Fatigue, 2 years after chemo

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jfsnh
jfsnh Member Posts: 39
edited June 2014 in Mental Health: Because Cancer Doesn't Just Affect Your Breasts

It has been 2 years since I finished chemo, and radiation.  Since then I left my job, returned to school full time (at age 52), left my husband and moved.  So, I was tired but I soldiered on. I graduated #1 in my class, passed my boards, and last week started my new career.

 About a month ago, fatigue just decended on me like a heavy weight.  I see a therapist for PTSD and depression, but neither of us think this is related to my mental health.  I can sleep 14-16 hours a day, and still feel exhausted.  I have trouble driving even an hour--I start to have trouble keeping my eyes open.  At work, I function (probably on adrenalin) but the moment I get home I collapse.

This fatigue is worse then how I felt during chemo. I can not express how deep and debilitating it is.  I don't know if it started now because I finally stopped the frantic pace I was on, if there is a new physical problem (I have had several infections that may mean my immune system is not up to par), a side effect of Tamoxifen (started Tamoxifen 1 month before all this, I could not toletate the AIs--severe depression from Femara), or just a lingering chemo issue.  But exhausted does not begin to describe how I feel.

Has anyone else experienced this?  Ideas on what to do?  Don't say exercise--I walk/run 3-5 miles a day at work, and swim on the other days--I get exercise.  But work and the household essentials are all that (barely) get done.  My first priority is energy for work, but there is NOTHING left after that.

I am going to see my PCP for a full physical next week, and my oncologist in Aug.  But I would like the input of other survivors.  Thanks in advance, Jody

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  • pabbie
    pabbie Member Posts: 370
    edited July 2009

    Hi-I tried to figure out for years after my 1st cancer in 1999 why I was feeling so fatigued. I was only able to work and that was it. My husband had to pick up alot of the chores. My white blood count always remained moderately low but my PCP couldn't figure it out so she referred me to a psychiatrist. I then started taking Celexa & HRT for menopause symptoms. The psych was also thinking about putting me on Phenagran? (a drug for narcolepsy) I felt a little bit better but I was always having to conserve my energy. I never got too close to people because I thought they would drain my limited energy and I could only plan 1 activity on the weekend.

    Sorry I'm not much help but I know how you feel. I don't think there is much info. or validation for long-term fatigue after cancer treatment at least not with my onc at the time. Please let me know what you come up with. Take care.

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  • makingway
    makingway Member Posts: 799
    edited July 2009

    Check out the side effects for Tamoxifen. I think it has every possible thing you can think of.

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  • jfsnh
    jfsnh Member Posts: 39
    edited July 2009

    Thanks pabbi, it is good to know there are others in the same boat.  I just want to feel well again.  So far the only advice I have gotten (from my therapist) is to go to work, and just rest the remainder of the time, or at least not to schedule myself up, use that time to recover.

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  • jfsnh
    jfsnh Member Posts: 39
    edited July 2009

    Makingway,

    Thanks.  I know it could be the tamoxifen, but I was on it for a year before without this much fatigue.  Since the AI's cause so severe side effects for me, Tamoxifen is really my only choice, and I don't want to go without an estrogen inhibiter--I had 4 lymph nodes and have had above normal tumor markers.

    Jody

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  • dee1961
    dee1961 Member Posts: 1,672
    edited July 2009

    Jody,

    This is just a thought but do you have any muscle or joint type pain? It could be fybromyalgia or chronic fatigue syndrome. I think both are auto immune disorders and cause severe fatigue. Maybe ask your doctor when you go. Good luck to you and I hope you feel better soon :)

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  • lynnea
    lynnea Member Posts: 226
    edited July 2009

    Jody when you see your primary care doc ask about being tested for hypothyroidism. Many women in their early 50's suffer from this, as do I. Treatment is hormone replacement. Like Dee mentioned, hypothyroidism can be an autoimmune condition also. The tests you need are T4 and TSH. If your TSH is elevated, then have blood tested for thyroid peroxidase antibodies and thyroglobulin antibodies. The "normal" ranges in the US for TSH are higher than they should be. Any levels higher than 3.0 could indicate hypothyroidism. There is a major problem in the US with many women being undiagnosed. Your fatigue may have nothing to do with chemo, especially since it seems you were doing well afterwards.and the fatigue is a recent development. Some other symptoms of hypothyroidism are dry skin, hair falling out, muscle cramps in legs, and weight gain.

    Hope you find the source and then some relief, good luck. Lynne

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  • rosesinwinter
    rosesinwinter Member Posts: 70
    edited July 2009

    Hi Jody-

    I feel so bad for you struggling through all of this!  I am almost 2 years post-diagnosis and 15 months post-chemo.  And it appears that we have many of the same issues- I am separated from my husband right now and just increased my work hours to full-time. During this whole process, I have found that I am very sensitive to medications, of all kinds. Had reactions to chemotherapy, CT contrast dye, antibiotics. I have been on Tamoxifen since last June but also started on Neurontin at the same time for peripheral neuropathy caused by taxol. From June until this May, I would just start crying for almost no reason and couldn't stop. I weaned myself off the Neurontin because it has psych side-effects and it wasn't helping much.  But the crying still was a problem. So I started on Lexapro in May - 10 mg. That was working really well but my psych decided to increase it to the more customary 15-20 mg/day.  I was SO exhausted - wanted to sleep all of the time and hit the snooze alarm several times each morning. Didn't care about any of my hobbies or doing stuff with my daughters. I went back to the psych and insisted on going back down to 10 mg/day of Lexapro...and I take 5 mg of Ambien nightly for sleep. I regained all of my energy again and the crying is manageable now. I know that my family MD wanted to try Lyrica for the neuropathy but I am uncomfortable mixing too many medications at one time that work on the neuro/psych system.  Things are good now - even though the neuropathy can be a little annoying sometimes. I think that the Tamoxifen may have helped to kick off the depression, along with other stress factors but I am able to manage it with the Lexapro.  Hope this helps! 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    The chemo caused me some cardiology problems.  Have you seen a cardiologist? I was extremely exhausted. My cardiologist had me on Crestor. When I went to get my port removed the nurse told me about COQ-10. She said the Crestor made her hungry and tired.

    It is very expensive (COQ-10)....and I am not saying you should take it without consulting one of your doctors. It did give me a boost and my bloodwork came back better than prior to BC. My cardiologist supports my taking it.

    I am on Tamoxifen, Metoprolol, Effexor and Xanax. I only take .5 xanax and that's if I can't sleep.

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  • jfsnh
    jfsnh Member Posts: 39
    edited August 2009

    Dee 1961,

    I do know that chronic fatigue could be the problem, but that is really a diagnosis of exclusion.  Hopefully I will find a cause that can be remedied, but will keep this in mind. Jody

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  • jfsnh
    jfsnh Member Posts: 39
    edited August 2009

    Lynnea,

    My onc has tested me for hypothyroid several times, since I have a  weight issue.  I have been in the low normal range all my life, and I am still.  Since for me this is "normal" it does not account for the sudden and severe increase in my fatigue.  Thanks for trying!  Jody

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  • jfsnh
    jfsnh Member Posts: 39
    edited August 2009

    Roseinwinter

    You're right--we have a lot in common.  I was dx 3 mo. after you, we have a similar dx but I was not her2neu+.  I have neuropathy from Taxol with pain and numbness in my feet.  I will look into the neurontin--I am taking 600 mg 2x a day plus 900 mg at bedtime.  That could be part of the problem. at the same time I need pain relief--I work on my feet all day as an oncology nurse (inpatient).  Neurontin plus 600mg ibuprophen 3x a day, special shoes and PT have gotten me to where I can do that.  Sill, I only increased 300 mg/day around the time fatigue started.  I had been on 600 3x a day for more then a year.

    Cancer changes everything.  My divorce is going smoothly, and I am in the process of purchasing a condo.  My life is HAPPIER since cancer--I have made important changes I kept putting off before.  Still, I wouldn't wish it on anyone.  Feel free to e-mail and thanks for your help.  Jody

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  • jfsnh
    jfsnh Member Posts: 39
    edited August 2009

    Misspell
    Interesting!  I never thought about the cardiac issue--I am going to ask my oncologist to get that followed up.  I have tried CoQ-10, I was told by an MD that it was good post chemo--but it did not seem to matter, and it is costly.  I'll bring that to my onc also.

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  • jfsnh
    jfsnh Member Posts: 39
    edited August 2009

    Sunflowers,

    I do have the TSH results--will look them up in the morning.  I did not realiswe there was such a spread of what is called "normal."  Will let you know what i find.  Thanks!  Jody

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  • jfsnh
    jfsnh Member Posts: 39
    edited August 2009

    All,

    Thanks so much!  I will check my thyroid test results, and ask about cardiac problems, coQ-10, and side effects of neurontin.  I need to get to the bottom of this--I sleep and work--and not much else.  After surviving 2 yeares of nursing school, I know my energy was better, and can be again.  Thanks for the time and suggestions, and I welcome any more.  It has already been a big help--just knowing how many great people are out there caring for each other.  Jody

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  • sjandtj
    sjandtj Member Posts: 31
    edited September 2009

    I am 3 years out from BC treatment and I feel lousy all the time!  THe fatigue is just terrible.  I have had so many test trying to find out what could be causing it.  Test always come back normal.  I year out of treatment I did found out my thyroid was on the blink so I do take thyroid medication now.  Was so hoping that would be the anwer but I still have the fatigue.  Of course my doctor sent me to counciling think it was just in my mind and that depression was causing the fatigue.  I try to tell them yes I am depressed but only because of the fatigue.

    I have recently moved and went to a new counciler and  she is putting me on welbutron xl and a low dose of retelin to see if that will help my fatigue and help with my concerntration levels.  I will start on these drugs in a couple of days. I will let you all know if this is helping.

    sfj BC Survivor since May 8th 06!!!!

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  • EstherRenee
    EstherRenee Member Posts: 3
    edited February 2011

    @sjandtj...u sound alot like me!!  I am depressed because of this inexplicable fatigue that is disrupting my life.  I just woke up after sleeping MOST of the past 2 1/2 days...thisafter last tx 3 yrs ago.  When I come out of this "coma" I pray to God that it will be the last time it happens.  I take prenatal vitamins, ginko biloba, prozac, mobic (for arthritis) and xanax as needed.  I appreciate not having cancer anymore, I just wish I could stay awake.

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  • Glad2BHere
    Glad2BHere Member Posts: 70
    edited February 2011

    Hi EstherRenee  I am in the same boat.  I am trying to get my life back, but have been constantly sick and tired.  My doctor finally ran tests and it turns out I have mono.  The fatigue and pain and isolation of being home is causing even more depression. I am already on Lexapro and take Zanex to sleep at night.  It is so frustrating, plus I feel everyone at work and my husband are just annoued with me having more medical drama.

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  • ljocef
    ljocef Member Posts: 7
    edited February 2011

    Thank you both for posting, EstherRenee and Glad2BHere.  It has been just over a year since I finished chemo, and I STILL feel extremely fatigued.  I can't work full time yet, only 4 hours a day like 3 days a week.  All of the rest of my time is spent sleeping or resting.  I have very dark circles under my eyes (which I never had before).  Every doctor I've seen said it's probably from the chemo, and 3 months after chemo I had a total hip replacement.  That was something I think was either from chemo or the Neulasta shots.  Every round of chemo and Neulasta I would have severe pain in my left hip and leg, back and upper arms.  After chemo stopped, the pain in my left hip stayed and got worse.  3 months later I was having it replaced.  So, they tell me it was from the double assault of chemo and then hip surgery.  I just can't stand living like this anymore.  I'm only 49 and I feel like I'm 79!  At least now I feel like I'm not alone...or crazy!

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  • Glad2BHere
    Glad2BHere Member Posts: 70
    edited February 2011

    ljcef  That chemo really did a job on us.   It was really hard on me too, but you would think a year and a half after I wouldn't still be having such bad immune issues. I have the dark circles too.  It is just nice to know other people are going through it too-unfortunately. 

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  • suesherratt30
    suesherratt30 Member Posts: 1
    edited February 2011

     Reading your post it could be me, I have experienced everything that you have. To see I am not alone is quite comforting, feel so tired all the time and plenty of aches and pains in my joints. I too have had problems with my lower left back and hip since my first session of chemo. I have had an xray but no scans, after reading what you say I will insist of further investigation although it does scare me. I'm also fed up with the persistent stiffness in neck and shoulder on the side were the breast was removed, its ok when I'm actually physically doing something but when I stop its awful, I too feel like an old woman I'm only 50!!! Some days I feel fine better when the sun is out and its warmer, I hate the winter months and wish my life away until the summer arrives, I also suffer with SAD which I'm trying to control with some therapy and a lamp. I dont take much in the way of meds for the pain, do you suggest anything. Can't take Diclofenic as it caused problems with my stomach last year and paracetemol doesn't even touch the pain.......so glad I've found this site.....x

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