Still have the fatigue after 2 years.

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Mary-Lou
Mary-Lou Member Posts: 2,230
edited April 2018 in Stage III Breast Cancer

I still have fatigue after 2 years, seems like now that I'm into chemo-pause it comes more often . Is this happening to you all? How far out from treatment are you?

I know it is the lack of estrogen, but with estrogen receptors  positive ,I can't replace the estrogen.

Is there any other thing I could take. Also does Radiation have anything to do with being tired to the point of having to take a nap after over 2 years?

My family and friends don't understand how bad I feel sometimes and want me to be over with this whole cancer thing. They say I should be checked ....well I had my scans and path reports done in May, all were clear. I don't know what else to tell them, only that I'm just not what I was before breast cancer hit me.

I want the old me too, but it is not happening....

Thanks for the feed back if you have any.

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Comments

  • evieo
    evieo Member Posts: 47
    edited August 2008

    Hi, Mary Lou,

    Except for taking naps, I could have written your message myself.  I finished all treatment at the end of 2007 and I often say "I am not the same as I was before."  I have always had boundless energy and could be on the go morning til night, now I can only do a portion of what I used to. Oh, I walk almost every day, I clean one or two rooms at a time, I cook and wash.....BUT there is a big difference in what I can do now. I think you are right, lack of estrogen probably is the culprit.

    I also have problems thinking straight and remembering stuff. All in all, I can see and feel what this experience has done to me but I still have to be very thankful that I am still here.  I won't ever be who I was again but I struggle to be the best of who I am now. Not everyone can see this struggle so they don't always understand. I am just glad I found this board where others DO understand and I get my support here for all the side effects of bc.

    Hope things move along for you. If you need that nap, then take it! Only you an your body know what a fight this is. God bless you,

    Evie

  • QueenSansaStark
    QueenSansaStark Member Posts: 207
    edited August 2008

    There are a couple of things that can contribute to fatigue in menopausal (or chemopausal) women:

    - Thyroid problems: these are VERY VERY common in women, and chemo has been known to do a number on the thyroid as well (it makes sense, if it can shut down our ovaries, it can shut down our thyroid). Have your doc test you for hypothyroidism. If you are hypothyroid, you can get Synthroid which will make a huge difference in your energy level.

    - Sleep apnea. Progesterone and estrogen protect us before menopause, but afterwards, we are vulnerable, especially those of us who are ER/PR+ and on Tamoxifen or AIs. Do you snore loud enough to warrant comparisons to a freight train or grizzly bear? Does your bed partner tell you that you stop breathing and gasp/snort for breath during the night? Sleep apnea keeps you from getting refreshing sleep at night and you feel sleep-deprived and fatigued during the day. Ask for a sleep test. 

  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited August 2008

    I've been through treatment for a year; less than that for my surgeries, but still. . . And I just today got walloped with the most profound fatigue - so that I could barely see straight. I had great plans to go jet-skiing all afternoon following a morning's (non-vigorous) dragon boat practice. I had a brunch between them, so it was not as though it was non-stop activity!

    Normally this would be no problem. Instead, I came home at noon and realized I could go no further. I ended up napping for an hour and still have been spent all afternoon. What has become of the active woman I used to be? I eat right, try to take care of myself. And I have just nothing in reserve.

    Anyway, Mary-Lou, I can really empathize. hon. I guess I should get some bloodwork done, too. . .

    Lisa  

  • JoyRebecca
    JoyRebecca Member Posts: 787
    edited August 2008

    Boy...I feel like I could have written every one of your comments!! I keep wondering if this is my new normal!?!

    XX

    Joy

  • LittleFlower
    LittleFlower Member Posts: 405
    edited August 2008

    Wow,

    how refreshing to find this thread.  At my last 3 month follow up, Fatigue was my biggest complaint.  I finished treatment at the end of 2007.  i'm thinking i should be feeling better by now!  So when i told my onc's nurse practitioner that this was my biggest problem, she asked me  " are you sleeping in the night?"  ummm my answer was... "yes... and then some"  then she proceeded to tell me that i should exercise more, because she feels tired when she doesn't exercise... yeah that's right, the situations are totally comparable.  This 20 something year old girl is going to compare my fatigue to hers after my body has been through a war!

    Just venting... feels good to let it out.  Seems like no one has an answer as to why we feel so tired!

    LittleFlower

  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008

    Thank you so much gals. Now I feel like a normal BC survivor. I feel guilty for being tired and for not being a bundle of energy. Some say it is because I'm older, I really don't think 52 is all that old. And I don't think my body should feel as if a mack truck hit it either.

    I would be fine if I could just feel tired and lay down with out it becoming such a sign of being lazy in other peoples eyes.

  • bbmom
    bbmom Member Posts: 391
    edited August 2008

    I am right at 2 years since I finsihed my treatments. I am just starting to feel good. I have been exercising every day and this has made a big difference in how I feel. I still have problems with my memory. I can be in the middle of a sentence and forget what I was about to say. There are plenty times to when I know what word I want to use and just can't get it out.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Dearest ML-

    I have been dealing with chronic fatigue since the moment I began chemo (when we met 3 years ago this November!). 

    Now, I have MS also, and that is supposed to be a SE of that as well.  However, I DID NOT suffer from chronic fatigue before cancer came running into my life. 

    There are times now that I could easily fall asleep on command.  I feel so lethargic, and when my little Daniel sometimes wants to play something like "lets go ride bikes, Mommy!" I want to make excuses and talk the poor kid out of it.  I have to remind myself that it isn't his fault Mommy doesn't feel good, and he doesn't deserve to not play just because of my "ailments." 

    The fatigue and pain just keep lingering in my body, and I feel like I went from an active 31 year old woman to about a 90 year old woman trapped inside my body. 

    The fatigue is frustrating, and my poor husband has actually said, "I just want my wife back."  That breaks my heart.  " I want my life back,"  I want to cry out to him.  It isn't his fault, either. 

    I have to force myself to do these things, when all I want to do is just sit. 

    It's hard, isn't it? 

    EDIT TO ADD: about feeling like we look lazy.....I sometimes feel like I have to explain what I accomplished during the day to my husband, and why it isn't as much as either of us liked.  I hate thinking he thinks I'm lazing around the house all day.  I know he isn't really thinking such things, but I feel guilty and sluggish.  Ick. 

  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008

    Thanks so much, this is helping me to know I'm really not the only one Wink

    Cancer really does SUCK, big time.

    Guess you have to be a survivor to really understand , not a club I wanted to join, but one I'm glad to be in with others who understand how I feel.

  • sahalie
    sahalie Member Posts: 2,147
    edited August 2008

    Me too.

    Fatigue is the ball and chain I drag around with me on a daily basis.

    I have tried everything.  It is so nice to know we are in this together. 

    As it turned out I did have hypothyroidism with one gland bullying the other three and causing my calcium levels to get very high.   I had to have surgery a year ago March to have the gland removed.  Didn't help in the least with the fatigue.  It's still here but at least my calcium levels are normal.  I have to take a daily supplement of OS-Cal. 

    I just had one of my six month check ups and had the usual blood work up before the appt. and things all look normal so I have no clue why the monstrous fatigue keeps hanging around. 

    SherriG.  Thank you for what you shared about what your onc told you.  That makes the most sense I've heard through this journey. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    WOW - it's amazing how you think you're the only one dealing with something, and then you find a post you could have written and responses from so many of us!!!!! Even tho' we may not find anything to put us back to our "normal", it is so comforting to know it's not all in your head.

  • pip57
    pip57 Member Posts: 12,401
    edited August 2008

    I am a 1 1/2 years out and just finished everything off with a oomph/hyster.  My body has lost vital parts, axillary nodes, two breasts, two ovaries and uterus.  I have had chemo and rads.  Been through 5 major surgeries.  Some days I can do just about anything but I know it will take 2-3 days to recover.  And I find just sitting and being social will exhaust me.  

    When I take stock of everything I have been through, both mentally and physically, I am surprised that my body is cooperating at all.

  • Boo46
    Boo46 Member Posts: 539
    edited August 2008

    Count me in. I'm 19 months post treatment and still battle fatique every day. I exercise every day and have for months (training for the 3 day). It has not helped my fatique.

    Is this the new normal - I sure hope not but I'm starting to worry it is.

  • althea
    althea Member Posts: 1,595
    edited August 2008

    I wasn't a stage 3, but the title of this post caught my eye from the index.  I went through chemo, surgery, rads in 05.  The fatigue at the end of rads literally made my bones ache.  I reckoned that must be where the phrase 'bone tired' came from.  The bones don't ache like they did, but they still creak more often than not, and I'm tired so very much. 

    I now suspect rads made me hypothyroid.  My TSH levels have been tested 3 times.  First and third were both over 6, second test was around 4.  I'd like to encourage anyone with fatigue to have thyroid levels checked and to make sure your doctors are up to date.  Mine aren't, and they are using the 'normal'  range that was revised six years ago.  The OLD normal was .35 to 5.5.  Now it's .3 to 3.0, plus, an additional test called the free-T4 is recommended for basic screening.  Documentation to back this up is found at aace.com, the American Association of Clinical Endocrinologists site.  

    Signs of hypothryoidism include fatigue, low grade depression, poor stamina, low energy, hard stools, high cholesterol, brain fog, digestive problems, and trouble losing weight.  That's just MY list.  Additionally, itchy dry skin is a common symptom, and thinning hair,  and eyebrown especially sparse on the outer third of their normal span. 

    I'm now in the process of finding yet another primary care provider.  In the meantime, I'm getting some relief by following wisdom from alternative medicine.  More specifically, I seem to have an iodine deficiency.  An easy indicator is to swab some iodine solution on your upper arm or thigh.  A 2" circle should still be visible 8 hours later if you have enough iodine.  My skin drinks it up like a sponge.  I've been feeling markedly better since increase iodine intake, and apparently I still have a ways to go.  

    It just makes me so mad that doctors just seem to shrug their shoulders when I complain about fatigue.  My onc does this and as a consolation offers me effexor for hot flashes.  I can suck up the hot flashes.  It's the fatigue I want gone.  He could have at least coached me on the topic of thyroid, and he said NOTHING.  Issues concerning thyroid seems to be the ugly stepchildren.  No one seems interested in claiming it.  That's my experience anyway, and I hope my information can shorten somebody's road to relief.  

    Editing to add:  most women feel their best when TSH test results are around 1.0.  My latest TSH was 4.027 in Feb, and my pcp pronounced my thyroid to be FINE.  Doesn't know, and doesn't want to know standards changed in 2002.   

  • sahalie
    sahalie Member Posts: 2,147
    edited August 2008

    My hypothyroidism symptoms were extreme fatigue and to the moon high levels of calcium found with my blood tests.

    There is also HyPERthyroidism that is dealt with by medication.

    HyPOthyroidism was one of my four glands was enlarged and sucking the energy right out of me.

    I do feel a difference since the surgery March 2007 but I am still fatigued.

    You can find excellent information about both from your doctors.  Mine sent me immediately to the correct doctor who in turn arranged for the surgery immediately.  I stayed one night and was home the next day by 1PM.   You can't see any scar in my neck.

    Good luck everyone.

  • Gitane
    Gitane Member Posts: 1,885
    edited August 2008

    I have been feeling very fatigued, too.  I'm three years out from my diagnosis and still need tons of sleep and lack energy.  I will admit, though, that I could exercise more than I am doing now.   I have been blaming it (fatigue) on the battering the surgeries and treatments have caused to my body and the Femara.  Frankly, I don't expect it to get any better than this if it hasn't done so by now.  My onc acts like it's no big deal.  I am so glad to be alive, the fatigue is something I will adjust to. The thyroid information is interesting, though, I'll look into it.  Thanks!

  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008

    Althea ~ That was some really good info. I will talk to my doctor, in fact I believe I will take this post to him, I will never remember all this. Thanks to all for your input.

    And it really doesn't matter if you are stage three. All of us are in this together.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Mary-Lou:  I think the hardest thing for me to understand through this whole journey is the fatigue that Im feeling 3 years post treatment.  Some days are good and some days are very hard.  I understand what you are saying about wanting your old self back.  I keep looking for me - and at this point, I think I need to get used to the new me - which Im not liking too much.

    I wish my problem with fatigue was an easy fix.  With Hypothyroidism - once diagnosed you can take a pill and get your levels back to normal.  Hyperthyroidism is much harder and the treatment isnt quite that easy.

    Anyways, know that you are not alone. 

  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008
    I will have to ask my ONC if the test have been done on me also. I'm never sure what is being done, only that I am NED. I love that word, but still look over my shoulder all the time.
  • sahalie
    sahalie Member Posts: 2,147
    edited August 2008

    Please ask and discuss with your doctors about thyroid issues etc.

    Some of us that have posted have first hand experience with Hypo and Hyper Thyroidism and others have not.

    Best to go over this with your doctor.  A simple blood test will give the results if you have an issue with either one.

    Best of luck to you.

    Fatigue is caused by many things.  The BC and Chemo is at the top of the list but also weight

    and unknown issues can be the culprit. 

    Hope these give some insight.

    Hypothyroidism

    *

    Hyperthyroidism

  • slcleveland
    slcleveland Member Posts: 3
    edited August 2008

    I agree with "evieo" in that I still have all those effects after being out of chemo since November 2007.  I still take naps, but only occasionally because if I do, I have more trouble going to sleep at night and will stay awake for hours.  I am stage IIIB, triple negative which is unusual, in itself, and if I've learned anything, it's that anything can be a "normal" reaction for me.  Everyone's body is different, so you just have to "go with it" and find your new normal!

  • Maire67
    Maire67 Member Posts: 768
    edited July 2010
  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Today - was a perfect example of fatigue.  It was hot, humid and I had to make 12 stops.  In air conditioning, out to the heat.  By time I got home I was so tired I took a nap. 

    My PCP checks my thyroid every 6 months.  Always has been normal.  I really blame my fatigue on the treatments we have gone through with breast cancer.  Chemo really took a toll on me.

    Now try explaining this fatigue to someone who doesnt have bc!

  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008
  • LynnInCalif
    LynnInCalif Member Posts: 61
    edited August 2008

    I sought a pharmaceutical when I literally slept in for work several days in a row.   And I didn't do chemo.  This fatigue had to go as it was interfering with my life; I needed things done and no one but me could do them.  Namely, work but also clean the house, maintain car, yard, yada yada yada, I even managed to forget to pay the water bill for 3 months.  Too darn tired to even think about that mundane everyday stuff.  Let me watch a movie, please...Alas, not an option.  So bring on the drugs.

    Provigil which is keeping my brain from that sleepy drowsy feeling and the great part is I don't feel drugged.  I also take Prozac with it.  High BP is a contraindication.  It is Rx'ed to MS patients, night shift workers and those with sleep apnea or sleeping disorders.  Very expensive, did i mention that?  about 230 for a month's supply.   Am even knocking off a few lbs as I am moving around the house more.   This is a CNS stimulant.  Food is still appealing and there is no dry mouth like diet pills of the past. 

    I agree it is due to lack of estrogen.  After Femara for just a month, it occurred to me that really old folks move slow in part because they don't have energy to move any faster than that.  That is something to look forward to ::gulp::

  • WandaG
    WandaG Member Posts: 27
    edited August 2008

    It is so good to know you're not alone. I'm a stage IIIb finished chemo in Feb 06 and rads in May 06.  Sometimes the fatigue is overwhelming.  One day I had to put my car in park at a red light so that I didn't have to keep my foot on the brake. After all the treatments I became diabetic then underactive thyroid. Now I've lost weight, 38 pounds, which I'm not complaining about since I ate everything that was not nailed down during chemo.  After blood work now I'm anemic and on iron and B12 shots. Sometimes I get weak and tired to the point that I shake.My doctors have been wonderful to check everything out, but I get so tired to doctor appointments.   I know people that have never made the journey that we have cannot understand how we feel.  Everyone comments on how good I now look at a size 6 and with hair, but little do they know how bad I feel at times. People think that once the treatment is finished you should be normal again, but I wonder what normal is.  Sometimes I think the only normal is a setting on the washing machine. But I'm thankful for each day.

  • WandaG
    WandaG Member Posts: 27
    edited August 2008

    It is so good to know you're not alone. I'm a stage IIIb finished chemo in Feb 06 and rads in May 06.  Sometimes the fatigue is overwhelming.  One day I had to put my car in park at a red light so that I didn't have to keep my foot on the brake. After all the treatments I became diabetic then underactive thyroid. Now I've lost weight, 38 pounds, which I'm not complaining about since I ate everything that was not nailed down during chemo.  After blood work now I'm anemic and on iron and B12 shots. Sometimes I get weak and tired to the point that I shake.My doctors have been wonderful to check everything out, but I get so tired to doctor appointments.   I know people that have never made the journey that we have cannot understand how we feel.  Everyone comments on how good I now look at a size 6 and with hair, but little do they know how bad I feel at times. People think that once the treatment is finished you should be normal again, but I wonder what normal is.  Sometimes I think the only normal is a setting on the washing machine. But I'm thankful for each day.

  • pip57
    pip57 Member Posts: 12,401
    edited August 2008

    Wanda, 

    Your comment about shaking makes me wonder if you are hypoglycemic.  I went through that for almost a year after chemo. I would start to feel weak, then shake and feel ill.  I carried a candy in my purse for a quick fix, and mini wheats if I would start to go down when I was out.  The mini wheats were perfect as they had just enough sugar to give the brain a super boost and carbs to maintain.  If your doc suggests testing for this be aware that the medical community no longer considers the test results to be accurate, according to my doc. 

  • Ihopeg
    Ihopeg Member Posts: 399
    edited August 2008

      I finished treatment July last year, and the fatigue is one thing, but the aches and pain are another. I have found myself pulling over into a parking lot to take a quick nap, so that I didn't fall asleep at the wheel. The fatigue comes and goes, but the foot, leg hip pain is bad after sitting for awhile. My new ache is rib pain on my mastectomy side. I am not sure why a year and a half after surgery I am having this pain. I guess this is the new normal.... Atleast I am alive.

  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008

    Surprised I can't believe all the stories, this makes

    me feel so much better. I'm not alone in this.

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