Anyone have problems with fatigue prior to diagnosis?

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited June 2013

    Hello Cfdr

    Hope you will find that in the fullness of time that your fatigue decreases.

    I was absolutely exhausted for six months or so before I was diagnosed with breast cancer - and I've been on B12 for pernicious anaemia for 18 years...

    My fatigue came and went but came on most days during chemo and lasted for two hours and then disappeared.

    I finished chemo in August 2012 and by May 2013 my fatigue had practically gone. It occasionally rears its head for an hour or two and then disappears again. My onc just told me to rest when it occurred.

    It's very unsettling as health appears to be back but then goes off again.

    Hope you get some relief soon.

    Best wishes

    Alice

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  • cfdr
    cfdr Member Posts: 549
    edited June 2013

    I have not been so lucky. I am 18 months post-chemo and still unable to work full time due to fatigue. There are days, still, where it is almost as bad as it was during active treatment. A vigorous hike can set me back a month. I'm seeing my doctor tomorrow about doubling the frequency of my B12 shots and getting a prescription for either ritalin or modafinil.

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  • intheclub
    intheclub Member Posts: 46
    edited July 2013

    Yes, I definitely was fatiqued 6 months at least prior to my surgery, nearly fell asleep driving home from work, something I have never ever had a problem with, I too had blood tests and all clear, then I was diagnosed with lobular and left mastectomy.  Scarily I still feel very fatiqued at times, but hoping this is the hormone treatmen

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  • Outdamnedspot
    Outdamnedspot Member Posts: 297
    edited July 2013

    I was exhausted for at least three months before diagnosis. Most days I was sneaking home from my business to nap on the couch for an hour. I just thought I was working too much and not getting enough sleep at night.

    I remember thinking after I found out I had BC 'that's why I've been so tired'. Feel good most days now though I take melatonin most nights to sleep.

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  • cfdr
    cfdr Member Posts: 549
    edited July 2013

    My PCP is skeptical, but since there is no harm in trying, she has agreed to giving me B12 shots every two weeks. I've also had a second sleep test; despite assurances from two doctors that "sleep apnea only gets worse if you gain weight", my incidents per hour have doubled in 4 years, plus they discovered I have Periodic Limb Movement Disorder. So now I'm awaiting my CPAP machine.

    If the increased B12 and the CPAP don't perk me up, my doctor will prescribe "a whiff of ritalin" for me.

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  • Power-House
    Power-House Member Posts: 13
    edited July 2013

    I am always tired. It's hard to say because I do so much and don't sleep as much as I should. I work out a lot and try to limit my carbs which makes me more tired. I am always trying to get so much done.I work long hrs. If I go to a dr complaining of fatigue the answer would be simple. According to doctors, my cancer took 8 yrs to get to be 1cm. So I doubt that I would feel more fatigued just months before diagnosis. Mmmmm... Did pushing my body and working through the fatigue cause the cancer perhaps? Did the chicken come first, or the egg? One thing is sure, I'm sure the cancer added injury to insult. Lol. Food for thought

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  • chef127
    chef127 Member Posts: 891
    edited July 2013

    I have fatigue for years. Treated it with provigil(modafinil) for years. Its indicated for narcalepsy and night shift work. Ask your dr to rx it for that???? It worked great but when I became disabled  the ins would not cover it, very expensive, over 10$ a pill. My pcp rx'ed aderall(ritilin). It is way cheaper but made me feel goofy when it wore off (blame the drugs.lol) He stopped rxing for me because the med group he now works with doesn't approve. They have no other solution for me. I guess they think getting it illegally is OK.

    Anyway, after my surgery to remove the ca my surgeon said "now that the tumor burden is out you'll feel better". Never happened. but it does happen sometimes. It can cause fatigue.

    I'm now on a herbal tea that I'm hoping helps.

    Hang on and in.




























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  • cfdr
    cfdr Member Posts: 549
    edited July 2013

    I asked my PCP about modafinil, but she doesn't have any experience with it so she was reticent to prescribe it. She has lots of patients (mostly pediatric) on ritalin and feels more comfortable with that. I still have a follow-up appt with the utterly useless neurologist I saw 3 months ago (who asked me what year it was and gave me a printout of info on fatigue I could have gotten off wikipedia). If I'm still feeling bad by then I may ask him for modafinil.

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  • chef127
    chef127 Member Posts: 891
    edited July 2013

    hey cfdr,

    It was my utterly useless neuro that rx'ed the provigil (modifinal) It is non addictive but can be habit forming. If you have pvt ins go for it. The ritilin is addictive I think. There is a world of difference in the two drugs as far as fatigue relief is concerned. My neuro gave me samples of Nuvigil. I didn't like it at all. If you have pvt ins Nuvigil will give you a free 30 day supply and future co-pmts of only 5$ a month.

    I hate the idea of drugs getting me through the day, but the modifinal did work. I have a friend who can fill my rx for cost. Any time now.Good luck with your choice.......xo, maureen

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  • cfdr
    cfdr Member Posts: 549
    edited July 2013

    Sounds like your neuro was not useless at all!

    Ritalin does have the potential to be habit-forming, but there are plenty of people who take it only on an as-needed basis, or take "drug vacations" (e.g., not taking it on weekends) with no problems. Since diagnosis I've been prescribed oxycodone, hydrocodone, and ativan, all of which have addiction potential, and never had a problem taking any of them only as needed.

    My PCP originally suggested wellbutrin, but I'd just spent 6 weeks weaning off lexapro and am wary of getting on anything else that requires weeks to find out if it works and more weeks to get it out of your system. I'm considering antidepressants as the last resort for this, although that seems to be the only solution the oncologists can come up with.

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited July 2013

    Cfdr

    Just a thought but from one person on B12 to another, do you happen to be wheat-intolerant?

    I've been tested for coeliacs but it came back negative but the results letter advised me to avoid wheat if it made me uncomfortable.

    Only have wheat now and again now and have much more energy.

    Guess you would have to ask your docs before cutting out or reducing wheat intake, especially as you are on meds, but is this worth discussing with them?

    Good luck

    Alice

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  • chef127
    chef127 Member Posts: 891
    edited July 2013

    Let me rephrase that. He is not so useless as he is ignorant to MS fatigue. My second meeting w him he rx'd a disease modifying drug which is typical. I asked him to rx the provigil and he said it is not indicated for MS. It is widely used by neuros for MS. He must have researched it and aquired samples of nuvigil and gave me a months supply at my next visit. Nuvigil is similar to provigil. The following month he told me he got me another free months supply but I prefer the modifinil. he did give me a script. I guess he is not an MS 'specialist' and was unaware. I'm sort of educating him. It is the best fatigue fighter I know of, whatever causes it.

    Alicethecat, I would love to give up the wheat, it works for a lot of people. But...I love my bread and pasta, etc. It is a senseable approach. Maybe I will give it a try someday. Ciliac or not. thanx for the idea.

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  • Patti777
    Patti777 Member Posts: 45
    edited July 2013

    I had been going to doctors off and on for over a year complaining about fatigue. I am triple negative stage 1. Still working on doctors visits. Eager to see if fatigue at least slows down. When asking my oncologist if the fatigue could be caused by the cancer he said no. I am not so sure.

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  • cfdr
    cfdr Member Posts: 549
    edited July 2013

    Alicethecat, I have not considered wheat intolerance. My mother was allergic to wheat, but I have never had a negative reaction to it. My digestion is just fine so I'm sure I don't have celiac disease. I've been trying to cut out refined flour, so my wheat consumption is reduced as a result of that. However, my husband has started baking bread, and I know he would be insulted if I suddenly refused to eat it! That said, though, it is certainly worth going without for a while to see if it has an effect.

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  • sonjaloder
    sonjaloder Member Posts: 1
    edited July 2013

    I have been diagnosed with a Stage 3 breast cancer in the last week and I have been tired for the last 6 months.  I was also having night sweats.  I saw two doctors and they thought it might be pre-menopause, thyroid etc.  I had blood tests and chest x-rays with no result except that my immune system was slightly down and fighting something.  I am 41 years old and found a 6mm lump in my breast and then it was picked up. 

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  • chef127
    chef127 Member Posts: 891
    edited July 2013

    When I saw my BS post surgery he did say now that the tumor burden is gone I should start to fell better, less fatigued. Never happened, for me. I guess many are fatigued from the tumor, weakening their immune system. My immune system is kicking ass, always has been normal or slightly above. But the fatigue persists and is holding me back from normal daily activities. I got my modifinal last week, 200mg, and it does help for about 3-5 hours then I crash...........zzzzztime for a nap.

    I'm going to start making a better effort to exclude wheat from my diet. It is the logical approach to the fatigue issue. Pasta bread cookies ETC. If you read ingredients in foods many have a form of gluten in them. I was in the bagel business for years and they are made with hi-gluten flour. I love them.....they gotta go.

    It's a never ending battle.

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  • cfdr
    cfdr Member Posts: 549
    edited July 2013

    Of course, 3 days after I say my digestive system is great I come down with viral gastroenteritis. Worst and longest-lasting case I've ever had. My mom used to call these things the "24 hour virus" but I'm on day 6 and I'm not back to even my low normal yet. Don't know if it's the post-cancer or the pernicious anemia but these things seem to hit me a lot harder than they used to.

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  • chef127
    chef127 Member Posts: 891
    edited July 2013

    cfdr,

    So sorry. I don't even know what it is but any digestive issue for six days, in this heat has to be tough. Are you in this horrible heat wave where you are? I know this unrelenting heat effects me. I don't leave the house much.

    Feel better soon..........xox

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  • cfdr
    cfdr Member Posts: 549
    edited July 2013

    Haven't really been out of the A/C so heat has not been an issue. I live in the South, which, surprisingly, has been cooler than normal lately.

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  • bc101
    bc101 Member Posts: 1,108
    edited April 2014

    Yes, I had profound fatigue about six months before my dx. I knew something was wrong--was exhausted after work and unable to do spring clean-up and gardening. Felt "fuzzy" like my brain was on hold. Had problems at work due to my lack of sharpness (still do). I was sick and tired of being sick and tired. So I went to my Dr. and had blood tests to no avail. Unfortunately, I didn't have a physical at that time and was late with my mammogram, too. Went home with another new RX for depression, then a few weeks later I found the lump.

    I haven't had surgery yet and I'm less than one week into hormonal treatment, but I doubt I'll have any issues with fatigue like those of you on chemo. I'm actually feeling better physically--less tired and have more energy. That may be pyschological effect .... as in now I know what's wrong and can finally take action to fix it. OR maybe because it's summer and I LOVE warm weather, being outside, gardening, swimming. One thing's for sure, ever since I was DX'd with bc, it has made me appreciate the small moments of joy in life. Course, that could change if I get a positive result of my BRCA tests. :/ 

    Good luck to all of you!

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  • cfdr
    cfdr Member Posts: 549
    edited July 2013

    blondie101, congrats on having an oncotype score of 10. That is very good news!

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  • lizinmontreal
    lizinmontreal Member Posts: 46
    edited July 2013

    I was fatigued for months before cancer diagnosis and I developed dark circles under my eyes. I thought the dark circles were due to the fatigue. I also felt a swollen, thick area just under the armpit when lying on that side in bed at night. Then in the morning, I forgot about the uncomfortable thickening feeling so I never mentioned it to my doctor.

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  • wrenn
    wrenn Member Posts: 2,707
    edited August 2013

    I have been exhausted for months and attributed it to thyroid problems since I was being investigated for thyroid cancer. After having half my thyroid removed and receiving a benign report I then thought the remaining side of my thyroid must not be working. I kept being told it was fine.

    i was then diagnosed with breast cancer and have not had any treatment yet (surgery next week) but I have to force myself out for walks every day and could just lie down on the grass I am so tired. 

    I hope the fatigue goes away post op. I'm grateful to have this forum to see that I am not the only one with this experience.

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  • srpj68
    srpj68 Member Posts: 7
    edited July 2014

    Gosh I'm so glad I found this thread after an internet search.  I have just been diagnosed with stage 2 LBC with lymph involvement, but haven't had all the scans yet.

    I have the most crashing fatigue - feels like flu but without the fever, with nothing showing up on blood test results.  I have been convincing myself that I have secondary BC as I could only find info relating to fatigue with chemo or secondary cancer.  This has given be renewed hope - I guess I won't know until the scan results are in though.

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  • cfdr
    cfdr Member Posts: 549
    edited July 2014

    Here is the most thorough resource I've found about persistent cancer-related fatigue.

    http://www.cancer.gov/cancertopics/pdq/supportivecare/fatigue/HealthProfessional/page1/AllPages

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  • Freemanburch
    Freemanburch Member Posts: 1
    edited February 2017

    I was so glad to find this. I had extreme fatigue for close to a year before my diagnosis. I would come home from work at lunch and take naps. Nap after work, had trouble staying awake at work and napped all weekend long! I could sleep sitting up. I went to the doctor because it was so extreme, but all my tests were normal. Last week I had my lumpectomy and returned to work a week after. I worked all the way through lunch before I realized I wasn't tired at all. I never attributed my fatigue to the cancer until they took it out. It is striking compared to what had become my new reality. It's like waking up from a dream. Nice to beback to being me.

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  • Janney03
    Janney03 Member Posts: 6
    edited May 2017

    I am sorry that you had fitique but glad to hear as I am exhausted and was getting really worried.

    I was just diagnosed 2 weeks ago and my surgery is next week. Will be glad when it is all over.

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  • Janney03
    Janney03 Member Posts: 6
    edited June 2017

    I was tired and had burning pain in my breasts before my diagnosis. Although my tumor was very small 6 mm (Invasive Tubular Breast Cancer) it caused a lot if havoc in my body. I had lumpectomy surgery 3 weeks ago and the fatigue is worse and I haven't even went for radiation yet.


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  • Leatherette
    Leatherette Member Posts: 448
    edited June 2017

    I have been fatigued for about a year. Since September, I do a two mile walk almost every day, the first half uphill, and I had been remarking to my husband, "Shouldn't this be getting easier? Every day it feels just the same as when we first started." My tumor is pretty large and deep, and I wonder if it presses on my heart and/or lungs. It certainly feels that way when I am walking. I'm sure the docs would say no if I asked. the tumor will be out Monday, so it will be interesting to see if I feel a change once I recover from the surgery

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  • Imladypeacock3
    Imladypeacock3 Member Posts: 2
    edited June 2017

    yes. It was what made me wonder if I had some form of cancer. I had known someone who was so fatigued she could hardly move through the day let alone work. She was later found to have cancer. Someone else had told me that fatigue is often the first sign of cancer. Like you I was Attributing it to my MS, arthritis or diabetes but this exhaustion was like none other and wasnt relieved with rest. Now Ive been diagnosed with invasive ductal carcinoma triple negative stage 1

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