I have bone mets mainly in spine but also shoulders and small in thighs. I been on Ibrance highest dose and anastrozole for about 13 months. The last few months has seen my fatigue increase and my mobility decrease. I can only walk a block now before I am tired and if I go out shopping I am in bed most of the next day. My mind is active but my body is not. So frustrating. Anyone else been thru this and if so how did u get your energy back if possible? I still work fulltime thankfully from home so I can nap during the day but am tuckered out by the weekends. I Look forward to the help of the brains club!!!
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Kiwikaz
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Hi! Pain and low energy is so challenging to deal with!
I’m on Ibrance and Exemestane. I was on aromasin previously with awful joint pain. I changed my diet to more fruits and veggie and eliminated sugar and flour. I did it out of curiosity and was shocked at my mobility and lots less pain.
I am also getting regular massage and reiki treatments— I think that helps too. I hope you find some solutions that work for you. Best wishes!❤️
I have not really had fatigue with my meds but I do have joint pain in the morning. I have cut back on sugar and have added more fruits and veggies to my diet and have a good amount of energy. I also exercise every day. I just watched a wonderful online series by Chris Wark that promoted a plant based diet as a way to help heal our bodies. He does juicing, eats a big salad twice a day with many veggies in it and does not really eat meat, chicken, fish or other animal products. He also promotes many different types of supplements which I know most oncologists are not really in favor of. Not sure I would want to eliminate all of those sources of protein and just eat fruits and vegetables, but definitely feel there is a value in more fruits and veggies and cutting back on animal proteins. An organization called Blue Zones which features people in different parts of the world who live healthy beyond 100 years old discusses the benefits of a Mediterranean diet, which sounds good to me. I have not been getting massages or reiki but I do remote energy healing sessions that seem to help a lot. I'm glad your massages and reiki are helping you. I feel like any good things we can do for our bodies in addition to the meds make a difference and put us in a bit more control.
Hi Kiwikaz!
I definitely am fatigued...I accomplish only a fraction of what I used to but, thankfully, my responsibilities are also fewer....
I'm not sure you want to go here, but my onc prescribed Ritalin for brain-fog and fatigue. I take it very infrequently, i.e. 4 shots of espresso typically do the trick, but if I have a lot to do and somehow cannot get it done, I do pop a pill and I'm *on fire* for a few hours.
...I certainly have no moralistic concerns about taking a bit of speed, but I figure when I'm fatigued, my body is telling me she wants me to rest, so I try to listen...
Aside from the pills, I'll mention -- not prosthelytizing (sp?) -- that when I switched to a vegan diet my physical energy increased dramatically. Plus exercise helps...somehow activity begets more activity?
I hope you find a solution....We all still have a lot to accomplish!
hi Lynn. interesting that the Ritalin works so well for you....good to know!!! and thanks for the reminder of ritalin. i had asked my onc for script a couple years back. but thinking i only tried them maybe twice? i do remember they made me a bit dizzy. but maybe i didn't give them a fair shot....not allowing my body enough exposure to acclimate? also, i wasn't as desperate for 'a boost' as i am now...lol...so that too is a motivator. hoping i didn't toss them out and can be found in my box of 'retired meds'. will look tomorrow! and if still have, will try them again..this time with a little more resolve (wink). i can always get a new script if need to. i really want to give this another try!
I have been on Ibrance and letrozole for about 5 years. Last summer I had the same problem. I had scans because I was scared the cancer had spread from my spine. It didn't so I went from 125 mg to 100 mg. It made a difference for me. Much better. I read there was no significant difference in treatment stepping down and my doctor said ok. I hope you can find something that works.
Hi 🌹 I am bone Mets only Er/Pr positive. I’m doing this now five years and what I’ve learned is to not be ashamed to rest. Sometimes I just do nothing for a very long time maybe two days in a row. No laundry no nothing no cooking. This cancer that we have takes our energy away. I am on Verzenio faslodex injections and Xgeva injection. I just wanted to let you know that after five years of all the medication all the tired I finally hit remission two weeks ago, although I thought that there was no such thing as remission in stage 4 metastatic breast cancer he use that word. So rest when you can, it’s a journey, but life is a journey whether we have this cancer or not. I always tell everybody why me why not me. Everybody dies of something, who knows if you and I are going to die from this? it could be something else and it could be much later in life. A cure for cancer can happen anything can happen. I live day to day . I rest a lot .
hi Ycats277. thank you for that!!! i am on day #2 of doing absolutely nothing. sitting up in bed...watched a couple movies..checked out this board a few times. that's it! and while my body is loving it, my mind is calling me lazy. and yes, feeling guilty/ashamed.
in my pre-mbc life, i was type A for sure. and very physically active. even my job as an RN in a busy ER was such a crazy, fast pace. if i had a home project to do, i was like a dog with a bone...haha. now i am mostly sedentary (can barely walk or stand more than 2 minutes before i must sit due to severe spine pain). and now....mostly tired. sometimes i wake feeling fatigued. i realize i have stage WTF (a nancy quote💛) mbc but why so tired? i keep thinking there is something wrong with me. that i am not pushing myself enough. and 'becoming lazy' by not trying hard enough. i reflect on the 'old' me and sometimes don't recognize the 'new' me. and then i feel the guilt creep in again. (although i suspect that high dose pain meds have something to do with the fatigue)
anyways....i read your post at the perfect time! thank you for reminding me the cancer can cause extreme fatigue! thank you for sharing that i am not the only one stuck to my bed for 2 days in a row! thank you for saying it is fine to do NOTHING at times!!! i really needed to hear this today.
ps...now i can enjoy the rest of my evening of doing nothing at all. and best of all....guilt free!
and of course, CONGRATS on being in Remission!!! that is GREAT news! very happy for you and let's hope it stays that way! best wishes.
Best advice l can give is lower your lbrance to 75 MG l have been on lbrance almost 5 years been on 75 MG for the past3.5 or 4 years(can't remember) it is just as effective. Drug companies always use higher doses in clinical trials trying to get the largest number of good outcomes - then real world experience of lowering doses because of side effects(neutropenia and quality of life issues would be 2 reasons) we then find out the lower dose is just as effective. As of now l am still progression free. Good luck to you. Wish you the best. ❤🌺❤
I know it seems counter-intuitive, but I found increasing my exercise.. particularly a 30 minute walk/ cycle first thing in the morning improved joint pain and fatigue. Cycling is a good start because it it less weight bearing. I couldnt get up a hill at the beginning, now I am jogging 2k every morning. I still feel some fatigue and joint pain, but much less and mental health/brain fog better.
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