 40
    kkkelley1 said:

    Fatigue
    I wish some of these topics were talked about in detail before treatment was done. Instead going in visit after visit and feeling like an idiot when your asking or telling your onc whats happening and he's acting like your the only one this is happening to. Then just when you thought you.ve lost it you go searching and find out thousands not hundreds but thousands of post ca trtmnt people are going through the same things.
    It would have saved a lot of the energy i had lost and then spent looking for answers. YES they (whoever they are) are now even documenting article after article about these LEFTOVERS that ca causes. I wish now they would spend all their time searching for ways to help us all combat these horrible leftovers as I like to call it.
    Thank you all for helping me feel un alone.
    Keep fighting and kicking ok grunting and groaning.
    kim

    fatigue
    I to have felt the same way, thought it was just me. I just took a voluntary layoff from work becuase of being so tired all of the time. Glad to know i'm not the only one.
  • LRoz
    LRoz Member Posts: 3
    Hi, I'm six years into
    Hi, I'm six years into remission & I understand what you're going through. I am tired all the time. I had Stage 3B cervical cancer. I had massive radiation treatments, & 4 low dose chemo. My doctors told me you will never get all your strength back, & the fatigue stays with you always to some degree. Some people have it worse than others. I have good days & bad days! It just depends on what I am doing that particular day! Good Luck! Take things one day at a time!
  • jazzy1
    jazzy1 Member Posts: 1,379
    LRoz said:

    Hi, I'm six years into
    Hi, I'm six years into remission & I understand what you're going through. I am tired all the time. I had Stage 3B cervical cancer. I had massive radiation treatments, & 4 low dose chemo. My doctors told me you will never get all your strength back, & the fatigue stays with you always to some degree. Some people have it worse than others. I have good days & bad days! It just depends on what I am doing that particular day! Good Luck! Take things one day at a time!

    Not the only one~
    I've been away from treatments for 8 months and feel the aches and pains. What helps me is forcing myself to move -- walk, lift weights, yoga, elliptical machine. Our bodies are meant to move and just as with arthritis, professionals tell us to move as it helps alleviate the pain.

    Sad to say, but none of my doctors knows much about after affects from the treatments. Thankfully people on this board are up on it and we can all group together and know, we're not alone!!

    Hang in there~
  • kkkelley1
    kkkelley1 Member Posts: 22
    jazzy1 said:

    Not the only one~
    I've been away from treatments for 8 months and feel the aches and pains. What helps me is forcing myself to move -- walk, lift weights, yoga, elliptical machine. Our bodies are meant to move and just as with arthritis, professionals tell us to move as it helps alleviate the pain.

    Sad to say, but none of my doctors knows much about after affects from the treatments. Thankfully people on this board are up on it and we can all group together and know, we're not alone!!

    Hang in there~

    jazzy 1
    You mentioned yoga. I;ve been hearing a lot on the positive side of this. Do you feel that it actually helped you post treatments. With mental alertness and fatigue?
    kim
  • Hondo
    Hondo Member Posts: 6,636 Member
    kkkelley1 said:

    jazzy 1
    You mentioned yoga. I;ve been hearing a lot on the positive side of this. Do you feel that it actually helped you post treatments. With mental alertness and fatigue?
    kim

    Fatigue
    About 8 months after my second treatment for NPC Cancer I found my self so week I could hardly get up, went to the doctor and they check and found my thyroid had stopped working. I am now on Levothyroxine and feeling great just cold all the time.
  • meena1
    meena1 Member Posts: 1,003
    Hondo said:

    Fatigue
    About 8 months after my second treatment for NPC Cancer I found my self so week I could hardly get up, went to the doctor and they check and found my thyroid had stopped working. I am now on Levothyroxine and feeling great just cold all the time.

    I am not alone! I am so
    I am not alone! I am so glad i found this post. I was diagnosed in july 2008 with breast cancer with mets to bones. I finished treatment last May and i am so tired. I used to be very active, did everything. Now just getting out of bed in the morning is terrible. Sigh. i have to work a full time job for the insurance. And i am suffering, i also have chemo brain. I keep mentioning this to my oncologist, and he says your blood work is good. Of course, everyone thinks i am "fine" since i am done my treatment, but i feel like i am spiriling into a deep hole. My supervisor is constantly at me, and my ibs kicks in. It never ends..
  • Homeus12
    Homeus12 Member Posts: 2
    I have had dieticians alter
    I have had dieticians alter my food intake thru the years as the chemo/radiation has done damage internally. With cervical cancer I had a radical hysterectomy in which ALL my female parts were removed.

    This included cutting thru my urethra tubes (what my pee passed thru), radiation, which focused on my lower GI to get rid of any cancerous lymph nodes outside the uterus, causing internal sunburn.

    Result: making absolutely certain I knew where EVERY bathroom was as anything I eat/ate would go thru me like water or give me severe diarhea. Dehydration is a factor in FATIGUE.

    Treatments also affected my mental health due to loss of natural horomones, my vision, hearing loss, taste buds, to name a few causing depression which factors in fatigue. Life as I knew it changed forever.

    I am also a recovering addict/alcoholic (18 yrs) & by the grace of god & support programs I am learning to turn negatives into positives. It's a daily process & I still struggle but life is good:)

    Hang in there!!
  • globleinfosol
    globleinfosol Member Posts: 1
    nice step
    really you take a great step. today its going to be the biggest disease in the world. hope i will also be able to contribute somewhere.
  • jacky_78
    jacky_78 Member Posts: 1

    I am always tired and no one understands!
    I am hodgkins lymphoma survivor. I was diagnosed in 2000. I am only 26 and I feel like I am 86. All my doctors say the same thing... Well you have a hypothyroid so lets check those labs and see if its not your thyroid. Yep, it never is! No doctors seem to have any answers and yet everyone close to me either think I making my fatigue up or they think they have a diagnosis for me. I wish I could make people understand how I feel. I am sooo tired almost all the time and adderall is the only thing that makes me feel like a normal person with a normal energy level. I hate to be a person that depends on a drug but the truth is, I do. Without adderall I wouldn't be able to work, heck I wouldnt be able to get out of my bed because I just feel that tired. But i cant tell this to my family and friends because they cant understand. I dont know how and I dont know why but having cancer/chemo/radiation changed me and I feel less alone to know there are others out there that feel the way i do.

    tired ,,,,,,
    i am 32 i had non hodgkins and finished treatments in 08 when i saw your post it sounds just like me i say that i feel 80 everyday they arent giving me anything for the fatigue and i already had my hours cut back to 6 at work and im falling asleep my family thinks im crazy and i just cant take this feeling much longer also i never was a big drinker or anything just on occasion and i cant even do that it takes everything out of me and my whole body aches this is terrible and i think these oncologists need to look into the later effects and at least try to help people deal with them