anyone else so fatigued you can barely live your life. sooooo tired. all the time it seems. it takes me a while to wake up in the morning...so sleepy can barely stay awake not long after awakening, despite megadoses of caffeine☕️...lol. I have bone mets and also mets to lymph nodes in left side of neck. I am one month short of 5 years.....on letrozole only for past 5 years. yes, AI only this entire time. the 'heavy lifter' of 'the combo'.....my thoughts. but this fatigue, on top of the pain, is really impacting my quality of life. have felt fatigue before but not like this. and yet I have started no new meds so not a side effect. puzzles me on the cause..
it can be rough at times. wishing for a break in this 'fatigue' pattern...a bit discouraged, I wake up exhausted and fall asleep the same. maybe I need to push myself more??
wishing you all the best, sincerely......💛
carole XO
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I’m in the same boat. I’m on my second line of treatment and I sleep at least ten hours a night, if not more. I never really feel like doing anything and that includes cleaning. I force myself to do things with my family, but there’s no real joy in it even though I’m extremely grateful. Most of the time I’d rather be in bed or in front of the tv doing nothing. It’s very frustrating, like trying to walk through deep mud constantly. I try to push myself and it works some days. But, as my sister says,”You’re body is working so hard trying to fight the disease.” Good luck to you and all of us.
Good morning Nocillo, I know where you’re coming from. I’ve been on this journey 17 years now, Mets for the past 8-1/2 years, I know what fatigue is. But I also know the fatigue you’re experiencing is not normal. I just went through the same thing. I started Afinitor in April and by July I was sleeping about 18 hours a day. Turns out, Afinitor caused inflammation in my lungs which caused less oxygen circulating in my system. Please talk to your oncologist and consider seeing a pulmonologist…it made a world of difference for me. BTW, my oncologist took me off Afinitor immediately but left me on Letrozole and I’ve been well with just Letrozole. Hope this helps a little. Melinda
I just wrote you a reply and then it 'disappeared'. I hate it when that happens😉.
that was a great analogy...'like walking thru deep mud'....I can definitely relate. and coincidentally, my older sister says the same thing about the body working so hard to fight the cancer that there is no energy left for us! I save what energy I have for immediate family only and my closest friend. but even they know there is a 50/50 shot that I will cancel last minute. but even a short visit leaves me wiped out for the remainder of the day and the following day as well. like you, I try to enjoy. but my body is mostly calling for my bed. sorry to hear you are going through the same. I emphasize....
I have the same fatigue and have to decide if I will go to bed or some activity. I am on 100mgs. of 'Verzenio twice a day along with 5mgs. of Tamoxifen twice a day. It seems to work but I took the summer off testing. Now I have an appointment on Sept. 20 so ill see then how it working. Last scan in May said I was stable. Hurray.
sorry you are feeling the same. this fatigue is so hard to deal with and yet try to live your life at same time. let's hope your upcoming appointment shows you to still be 'stable'🤞.
thanks for your reply. interestingly, my oncologist of 5 years retired on July 1st. my cancer center is small and apparently not that organized. I still have not been 'assigned' a new onc although I finally have an appt on sep 26th, but with whom, I am not sure. I definitely requested a specific doc but time will tell🤞. so I am a few months behind on scans and blood work. good idea on having all my blood levels checked! maybe there is 'something' that is fixable after all. hope so. I am finding it really difficult to live this way. yikes!
hi mudakurag. I used to be on a three month schedule as well. however, my oncologist retired on July 1st and don't even know who my new onc is yet....they are not well organized at my small cancer center. and last time I saw her she did not order scans or blood work. so I am definitely behind schedule. I see Dr. ??? on sept 26th and hoping to have both scans and blood work ordered. I will insist. maybe I am anemic on top of the cancer. thank you for your suggestion.
I find fatigue one of THE biggest challenges of this journey and I’m only 1.5 years in! There was a time I would fall asleep on the couch at 8 pm and could never finish a movie I had started. (My boyfriend would pause it and we watch the second half the next day, 🤣 ).
I started taking vitamin B12
I started juicing vegtables at drank this at least twice a day!! Tried to eat as many vegtables and fruits as I could muster! I would even save the juice from my steamed vegetables and use that in my vegtables juice!
I started walking 30 minutes a day, no excuse! (Believe it or not, that increased my energy a lot)
I started meditation, which left me feeling not only peaceful but also invigorated and inspired!!
I do 5 min of QiGong or Tai Chi which is simply moving energy around and feels great!
I do some deep breath work and after take a cold shower. (I do it the wimpy way, from hot to cold)! It’s impossible NOT to feel ALIVE and totally rejuvenated after that!
I don’t do this all at once, just baby steps!! I also rest plenty when needed. Yesterday I had a 2 hour nap because I felt my body needed it!
Losing 20 pounds has helped me increase my energy greatly as well! I was totally committed. Focused. Knew why I wanted to do this more than anything in the world!!
Sun Shine. Thanks for your list. I’m sure everything you do helps I don’t do your list but I find exercise really helps me. For me, there is nothing worse than fatigue. It takes over your life. I love hearing all suggestions to combat fatigue.
hi Miriam. good that you can do all that. I am further along in my journey. back at 1.5 years...I could do all that too. in fact, I used to be an avid runner. I now have extremely limited mobility, can walk only 30 to 40 feet at present. I am unable to shower on my own. I love veggies and eat a lot of them but not looking to juice them. personal preference. but those are technicalities. this new increased fatigue started a few months ago. I wake up exhausted. mid day I am exhausted. dinner time I am exhausted. I think you get the point😉. maybe I do need my blood levels checked? or maybe the cancer itself is just totally zapping my energy? I was already discouraged by lack of mobility but this increase in fatigue is overwhelming.
From all the most successful stories I have studied, read and heard, it’s OVERDOSING on nutrition, so I do both! You couldn’t possibly eat that many greens in one day! I always felt a bit guilty about getting sick because I have always hated vegtables 🤣
I also have been feeling bad for many years that I still smoke! That’s next on my list to tackle for once and for all!
That is my biggest fear in this journey! Doing really great for many years and then very quickly it goes downhill and it may be over!
I begged my onc to go even down on my meds because I agree with you that life feeling that tired is not much of a life when you wake up and all you want to do is go back to bed!
Yesss! Of course cancer takes most of our energy!! By sleeping we heal. Plus I’ve also had Crohn’s disease for over 30 years. With our immune systems so suppressed and compromised due to all the meds is it a wonder?
What caused your immobility? Your bones hurting? Mine is my spine and ribs. Where are yours?
Ugggggh, wouldn’t it be great if we just had a magic fu…g wand?
mine has been a gradual decline. bottom line, the cancer ate away at two of my vertebrae and my spine is literally collapsing and can not hold me up except for very short period of time. I am so hunched over....does a number on my self-esteem. I used to take pride in my appearance. I have no extra weight to lose. some days all I can manage is to brush my teeth....but need to sit while doing🙄. pain is another huge issue. the trifecta ......immobility, pain and fatigue. yikes! this mbc is such a challenge. I try my best to keep afloat. but some days I feel like I am going under. I know we all have our crosses to bare. wishing you the best. and yes, a magic wand would be amazing for us all. XO
Jesus! That’s what happened to my best friend of 35 years! She just had bone cancer not breast cancer. I couldn’t believe I ended up the same as her!
The only good thing about her passing at the end was that too much calcium ended up in her blood and she lost her mind a bit. She even forgot she smoked 🤣
She had the best pallative care at home and plenty of pain meds to keep her content although that was a huge struggle to get that right!!
Yes of course, if you were a runner (!!) (which I was never good at or wanted to do!) of course it would greatly effect your self esteem and you are so pretty!!!
It’s pretty hard to keep upbeat and positive in that situation but you are trying really hard! Do you have some help around I hope??
thank you for the kind words. and sorry about your friend...nice that she had such great care. and yes, I do have a lot of help....my two sisters and my two adult daughters. and I have a sweet deal with my roommate.....mostly does all the cleaning, laundry, cooking/dishes and yard upkeep in exchange for reduced rent👍. we keep adding add'l chores and I keep reducing the rent.....soon I will charge no rent at all...lol. but honestly, it is still worth it for all that is done for me that I can no longer do. hope the roommate sticks around.....I would have a very hard time living on my own.....despite liking my independence. XO
Just reading this today and your post struck home with me. I also at the beginning felt almost normal (lungs, spine and now liver). I was on the Verzenio and falsodex for three and a half years at the lowest dose of Verzenio 50 mg. Now that it spread to my liver, she changed my treatment plan to Tamifoxen and afinitor.
Next scan (after 2 months) showed the tumors were still growing in my liver. So bye to that and now she gave me Xeloda. I took the first dose (4 pills at 500 mg.) and within an hour BOOM, the fatigue that I had not felt for years. She told me I could try cutting my dose in 1/2.
Two hours in bed just staring at the ceiling in tears. I had forgotten how bad that fatigue is and thought I am not going back to this. Then when I got out of bed, my arms and leg muscles started spasming or something and it hurt. After 1/2 hour I felt normal again and knew I was not continuing with this drug.
I am not continuing with Xeloda. For me it's about quality of life. But I also do not have children or grandchildren so it was a much easier decision for me.
I hear you kearnan. quality of life is my priority as well. otherwise, what is the point. mbc is a rough disease. we do our best. my empathy to you and to all. ♥️
hi sounds to me like we are maybe sharing the same canoe / attempting to lol . I have just had some blood levels checked . My calcium levels are causing some issues. In the process of dealing with High calcium dehydration. It has been a tough week . I am prosuring this further.
yes, the canoe is tippy...trying not to capsize...lol. sorry you are dealing with calcium issues. lets hope you get some relief from fatigue when they get that under control🤞. I am thinking I need to get my blood labs checked as well.
glad to read your post.I ve been on Letrozole and Ibrance for 4 years.Fatigue has been constant in that Im very tired most days and can fall asleep almost anytime,anywhere.
I always wonder if its just me or the medication or the Cancer. I have a pluaral effusion and possible bone mets,but they can never be sure I have bone mets or just healing bones or previous pre cancer back problems. I also have Diabetes and now, Sciatica ,so I take lots of meds. So often I feel tired and its an effoert to do anything.Some days I feel energetic but even then,I get tired very quickly.I keep telling myself Im going to do more and get more exercise but then Im often too tired to do so.My Onc doesnt react to my fatigue at all.
Thanks for the opportunity to rant.I do hope your fatigue improves.
you do not listen to, nor believe, a word that your oncologist says regarding all other subject matters...deservedly so. so why do you choose to believe this statement from her? it is nonsense. no doctor should give you an expiration date....unless perhaps you are bed bound, in a coma, and your organs are shutting down...only then is death imminent. no one has a crystal ball. please try to disregard her inappropriate 'guess'. that is what it is. (my thoughts)
the million dollar question re fatigue....is it the meds or the cancer itself?? inquiring minds (all of us) would like to know! I know my oncologist was not impressed either. at my last appt with her in June.....I mentioned how 'tired' I am all the time and she answered 'I'm not surprised'. so maybe this is to be expected and the oncologists already know that. but why the secret? why not just tell us upfront what to expect. I prefer to know what I am dealing with.
thanks for the reply and feel free to express yourself anytime. that's what we are here for. and btw....74 not old😉
This is now my third week without any medication targeted at my cancer. (Except my one attempt at Xeloda). I feel almost normal again, not tired and finally, finally my sense of taste came back. The cancer is in my lungs, spine and now my liver, where it seems to be growing faster.
So for me, with my circumstances, I think it was the meds. Since there was a delay after I stopped the Tamoxifen and afinitor and before I received the Xeloda bc of a billing issue, it was like 9 days with no meds.
I forgot how good it felt to almost feel normal. I have decided, for myself, that I am done with harsh meds and not willing to lose the time I have left by feeling so fatigued, etc.
My onco was not even aware of how Xeloda had to be taken. When I was telling her, and she said "Oh, are you getting your information from the forum board?" (LOL) I said yes I do bc these ladies have been on the drug or medication. I also told her that I read the pamphlet that came with the medication. She then got on her cell phone and googled to see if the side effects I mentioned came up.
That is when I got annoyed and said Oh, you get annoyed that I go on this forum board bc you tell me everybody is different (DUH, like I am not aware of that), but then you use your cell phone to google the side effects of Xeloda!!!!!!!!!!
I think for me it is the cancer itself. I have not changed meds in the past 5 years so it must be the cancer? although the dose of my pain meds (MS and Oxy) has increased over time? so maybe it is a combo? so hard to know for sure. and I could be anemic....time will tell. but I am definitely struggling with this fatigue. my wheelchair use has progressed a lot. I have learned to propel it by myself.....I too have no significant other.....so being as independent as possible is critical. the bonus is that I will re-build some of my upper body strength.
Carole. I am so with you. Sometimes I think...really. I only get about 4 hours out of every day. Is this life. Then I think... Yes. It is. But I hear you loud and clear.
nice to hear from you. but sorry to hear that you are feeling such profound fatigue as well. I too believe that the cancer zaps our energy. but I guess we do the best we can. while I'm not happy to hear that so many others have this same extreme fatigue, it does make me feel better to know that what I am experiencing is 'normal'. well, normal for women like us with mbc.
hope you and that cute little doggie🐶 are doing well💛
Yes. I agree with all that. It's a harsh world we here have to live in. And even though we stay alive longer now because of our wonderful meds, we/our bodies still have to be strong enough to "fight" the cancer that is so very good at sneaking around our bodies and finding other ways to out wit the medications.... The quality of life we have is really/understandably decreased. Don't you think? But I try to make my life as rich as it can be in the window of opportunity of the energy afforded to me. Go well Carole.
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Wisconsin ginseng and Ashwagandha for fatigue?
Afinitor/Everolimus and Tamoxifen is next :(
