@jenny4 I’m sorry to hear Ribo is a struggle. I’ve had a 5 week break for surgery but I will be going back at a lower dose as it wiped me out. I had my blood test today so fingers crossed all is ok when I speak to the onco tomorrow
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bit late to this one but my hair has just gone curly wurly and is growing out rather than down. It’s really dark at the back. Eyebrows are going again and no leg hair (all Abemaciclib). I’m on a break from it and have had the dose lowered once, may happen again tomorrow or they might put me on ribococlib which apparently has fewer/milder side effects? So now hearing some of you struggling with ribococlib I’m not so sure. I’ve booked my first flight in eighteen months - a week in Italy next month, can’t wait. And my youngest daughter’s graduation in July, which frankly this time last year I wasn’t sure I’d make.
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Your hair looks great-I’d never have guessed it was post-chemo hair! I hope you have a wonderful time at the graduation ceremony and in Italy; you really deserve to.
I think lots of people get on ok with Ribo if they do switch you to that. I don’t have any real side effects apart some fatigue and the low neutrophils.
Most of my side effects are from Letrozole. Has anyone found a solution for joint pain in hands and feet? My hands are like claws when I wake up and I have to hobble downstairs…
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Similar story here - I joke that I have a similar style to Marv one of the villains in Home Alone 
. Very curly and bushy in the back but the sides are slower. Lovely picture @nelly1. Similarly my eyebrows have started thinning again on abemaciclib but everywhere else seems ok at the moment. Washed out day today due to a bout of treatment related diarrhoea but on the positive 6 May last year I had my mastectomy - a year has flown and we all deserve a bit more normality this Spring/Summer. @jenny4 hope things settle down - at least more excuse for dark chocolate . @moomoo716 hope all went well with you at the appointment.
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Quick question - have you reduced your dose of abemaciclib due to diarrhoea? I’ve found it hard to cope with and I’m on a break and about to reduce again to 50. I’m being assured the efficacy won’t be affected by reductions in dose and breaks but that doesn’t make sense to me.
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@nelly1 I have been ok generally but stress worsened my symptoms end of last week resulting in two bouts within four days. They told me the same in the initial appointment before starting that if needed they could reduce and that evidence shows it’s as effective. Still on 150mg atm 
.
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@nelly1 great hair look.
I’m back on the Ribo tomorrow at a lower dose so we shall see how it goes. It would be great to find a dosage level I can cope with without destroying my quality of life.
Also back to the office after the surgery. Dare I hope for a bit of “normal” life for a while.
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Good luck with your return to work & I hope the dose reduction works for you. I’m waiting on bloods (again) and hoping my neutrophils have gone up enough to restart this week…
While in the blood queue today I saw an old acquaintance who has stage 4 bowel cancer. She’s early 40s, super slim and super strong. Seems so bloody unfair and was a reminder that I should be grateful for all the treatment I’m on.
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This all definitely seems unfair. I’m not old but seeing women younger than me face this makes me feel very sad.
Fingers crossed the neutrophils bounce back up for you. I must admit the thought of being permanently under par for 3 years is daunting. The answer might be more chocolate so I’m giving that a go 
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Does anyone else feel like they expected to feel a bit more like themselves by now but actually don’t? It’s 5 months since my chemo ended, 2 months since radio ended, Ribo and letrezol aren’t too bad, my hair’s growing back, my energy is improving (although it’s really easy to overdo it) and I’m still off work but hopefully going back in July , I’m doing some fun things…….. but I still feel meh 
I’m really grateful to be in this position but I thought I’d feel more settled by now. I have a feeling that I’m doing lots of fun things to distract myself from facing what I’ve actually been through. Has anyone found therapy useful? I’ve got my moving forward course on Thursday so hopefully that might help.
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Well I could have written this post myself too! I thought I would have more energy by now. I returned to work in Feb but went off sick after two months. It was way too much for me. I know I did the marathon but that was one day, walking and resting on benches on the way. If I have a day trip somewhere I am exhausted after. Most days by 2pm I can barely keep my eyes open, so I’m either having a nap or trying to force myself to stay awake and do something. I can honestly say that I massively underestimated the fatigue from all of this.
I had endometriosis already which has caused me chronic fatigue and pain for 20+ years, it’s been hard for me to work all that time. Adding on fatigue from last year’s treatment, poor sleep and side effects from Letrozole which will be long-term, I think I am done with work. I’m seeing my breast cancer surgeon tomorrow for a check up and I will ask her if she can support my ill health retirement application. I’m 51 and it’s been so hard to manage work before all this. I had a review with occupational health and they have written a supportive report saying early retirement is appropriate. Fingers crossed the surgeon will support me too, then I need to ask my GP. She signed me off for 3 months and I think she will be guided by the surgeon. I honestly had no clue how tough the fatigue would be, and I’m used to fatigue so it’s really dumb that I underestimated it! I just thought I would get back to where I was before by now, not still need the daily afternoon nap!
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I’m really struggling with fatigue too-much more so than a few months ago. I think it’s the cumulative effect of Ribo, plus dreadful sleep courtesy of Letrozole and the pressure to be on form at work & home. I actually fell asleep in a team meeting today which was pretty humiliating. I’m going to try to dial things back so I don’t overdo things on good days and end up slumping.
I hope your surgeon is supportive @runnerjen & your request is accepted.
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Sorry to hear you’re feeling like that. It resonates with me. I found both the moving forward course and therapy (with a specific cancer psychologist - cuts out the need for too much explanation) really helpful.
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Completely empathise re rubbish sleep and I hope you get the support you need to finish working. Typical night for me last night, went to bed at 11, didn’t go to sleep until 5, woke at 9.25 and had a meeting at 9.30 for which I was late. I WFH in the spare bedroom and most afternoons I’m on there “just having a lie down” which often turns into a nap. Clearly unsustainable, but I’ve come to realise I’m scared of finishing work because I don’t know what I’ll do and I’m worried I’ll just become completely nocturnal and spend my days dozing.
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I read that at 3am @nelly1 I was wide awake. I’m so sorry you’re so fatigued as well. That actually sounds worse than me. I don’t know how you are working. I tend to go to bed around 9-10, read a bit then sleep on and off (hot flushes and numb hands wake me up a lot) then I wake around 2-3 and might be awake a couple of hours. Then awake once the alarm goes off at either 5.30 or 7 for my husband depending on if it’s an office or WFH day. I feel woolly headed all day, then feel exhausted by 2pm and I’m useless for anything.
I told my surgeon yesterday, she understood completely and dictated a letter supporting my early retirement there and then. She said the side effects vary with people but they can be very hard to cope with. On top of pre-existing endo she agreed it’s too much. I was so relieved!
She examined me (all good) and is booking my mammogram appointment asap, then confirmed I get 5 total annual then go on NHS routine checks. She suggested I could try a low dose antidepressant for the hot flushes. I will consider it if I get really fed up, have any of you tried that?
I will have a Letrozole review in 5 years with a view to extending to 8-10 years. She said there are new aromatase inhibitor drugs being developed which should have fewer side effects and she said there is a good chance that they might be available to offer me. So that seems positive. She mentioned CBT as well for hot flushes which I can self-refer to, and said keep running / moving for your joints. She also said I should see GP about my possible carpal tunnel issue which started last year before Letrozole but agreed the drug can make it worse and it definitely has done that.
Like you have all said here, I’m grateful for the drugs really, but why are side effects always crap? Why aren’t they positive, like ‘makes your hair really shiny’ or ‘gives you a really glowing complexion’? ‘This drug may cause you to feel fabulous.’ We’ll have that one please! Xx
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It’s great news that new and better AIs are in development. Fingers crossed that we can all benefit from them as Letrozole is brutal.
It’s also great that your surgeon supported you @runnerjen. I’ve just asked to reduce my work hours for five months as I feel like my recovery is in reverse. A lovely BCN nurse reassured me yesterday that it is normal to struggle with Letrozole & Ribo and gave me the push I needed to stop pretending to be fine and make some changes.
For those of you who are struggling with sleep my GP refused to give me more pills and put me on a CBT for insomnia programme called Sleep Station. I was VERY reluctant as sleep compression is a key part of the programme (basically delaying bedtime until you’re so exhausted you have to sleep and getting out of bed if you wake up & can’t get back to sleep). It’s meant to improve sleep quality and then you gradually move your bedtime earlier as you sleep longer. It felt like torture at first as I was so knackered, but my sleep quality is improving. I no longer wake up every hour or so and I normally fall asleep straight away. I’m still not getting enough sleep but I can see that things are improving and I no longer dread going to bed. The programme is free on the NHS so might help if you’ve tried everything else….
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