Yes I have experienced hair loss. Everywhere except back of my head, neck line and bum unfortunately.
Not had any eye lashes since chemo.
Got very thin light coloured eyebrows and thinking of having some stenciled on, which is totally out of character for me!
Always had hair so thick that for a while after it grew back after chemo, I could get away with using clippers all over, saving me hairdresser costs and it looked great. It is only now , after a year of Abemiciclib, that I have had to let it grow longer for a proper professional, rather thin, pixie cut with a fringe to cover very slowly receding hair line at the front. I will be coming off Abemi in prep for an operation soon, and hoping the break will slow down the hair loss such that I won’t have to go back to a wig or chemo cap.
As far as the head is concerned, it is very slow hair loss, nothing like the complete loss I got after first ever FEC. I am at an age where my eye lashes were getting shorter in any case but still miss them and am glad to cover up eyebrows and eyes with large glasses.
Hopefully yours will grow back when you come off Abemiciclib but not sure mine will x
Hey Abemified, yes I can totally relate to not wanting people to think I’m not coping, even though really I’m not coping so well at all!
Since my public toileting disaster I invested in a couple of cards indicating my urgent toilet needs, one is from Macmillan and also comes with a little key fob version, and one is from Vivactive, I got it with a Radar key. I’m hoping that should the need arise again these cards will give me greater confidence to ask at shops, pubs, restaurants etc…
I thought about getting a sunflower Invisible Disabilities lanyard too but am still deciding on that.
To be honest I was never much for getting out and about anyway, being more of an indoor cat, but I never thought I would stay indoors and sleep quite as much as I am on Abemaciclib! I didn’t like the sound of it when my oncologist first mentioned it and almost refused but I feel like anything is worth a try for the chance of preventing the nasty disease from coming back.
Having said that, this medication is proving almost as much of a challenge for me as the chemo, but different because the idea of going through this for 2 years is horrible, at least my chemo treatment was only 5 months. I was so terrified of chemo when I was first diagnosed, I had no idea I would be looking at 2 more years on an almost-as-bad drug!
I requested a dose reduction from the chemo unit yesterday, the nurse said she would pass this along to my oncologist and I hope she agrees or I think I may start having to throw my toys out of the pram! Based on what others have said about their dose reductions and the importance of just taking it twice a day regardless of dosage, I do wonder at my oncologist sticking so firmly to the full dose for me.
Thankfully so far the hair loss hasn’t been dramatic. The front of my hair along the hairline has struggled to grow back as quickly as the rest of my hair since the chemo, and I feel like that is even more the case since starting on the Abemaciclib. I truly hope I won’t need to return to the head scarfs but if I do, so be it. The worst thing was losing my lashes and brows on the chemo, I didn’t like seeing myself in the mirror without them and wouldn’t go out without make up on to make me look more like myself.
So sorry to hear that you and Victoria1 have gone through the hair loss again. There really seems to be no end to the torment does there?!
Sending all the best to you and to all
Hi moonsox, apologies for singling you out but I am having difficulty posting on the forum and your thread is so relevant. To all tose on abemaciclib for early breast cancer high risk recurrence. I typed ‘latest news abemaciclib’ into google and found a two day old post from eli Lilley giving latest five year stats. Its well worth a read and positive news…we all need some positivity while taking this good but challenging drug . Sorry i cant put up a link either but google search as above should take you too it.
All the best everyone x
Hi Caroleanne
Thanks for getting in touch. I too am having difficulty replying to posts, bcn have sent me links but the recent ones don’t have the option to reply, and i haven’t the time or understanding how to achieve. the former forum was SO EASY, this system is not.
I’m now on 50mg verzenios, and just about coping with symptoms, the ‘squits’ have stopped, the headaches and tiredness not, i do keep a meticulous diary - i need to with type IV allergies. I tried to get back to a post re taking herbal supplements. [pebbles51]. When i broached the subject with my oncology team, seemed i knew more than they did, subsequently the calcium adcal has been wasted on me, because of the fruttie flavour and lower thean supplements i’m already taking. Earlier my chemotherapy oncologist advised me to stop taking all which put my health back negatively, so glad got main ones back on board.
I eat healthily, but our soils are depleted, and i can’t afford organic except for the food i’m learning to grow. I take, Cal Mag ratio 2:1 400 cal/200mag. Evening primrose 2000mg per day, Cod liver oil 1000mg pd. D3 5000iu, multi vit and acidophilus.
My mental health is helped with reiki and being around animals, fortunately i work with horses. and i ensure i walk 3 miles per week at the mo. sorry if this reply a little jumbled, but the box doesn’t allow for me to check back easily, and is so small. feel free to keep in touch, and thank you xx.
Hi @beck; just saw your post. I was initially on 150 mg, 2x daily Abemaciclib, but I had such severe diarrhea so that my onc reduced the dosage to 100 mg, 2x daily. This worked better for me, but I do so absolutely agree with your sentiments that chemo is only for 6 months; do we want to be on a cancer drug for 2 more years and in addition, immuno compromised during this duration… sigh. My white blood count has dropped drastically, plus my kidney enzymes are affected. I sure hope this Abemaciclib will do what it is supposed to do, i.e prevent recurrence… do keep us posted on how are you doing with Abemaciclib. Sending you hugs.
Hi Siggi and all! I have been putting off posting as I wasn’t sure of the good news but, my oncologist approved a reduction in dose and it has made SO much difference!
I reduced to 100mg a week last Friday and over that weekend started to feel so much better, I thought it might be the initial result of the lower dose and that I would probably feel dreadful again soon but so far I haven’t, finger crossed!
I actually have some energy now and feel like two years on this stuff is not going to be impossible. Surprisingly I had not turned neutropenic again, but that just proved how much I needed the dose reduced since I wasn’t neutropenic but still felt awful. I’m still having a bit of bowel discomfort but don’t need to take the imodium anymore. I’m still feeling a tiny bit fatigued but it is at a tolerable level and my appetite has come back!
Indeed I hope this med will do what it’s supposed to and that this all proves worth it. I very much appreciate the messages on this forum that said that it’s the frequency of taking the abemaciclib rather than a high dose that is the important thing, I think that gave me all the more confidence to call the ward and ask for a reduction in the dose, so thank you to all who shared that information!
I am curious to see if I might turn neutropenic again even on the reduced dose, but am just so relieved at the huge difference the reduction has made.
Sending hugs to all
I am glad you are feeling so much better. Apologies if you know this already but at the Madrid conference last Friday there was also a poster presentation confirming the efficacy of reduced doses.
That’s amazing, Bookie, thanks so much! I didn’t know about the conference or the presentation so thank you for sharing the good news, very much appreciated.
Just a quickie to say thankyou for the BCN for sending me a link direct to this group, as i had no chance of finding it or any of the other threads they have sent me links to that don’t have the reply feature.
i checked my FBC and yes both my wbc and rbc are low, which confirms the tiredness - and i shall be reporting this to the christie team, i need more hours to do … and catch up, moonsox.
Im currently nearing the end of cycle 2. Cycle 1 was awful really bad stomach cramps and diarrhoea iwas also really lightheaded/ dizzy from week 2 which got so bad that i barely moved from my chair . Oncologist told me to take a 2 week break and cycle 2 was reduced to 100mg twice a day which has been much better my stomach on the whole has been fine with just the occasional dizzy spell . I would recommend suffering bad side effects to talk to the oncologist about a dose reduction, 2 year’s is a long time to suffer bad reactions. Good luck to you all x
My wife has been on Verzenio since last 1 year and due to side effects is taking half the dose.
She already tried iBrance and Kisqali and had to stop due to severe side effects.
Can a person be on Verzenio for 5 or more years.
(Wife with secondary mets to Bones, diagnosed Feb 2022)
Yes, very fed up about my hair, too! After a double mastectomy, nodes-removal, months of chemo with dreadful side-effects and radiotherapy, I had a “honeymoon” of c.7weeks before starting Abemaciclib and Letrozole - hair and nails started re-growing, feet neuropathy faded etc. etc. and I began to feel more like me again. Now completed 2 cycles of Abemaciclib and, though less grim than chemo, my hair is thinning again, I have near daily diahrroea and am exhausted. Going to ask for dose reduction (or may even give up…) next week as am miserable at the thought of years like this. Such a let-down after getting through chemo. And had no idea this long-term treatment would be so bad. Sympathies and good luck!
Hi Clarissa1
I too am on Letrozole and Verzenios Abemaciclib, I started on 250mg but worked my way down to 50 mg, and now have an even balance.
I’m glad… i know that doesn’t sound right - but glad you mention Feet Neuropathy, i’ve only just realised this is what the dry feet with me actually is, but glad to hear there’s a chance mine will fade, and keep doing foot massages to try and resolve.
I didn’t have any bad negative side to Radiotherapy just very sleepy at the end. even now i sleep for up to 9 hours. My nails on my hands started to regrow but all my toe nails with exception of big toe nails that are not growing following the dropping off of the nail.
Being led to believe of the long term benefits of the abemaciclib i’m willing to continue for the 2 years, and if you get down to the 5omg level i’m sure your symptoms will improve and you also see the benefits.
We ladies are strong having gone through what we have, and this strength will continue. My sisiter has just completed her 10 years and is a great role model for me. So i wish you well on our journey, and offer you any sympathies you need.
Love and light, Mx
Hi Clarissa 1,
Yep like you I am on this treatment. The full dose was horrible, I just felt like a total zombie all the time. As moonsox said, a reduction in dosage may be all you need to feel better and be able to stick to it for the entire course. I am down to 100mg and it did make a difference, I still feel very tired and can sleep all day long, but when I do get going or have appointments I can function better on the lower dose. Thankfully during chemo I didn’t lose any nails but they did turn a strange stripey colour, and the abemaciclib brought that back and has made my nails very prone to splitting and breaking. My nails and fingertips look very similar to my dear old Grandma’s did when she was in her 80s, because of her osteoporosis! I had thought I would face that effect on the nails some day, but not this soon! It is tolerable though and I am just keeping them very short and using an intensive hand and nail moisturiser.
I also still get diarrhoea on the reduced dose but can go for days without it even without the imodium which is an improvement. I am given the imodium on prescription by the same unit that gives me the abemaciclib, if you aren’t then I’m sure you can get some if you ask. They should be keeping a close eye on how much diarrhoea you have and prescribe to mitigate it.
Like you, I underestimated how grim this treatment would be and really resent that it has to be a two year course. At least the chemo was only a matter of months, right?!
As I say I am still having a lot of fatigue and it’s a real battle to stay motivated, but I agreed with my oncologist that I wouldn’t want to go any lower, and am just having faith that this stuff will work for long term prevention.
All the very best to you and I hope that you can either get a dose reduction or that the meds settle for you. Oh, even though I was neutropenic a couple of times, I still had to actively request the dose reduction so please don’t by shy about asking for it.
Best wishes
I’m new to all this having started Abemaciclib only today . I was on Ricociclib for 6 months but it caused Lung inflammation , which meant coming off it for a month . A new CT scan revealed the inflammation had gone which determined it was caused by the Ribociclib. So it was permanently stopped as it will just cause further inflammation if I carried in with it.
Ribociclib wasn’t overly known for causing diarrhoea, but upon looking back it may well have been the cause of mine. I suffered at least once a week, waking usually in the early hours and having several bouts, between then and mid morning. Then Constipation followed and they caused further bowel issues, fissures, and bleeding.
I used to know when it was going to happen as I developed a sulphur smelling gas and burp, like rotten eggs.
So as I said I’ve now been put on this drug, and I’m much more nervous than before. I’m stage four breast cancer, and I’m also a man.
So I’ve taken both doses today, and the only thing of noticed so far is butterflies in my gut and my lower teeth seem very sensitive , I was very dubious starting this morning as I had bouts of diarrhoea last night……that’s without this pill😰
I’m more nervous that I’ve got a few trips to make in the next three weeks, all long distance by train, and the thought of a 4 hr train ride with the possibility of the Runs doesn’t excite me one bit.
I’m on these now until, they don’t work, or like before the side effects are detrimental to my health, so I’m praying it’s all manageable .
I wish you all on this pill, the very best and hope I can manage to cope on it myself.
hi
And welcome to the forum, i’m not sure if you are also on letrozole, i ask because i find the Letrozole and the Verzenios which is my Abemaciclib work well together one counterbalances the other. i have taken daily records noting times, how i feel rumbles instomach, headaches, burps etc, and am able to 80% of time know when i was due to have a bowel movement. Presumable if you are going on the train then there will be accdess to the toilet. I’d pack an emergency bag which shoudl contain - Long big pads, wet wipes and a sheet of loperamide. if you have a loose movement, then take the loperamide. clean yourself with wet wipes and replace your large pad. i still ensure i have several said bags in each vehicle i regularly travel in, ie my car and my partners, and in a crry bag when out with others. KI also find paracetamols useful for the dehydration, oh and a bottle of water to try and avoid this.
i hope these tips help.
Generally your team start you on the highest dose ie 250mg, I was moved through 250mg, then 100mg and am now on 50mg cycle 7. My body has adapted. don’t be afraid in speaking your symptoms as they are, your christie team are used to this.
But it does help if you can sumarise for them your symptoms and how often they reoccur, in time for you consultation.
Good luck, and keep in touch. Moonsox xxx
Thank you for the reply…I was on letrozole back in 2019 but suffered quite badly of it, and tamoxifen, and the Extamastene, which caused an Abdominal Aortic Aneurysm to grow very quickly. All hormone therapy was stopped ,and I had a graft repair operation to the AAA…
Sadly June 2023 I was diagnosed with stage 4 as it has now spread to the lungs…this time with the AAA repaired I’m now on Anastrozole Zolodex originally Ribociclib now Abemaciclib.
Access to train loos on the whole are ok but I find London ones very busy, and I know my bowels when I’ve got to go I’ve got to go……but I’ll take a bag 25th me thanks…
Re the spelling, i empathise with you, mine is rubbish, as is my memory, it’s shot to bits. I thought 4.5 years on after initial treatment I’d be ok , it’s now even worse.
xx
. Sorry i cant put up a link either but google search as above should take you too it.