Ongoing daily fatigue 2 yrs after active treatment - grateful for ideas on how to overcome it.

[LeoEucalyptus]

Hello All

Apologies but I've no idea as to whether this post should be in the MBC community where I posted in Oct 2023 re a BBC article on prophylactic anastrazole (Arimidex) -or posting or here.

But advice from anywhere is welcome! Short background: I'm 74 and still standing. I was diagnosed with G2S2b IDC ER+PR+Her2 neg, in early 2008. Lumpectomy and ALND - 2cm tumour and 1 SN micrometastasis (next 9 nodes clear). FEC chemo then rads then 2008 -2018 on anastrazole (Arimidex). Side effects of this AI were daily low mood and almost daily early-morning headaches. I didn't know (and wasn't offered...) a chance to try another AI. In Oct 2021 I found a left-breast 8mm lump misdiagnosed as a 'benign cyst to be monitored'. By March 2022 it had increased to 11mm so was biopsied: ILC classical: lumpectomy and SN plus one (both clear). Because margins not clea...re-excision; margins still unclear so mastectomy - total 11.8cms! G2S2b T3N0M0. Chemo Paclitaxel as life-capacity for anthracyclines for 2008 chemo. Then DIHB-breathing rads (incl bolus) as 'scanty' cells still at margin. On exemestane (Aromasin) since Oct 2022.

It's the daily mild jet-lag fatigue that is totally crippling my quality of life so if any of you have any suggestions as to what I can do to stop it, please, please let me know. I am fit and otherwise healthy. Excellent diet, regular exercise, great group of family and friends. But the last is diminishing the longer I have to decline invitations, often at last minute, to meals/theatre/ galleries etc. My bloods incl thyroid all AOK. My oncologist usefully had me try modafinil (Provigil) but after initial lovely response, within a week or so's trial, its effect was modest at best. And my research has since revealed that it reduces (by an unknown degree) the efficacy of the exemestane! As I'm already PR negative, exemestane's efficacy is some 27% compared with 77% for dual ER/PR positive bc. I can't win.

So I can't be swapped to anstrazole/letrozole as I'm deemed resistant to them (the ILC is v indolent at Ki-67% <5%, MR 1) so I understand the ILC tumour is presumed to have been growing (undetected by my regular m'grams and U/S checks) during my 10 years on anastrazole. I have had 2 x 2wk breaks from exemestane to no avail but in Sept this year, a 4-week break and by beginning of 4th week Hallelujah! Normal energetic me!

A very long summary I'm sorry, but hopefully it answers any Qs you may have ahead of suggesting other avenues I could try to dump this awful, draining fatigue. Or am I at the Quantity vs Quantity fork in the road...? Having seen family and friends die of a range of cancers I don't think I can bring myself to drop the exemestane, despite its greatly reduced efficacy in my 2022 bc profile.

Thanks so much for reading this. I do hope you can help me.

[LeoEucalyptus]

Apols again, I don't know how to get into my post re fatigue, to correct it: my anastrazole was from 2008 to 2018. And to add: I've had 6mthly Zoledronic acid IV for 3 years from 2022 to this year. ie now completed. Warm wishes from LeoEucalyptus

[Cooking_nut]

Hello,

It sounds like you have been through a lot! I am in the U.S. Had triple positive cancer diagnosis in 2021 followed by lumpectomy, a lumpectomy revision, taxol, herceptin, radiation, and have now been on Anestrazole since March 2022. I am 67 and also have terrible fatigue.

Am here basically to offer sympathy and support.❤️ I often feel simply unable to move.

Plan to start water aerobics in Jan 2025. I must do something to try and combat the fatigue. I currently walk 2 x per day but that’s just not cutting it.

[LeoEucalyptus in reply to Cooking_nut]

Hello C.Nut

Thanks so much for getting in touch. I've never joined in-person cancer groups after one attempt way back in 2012 where I felt such a fraud as the others in my introduction circle had much worse prognoses.

You too have had so much thrown at you. You get to 65, looking forward to a happy 'older age' then whammo! Not only the bc diagnosis but then your heart sinks yet again when you're told they'll have to operate again to get clear margins...But well done re jumping the hurdles. Like everyone on this forum, at least we're still standing.

I understand that severe fatigue is a side-effect of active treatment ie surgery/chemo/rads, but it may continue for some of those eg us ☹️ who are on the daily aromatase inhibitors, moreso in those older at diagnosis...Plus, there is a variety of ways the fatigue may strike us eg physical exhaustion, mental shutdown, tired eyes etc.

Yes I've also been exercising too but not excessively, so a 5kms walk (used to be 7kms pre 2022 diagnosis) most days and climb up and down 6 flights of stairs in my building each day instead of using the lift. Plus floor exercises to deal with exemestane-induced tendonitis. I tried a very expensive month of acupuncture 2x p.wk in 2023 but to no avail. But your water aerobics sounds fun and worth trying. We're each unique so it may help you. I do hope so.

I must admit after 2 years of this crappy incessant fatigue, I find websites that exhort you to 'try to work through the fatigue' and 'plan your tasks' etc must be written by AI or at least by people who've never even had mild jetlag. Planning anything is just not possible. My fatigue symptom is just one: tired eyes. My eyelids simply get so heavy they have to shut, daily, suddenly, and at unpredictable times (hence the planning problem). Sleep is not often part of it for me - just sitting/lying down with eyes closed until it's passed - 2-3 hours later. Is your fatigue like that or how does yours affect you?

Please let me know and do keep me posted with your progress. Again,huge thanks.

[Cooking_nut in reply to LeoEucalyptus]

Hello again!

My fatigue is more like I’m just frozen in place. I know I should “just get up and do something” but I just feel so physically exhausted I cannot move.

Do you have neuropathy? I also have neuropathy on the bottoms of my feet. I take gabapentin for that which seems to help. I find it’s better walking than just standing in one spot. When I just stand in one place, my feet are burning.

I’ve also had quite a bit going on in my life and I think that probably adds to my mental and physical state. I left my husband and got divorced in 2023. In January 2024 I moved to a new city to be closer to my son. In April, my ex had an accident and I returned to supervise his medical care and he passed away after a 6 week medical battle.

The last few years have been a challenge. I’m cautiously optimistic that 2025 will be a good year.

So when your eyes close and you are not sleeping, are you/your brain resting? And you have no control over when this happens? Are you sitting? Can you drive?

Curious - do you have any pets? Mine do force me to stick to a schedule for them. I think it helps.

Let me hear from you 😊

[LeoEucalyptus in reply to Cooking_nut]

Hello again Cooking_nut,

Thanks so much for getting back to me. Seems you and I are amongst the few who have problematic fatigue!

I like your term 'frozen'. I find it's the suddenness eg I was sitting chatting with friend over lunch on Friday, and my eyelids suddenly felt so heavy. She's a good pal so understood when I just said I was closing my eyes while we cont'd!

You sure have been through the mental and emotional mill re marriage and ex's accident. You're a good woman to have nursed him. Two days after I was diagnosed in 2022 the buyer of my apartment reneged on rent-back deal so I had to find a rental pronto. Practically had a meltdown 😟. Unfortunately no pets in my rental but from what my dog-owning friends say, you're onto a winner there.

Neuropathy was definitely a problem on anastrozole back in 2008. Palms and soles. I had to tiptoe for first 20 mins or so when I got up each morning to go to work. But it had faded/gone after 6 mths. On exemestane I do notice my tingly soles - still, after 2 years - when I go to bed, but it's not a distraction. Just the wretched fatigue.

I saw my oncologist last Weds morning, to say I can't cope any more with it. As a further eg, after seeing her I came home, had lunch and had to doze until 6pm. Then after dressing/b'fast on Thurs, I had to...go lie under duvet until midday. Lunch, chores and then back to dozing. No surprise that I then had insomnia. Come Friday morning I was so desperate by mid morning that I took a 100mg modafinil (op cit) but it doesn't sort medication fatigue. It does work but gives me...insomnia. And it only works for a day ie it has no effect if I take it on 2 consecutive days so I've shelved it.

Anyway, oncologist has heeded my plea - I'm off exemestane from 17/12 for 6 weeks until I see her again on 29/1 to report. If this confirms the earlier 4-week break ie that exemestane is the cause, then it'll have to be Tamoxifen. But as I noted previously, the exemestane's efficacy is only 27% in my PR -ve ILC. As Tamoxifen's overall efficacy is considerably less than exemestane in ER+ve/PR+ve ILC, I guess in mine I'm looking at maybe 20% efficacy. Hmmmm. Still, the sad stories of those who've secondary bc do have me realise I'm still lucky.

I have seen a reputable research paper 2023-ish re exemestane 3x per week with same efficacy as daily, at least in reducing circulating estrogen and no side-effects greater than G1. But sample too small - only 170 postmenopausal women and only for 4 weeks pre-surgery, so obviously of no real relevance. And of course, pharma maker wouldn't be funding a more compelling investigation of same.🤤

So, while I'm wide awake, I'll go finish writing my Christmas cards. Yes indeed, old habits die hard.

Festive greetings to you Cooking_Nut and any other readers, and warmest wishes for 2025.

[Cooking_nut]

Hello again,

You’re certainly right about the pharmacy companies not wanting us to reduce our meds. It’s a challenge to get an honest answer these days in so many areas.

Just curious: when your eyes start to shut do you actually go to sleep or are you still listening?And do you have your living situation all sorted out?

I mostly find myself unable to move once I sit down. I probably mentioned that I have quite a bit of joint pain from the anestrazole. I think this contributes to me not wanting to get up. If I’m honest, I might be a tad depressed too. I’m not a fan of gloomy weather and the holidays can be too much. I too am sending out cards.

Must close for tonight. Wish you a lovely holiday season!

[ABC58]

I’m sorry you’re feeling so rough ,

Following similar treatment in 2009 I tried to be the same person I had been , the mindset being “ I’ve been treated so I’m better now ! “ I hadn’t taken in to account the side effects of on going treatment or the emotional rollercoaster I’d been through . Think you need to find the “ new “ you .

I’d say now be kind to yourself , listen to your body , and rework your life to a speed you can cope with ie if you know you’ve got a busy day coming up , do minimal the day before and after . Also try and find out if there are any supplements ( that don’t react with your medication ) that could give you a boost , small steps , Good luck xx

[Cooking_nut in reply to ABC58]

Thank you for replying. I do tend to be hard on myself sometimes. And yes, I need to find a new me after everything that’s happened. I’m kind of in limbo now which I guess is just fine until my new life gets sorted out.

I will definitely ask about supplements. I see my PCP early this year so will ask her.

Happy New Year to you ❤️

[ABC58 in reply to Cooking_nut]

and to you xx

[Redwine50]

i still have fatigue and ache every day.ive been on tamoxifen 9years .GP won’t take me off it.so support from family and friends I try and find something positive.I always think someone is worse off than me.its hard but we are survivor s .stay strong and sending healing hugs

[LeoEucalyptus in reply to Redwine50]

Hello All

Just to update you re my daily fatigue - and in case someone else has the problem.

I was off exemestane for 6 weeks to end Jan this year (2025) and fatigue fell away to may 20% of prior levels. I felt normal again. Ergo exemestane is the cause of my fatigue.

Onco and I agreed to try letrozole in hope that I would have no more than the same side effects as in 2008-2018 ie low mood and daily early-morn headaches. I figured that I could deal with these - it's fatigue I can't cope with. All this is ignoring the probable fact that I'm resistant to AIs anyway given second primary must have started while I was still on anastrazole. See later paragraph below. *

Letrozole impact...daily fatigue tho' slightly less 'dense' than exemestane.

So on 1 March I was back onto exemestane given presumption that it may be more effective than the 'zoles, in my case. Fatigue back back to usual intensity - plus insomnia which is either or both of 'initial' and 'middle' (3am).

How am I dealing with it this time round? Well I've ploughed through all the reputable sites. I'm now taking 2000iu of Vit D first thing with b'fast (to aid easing of fatigue) and 200mg of mag bisglycinate (to aid sleep) about 30 mins before lights out. That's it for the supplements. They have one month to prove themselves, or in the bin they go. I exercise via 5kms approx daily, climb 70stairs 10x every 2 days, limit my black americano coffee to 2 cups each morning, no blue screens after 8pm, lights out no later than 10.30pm. What an exciting life 😂😂. If I wake up at 3am then it's to loo and back to bed and force myself to read a book until it's unbearable (otherwise I would just lie awake for coupla hours).

My only other daily pills are the prescribed exemestane and calcium.

NB I promise to update with the impact of this latest routine in the hope that it may give hope to others.

*Re anyone asking why no immunotherapy, given that this is a second primary BC? As I've posted elsewhere, my second primary (ILC, whereas first was IDC) is/was a very slow grower with Ki-67 of<5% and mitotic rate of 1. Final extent 11.8cms or 118mms but no mets found so T3N0M0. As the initial lump I found in Sept 2021 was 8mms when u/s in Oct 2021 (deemed a benign cyst 😂😱) and it grew under monitoring to 10mms in 5 mths in Mar 2022 when biopsied, ie 25% increase, then it must have had a v slow doubling time of 20mths (which supports the Ki-67 and MR findings). If one halves backwards this second primary must have started while I was still on anastrazole.

After all these ops and treatments (plus a few prior scans and exploratories eg gastroscopy) including lumpectomy/SND with positive margins; re-excision with positive margins; completion mastectomy with positive margins; therefore rads as well; plus EndoPredict high-risk score of 4.2 therefore chemo too (paclitaxel because I'd almost reached anthracycline -FEC- lifetime max with first BC)...plus my huge anxiety and exhaustion and fatigue, my onco determined that I would not cope with immunotherapy eg verzenio (I am petite and now 74yrs). Hence, I'm on exemestane only.

My 3yr anniversary PET/CT scan results to come shortly and while scans are not brilliant at detecting ILC mets, they're better than nothing. So here's hoping my ILC second BC is indeed that very rare breast cancer T3N0M0. 🤞

Warm wishes to all

LeoEucalyptus