Fatigue

finallyoverit

Has anyone figured out any way to deal with the constant fatigue? I'm on my 5th round of Ibrance and Femara. Not sure if that's what's causing it or not. I work full time but on the weekend I can't seem to get off the couch. It's almost as frustrating as the progression. Anyone find anything that works? So much to do around the house and not a shread of energy to do any of it..

ShetlandPony

Ibrance fatigue is tough. There is a quality of inertia to it. What about lowering the dose? Or your standards? My standards and expectations around the house are pretty low at this point. I try to let go of the frustration. I'm on a different drug now, but still tired and sometimes I do a game of work 30 minutes then sit 30 minutes. But Ibrance fatigue is particularly difficult in my experience. Congratulations on continuing to work. Can you get volunteer or paid help around the house? My house cleaners keep me from going under. Somebody on these boards was prescribed ritalin, by a palliative care doc, I think.

Nkb

Finally- I would also check your thyroid (TSH) and make sure that you are not anemic. I feel much better on the Ibrance 100 mg than the 125-the fatigue with that was a sort of "can't be bothered, deep fatigue-not too much exercise or too little sleep type) which makes it very hard to power through.

Working full time is very tiring and I like Shetland's ideas for help. I have a house keeper too-even if they just do the bathrooms, kitchen and floors-so helpful.

JFL

Wellbutrin. I take it for chemo-related fatigue. Very good for fatigue related to all these treatments. I also work full time and had no energy before to do anything at night or on the weekends, like you. I felt really guilty about that because I have a toddler. The energy benefit kicks in very quickly. I felt a difference the first day I took it.

Jaylea

Overit, if your labs are not completely in the tank, check causes other than the ibrance. I was pretty fatigued at the 1st cycle, but am on number 4 and energy has returned. Having said that, I'm only working part time. Full time plus house plus family definitely will take a toll. Are you sleeping ok? If not, look for help there as well. Take care and hope you find relief soon.

jensgotthis

I join you in being so so tired. Been on Ibrance and letrozole just over a year and I work full time and am a single mom to an eight year old. Getting enough water helps a bit. I was prescribed adderal to see if it helps but I have not had the guts to try it yet. Lately feel Like I will myself to be active.

lulubee

JFL, can you tell us more about Wellbutrin? Which kind are you on, how many mg per day, etc. How do you feel it is affecting your overall mood? Appetite changes? Sleep?

In the AD category, I have only ever taken Lexapro. I took it for a couple of years after graduating to Stage IV, then I titrated off of it three years ago. I was emotionally a little flat while on it-- it lifted the lows which was a godsend at the time, but also blunted the peaks of joy. And I gained some pounds on it which never came off (although that could have been from the oophorectomy and instapause, zero'd estrogen on AI's, treatment fatigue-- any number of things going on at the time could have contributed to the weight gain, I'm sure).

I've been on treatment for over seven years straight, and golly, I would love to have even a little relief from being so tired all the time. I have wondered about Wellbutrin for fatigue and also for my general wellbeing. Would love to hear your details.

Micmel

Been on ibrance and anastrazole for a year. I believe the fatigue is accumulated each month. IMO I am exhausted everyday. Zero energy. I talked to my palliative care doctor she gave me a small doseage of ritilan 10 mgs. With my choice to take one or two depending on what needs to be done that day. I start off with one and then four hours later take another if need be. It definitely helps me. I don't take it everyday. But when I do. I get things done. When I told my onc how I was feeling. He said ibrance is a fatigue bear, he said that means it's hard at work. I learned to only plan one big thing to take care of a day. Or do several small things with breaks in between! Some days I can't even get out of bed. I am not anemic, and my counts tend to stay even keeled, a little low at times, but never had to stop. Thankful for that. Coming around To scan time. Hope the fatigue improves ladies ! ~M~ My doc would never change my doseage, he's the aggressive onc. Since I am 47 he wants to hit it hard And boy did he ever.!!! Good luck!

JFL

Lulubee, when I was diagnosed with Stage 4 and taking aromasin/faslodex/ibrance, my MO put me on Cymbalta for joint pain as I didn’t want to take narcotics or heavy pain killers. It helped with joint/nerve pain and bone mets pain. When I moved to Xeloda, the Cymbalta made me very drowsy. I switched to Wellbutrin which is known to mildly help with joint/nerve pain, and promotes energy. I have been on it since. I was not overweight to begin with but I did lose a few pounds. It does give me slightly less of an appetite but I generally have always been a big eater, don’t skip meals, etc. If someone were looking to lose weight, this would help significantly move over that impossibity hump. It also increases sex drive and gives me energy to engage in social interactions more than I would have without it. I started on 150mg, then 300mg and landed at the highest dose of 450 (the 450 pill is a branded generic with a different name than Wellbutrin, I will try to remember it). When I was on aromasin/affinitor, the Wellbutrin dose was too high and gave me too much energy but now on Abraxane, it is ideal. If I would have stayed on aromasin/afinitor for more than 3 months, I would have moved down to 150 or 300mg.

finallyoverit

I think I've finally figured out what's causing a lot of the fatigue.. depression and a general "poor me" attitude. While I definitely do think some of it is related to the meds, I think some of it is just me feeling sorry for myself. I think I'm finally finding my way out of the fog.. no secret sure fire method.. just allowing myself to feel what I was feeling and then just getting tired of laying around. Just like years ago when I dealt with this crap, I got to a point when I just moved on and told my body it was going to have to catch up with me.. well, I'm there again. This time is a little more challenging with the bone mets (just not physically able to do some things) but enough is enough..F cancer!

GraceDD

Hi finallyoverit, micmel and others here,

Fatigue... ah yes, omnipresent for me, since chemo 1992. 6-months ago, My CAM ND (Oncology Naturopath) brilliantly Rx'd "Thorne Deproloft-HF", a powerhouse B-vitamin based antidepressant. What a difference! I feel happy, awake, balanced consistent energy for the day's activities. 1 upon waking and 1 more before lunch. Now, after some months, on some days I can just take 1 Deproloft-HF with breakfast.

I also have headaches, which ONC says others on Letrozole do not have. So when I really need energy/no headache to function, I take 1 Exedrin with noon Deproloft-HF, with fabulous results! However, this has caffein, which I really need to avoid to feel consistently better, in the big picture.

This week, I've finally added a 30-minute early afternoon power nap in front of the fireplace...

[All of this means, that I'm trying to wean off of daily vegetable juices; and "coffee enemas" which have ALWAYS done a GREAT job mitigating SE/side effects, of fatigue, brain fog, headaches. However, it takes up most of the day...].

I'm trying to "normalize", to have some time for "quality of life" and socializing! However, mainstream food/restaurants leave me "fatigued and headachy". So GOOD LUCK, All -- Please keep on sharing! We are in this TOGETHER : ) --Love, Diane

jobur

I've been on 125mg dose of Ibrance (with Fas) for over 2 years. I think the fatigue has gotten a little better over time. Although it is counter-intuitive, I've found even small amounts of exercise help. Mainly I've found that I just need to get up and get doing things. Anything at all to get moving. Inertia, as Shetland said, and remembering that which is in motion tends to stay it motion too. It also helps with depression.

I agree with the advice above to check your thyroid and be tested for anemia. If all is ok AND you are getting good sleep (this is hugely important!) one of the drugs mentioned above may be helpful. I have no experience with any of them but Wellbutrin sounds very interesting.

Sending a hug, but you have to get up in order to get it, ha ha!

Gumdoctor

Hello All,

I am newly-dx'd stage IV in Dec '17 so have been slowly but surely finding my way in BCO.

So grateful I found this thread...I too have suffered with severe cancer fatigue before, during and after my original bilateral stage III IDC dx. Unfortunately I had severe fatigue for at least 3 yrs before my original dx and was completely blown off by numerous med professionals...you work too hard was what I heard most often. This lead to at least 3 yrs of failure to dx my original cancer and now here I am at stage IV. One of the biggest components in the mix for me to deal with is anger...

Getting back to the fatigue...after chemo for stage III, the MO said sometimes it takes up to a yr after chemo for the fatigue to subside. Mine never subsided. As mentioned earlier, the anger is ever-present. It is also extremely draining but more recently I have been getting a handle on it.

I just completed first cycle of Fas injections monthly + Ibrance 21/7 regimen. I find the fatigue to be worse than ever.

Before stage IV and Fas/Ibrance, I tried first Adderal then Concerta. Adderal helped alot but I ended up admitted into the hospital for severe chest pain. After numerous cardiac tests, I was cleared of any heart issues and it was purely a bad reaction. Concerta was the next thing. Again it helped alot but I ended up in the ER with BP of 185/115 and pulse 120. I went thru numerous tests again for hypertension and tacchycardia and was put on two different medications. Obviously I no longer take either the Adderal or Concerta and am dealing with the fatigue the best I can. I no longer take anything for HTN or tacchycardia either. It all resolved but took at least 4 months.

In dealing with the fatigue, I have had to reduce my expectations of what I can accomplish. This is still a work in progress for me and the hardest thing in dealing with cancer in general. I have been a go-getter, self-motivated person since I was a child. To have to accept slow, mediocre, average and less from myself is like a prison sentence with no chance of parole. But again, there is a ray of sunshine here...I am learning to become more realistic and see clearly that I must learn to accept this "new normal" as a way to better take care of myself and love myself. I will be healthier and happier and hopefully last longer if and when I can accept what I cannot change and be happy with what I do have and what I can do instead of what I cannot do.

A few things I have found to work for me:

1. Pick a small project (or piece of a project) to do and then pick a reward for getting it done...

This picture is the project I picked 2 wks ago. It was covered up with boxes, papers on the floor, cat fur, etc. I determined to re-claim the space and be able to enjoy it once again. It took 2 hrs of actual work to hang the 2 pictures, move everything out, clean, vacuum (including the stairs right next to this small entryway) and set everything back in its place but this was a very nice result. Being able to see this every time I come home or go up and down the stairs is worth the HARD effort to fight back the fatigue. 2 hrs of work over 6 hrs time was the equation I had to accept.

My reward: Order Keurig K-cups online (I am a tea drinker and tea is a great reward for me any time).

2. Set a timer for 5-10 min (previously I used 15-20 min but have to reduce my expectations most days...) and work on something/anything. Often I have to do this to get the dishes from the sink to the dishwasher. When the timer goes off, I stop and come back to whatever it is later. Sometimes I can re-set the timer for another 5-10 min. Sometimes I have to rest. For me, working on NOT JUDGING myself is the real challenge.

When I can do this without judging myself, I find it works pretty well. I can plug away at things in baby steps and actually accomplish a few things every day.

I hope these thoughts can help someone else too. I look forward to learning from you all and figuring things out more and more each day. I hope you all have a great week and make some progress learning how to deal with your fatigue.

Warmly,

V

finallyoverit

V,

Thank you so much for your reply. I could not stop the tears as I read it. I'm so incredibly grateful for all of you who "get it". I think you hit on something that I struggle with, having grace with myself. I have always had ridiculously high expectations of myself. That coupled with the physical challenges of a spinal fusion and bone meets do not make for a good combination. I'm trying.. my theme for myself in 2018 is grace. One day and one step at a time.

Finally

(I really should think about changing my screen name..it was obviously chosen prior to my stage iv diagnosis)

Gumdoctor

Finally -

Bless your heart. Yes it sounds like you and I have the same worst critic - ourself. I really like your goal for grace for yourself. I SO KNOW how hard it really is...

Something someone guided me thru was, "What would you say to your best friend in this situation?". You will probably agree that it is WAY easier to be gracious and kind to someone else but not ourselves? Well, how would you approach your best friend with these same issues? Once we can answer that question, we can move forward to practice being our own best friend through all these challenges.

Truly, no one knows ourselves better than we do right? I have the most wonderful husband in the universe...and he really "gets it"...and he is unquestionably my best friend. But even he cannot know what this is like for me as well I know what this is like for me. Same for you. You know yourself better than anyone in the universe. So you can figure out better than anyone just what you need in the way of love and support to help you get through this.

I will be here for you just as much as I can because I have felt so alone in this fatigue struggle for many years now. I am so grateful to have found you!!! I hope we can help each other figure it out better so we can enjoy what we've got and the time ahead just as much as possible.

Sending you love and hugs and kisses today XOXOXO!!!

Warmly, V

Gumdoctor

Kicked Fatigue's butt today!!!

- Caught up all laundry and dishes (there was alot of both)

- Deep-cleaned master bathroom

-Sorted and catalogued a bed-sized pile for donation

- Dropped off donations

- Dressed up in slimmer jeans and boots (have not worn these for more than 2 yrs - have been working to get to "Normal" BMI range with 1- 3 lbs to go...)

I am pretty excited. I might be wiped out for the next 3 days though...we will see won't we?

Warmly, V

finallyoverit

Yay! That's so awesome! I'm about to do the same.. was very productive Saturday morning and am getting up now to tackle the rest of my list. Thank you so much for your words and your support. I don't have the words to express my gratitude and appreciation.

Gumdoctor

Finally,

How are you doing? Been thinking about you alot this past week.

Warmly,

V

finallyoverit

Hi, V. Sorry for the delay in my response. I’ve been away from bco for a bit. I just needed a breather to try to establish some sort of normalcy. Kandy’s passing hit me pretty hard. I am still struggling with fatigue and pain but I’m trudging forward. I’m sick and tired of sitting around so I’m forcing myself to tackle some of this to do list. Took me 3 days to clean out a closet, but I did It. I’m sick and tired of this disease and the control it has over just about every aspect of my life. I hope you are doing well.

Gumdoctor

HI. Glad to hear from you.

I posted yesterday but I think I got a phone call and post did not post...

I did not know Kandy because I am too new here. But we can take comfort in knowing her struggle is done. That is about the only consolation we have. That is something to hold onto right?

Congratulations on your closet!!! It is so important that you decided to start it and kept at it until you finished it. Your intention and acting on your intention is the important thing, not how long it took. This is how we can take control of some piece of the C monster. Kick C monster's butt whenever we can!!!

Here for you and to kick C monster's butt with you,

V

DivineMrsM

Gumdoctor, love your entryway table! I am a big fan of this kind of home decor, even having an “entryway" board on Pinterest where I save various well done pictures of decor similar to yours. I agree, it’s a nice way to perk up every time you pass it. I also agree that we must pace ourselves and allow ourselves to work a little at a time to get things done WITH JUDGING ourselves. Oh, yes, that is so important. I have learned to chunk things down in to manageable pieces when tackling many things. Even something like laundry. Getting the basket downstairs is one part. Getting it to the laundry room from there is another part. It still gets done. “Take frequent breaks." is a good mantra.

I saw today is National Napping Day! Let's celebrate by snoozing!

CAROLINE77

As of February 2018, I'm Stage IV NED for 2 years. I'm still on TDM1/Kadcyla and doctor doesn't want me off since I've been responding so well. Tumor in left breast was the size of an apple and it along with other little tumors disappeared after 3 infusions of TDM1/Kadcyla. I am lucky. In January, I changed my infusions from every 3 weeks to every 4 weeks. This was against my doctor's advice, but I think I'm making the right choice--to slowly wean off.

I feel pretty good most days. The main issue now is low energy. Fatigue seems to hit later in the day but today, I've felt it since I woke up. I am more sensitive in general: to the moon cycles, noise, music, lights, dramatic change in temperature. I got a headache that lasted most of a day when the temperature went up by 20 degrees F, from one day to the next. I am learning that I have to guard my energy and use it wisely. I've always been sensitive but post diagnosis & post chemo, I've become more sensitive. I am a HSP - highly sensitive person and found great insight and tips from Elaine Aron's book. I am still coping and would like to hear what others experience and what helps with fatigue, how you deal with it at work.

TarheelMichelle

finallyoverit, and others who knew Kandy, I’ve taken some time away from bco too. I thought those of you who are familiar with Kandy would be happy to hear that herDS FINALLY proposed to his GF a couple of weeks ago. I saw it on FB and it made me smile. I teased him at the visitation that it was one of the things his mom mentioned to me most, that he needed to put a ring on it. :-) I miss Kandy but she hasn’t left my heart.

Gumdoctor

Finally was able to tackle my dining room. It has been a mess for over 2 yrs. Took at least 20 hrs altogether over many weeks. I did not just move the stuff to another room. Instead, I actually found a home for everything, including donation pile.

Working on each room to get to the point of being able to paint each room. This wall color is not my choice but what was here when I bought this house.

Have been doing better in working around the fatigue. Not taking as many naps so this is very encouraging. Continuing to set very realistic expectations about what I can do instead if what I wish I could do.

Hoping for all here that we are able to find some contentment in what we are able to do, in spite of our fatigue.

Warmly, V

finallyoverit

That’s beautiful! So inviting! I actually just found out another possible reason for my fatigue.. hypothyroidism. My last blood work showed a high TSH. My MO wants to recheck next month and if still high, guess who gets another daily pill. Ugh.. the fun never stops.

Gumdoctor

happy to hear there is a treatable cause...

V