Hello girls (and I guess a few boys as they have boobs too!)
For those of you on Ribociclib and aromatise inhibitors (Iām on Anastrazole) can you say if you have lost any hair, and, if so, after how many cycles, how much hair and where from please 
?
I have only completed two cycles and have been saying that I havenāt lost any hair ā¦ BUTā¦ this evening I was looking at my hair and suddenly realised why I havenāt been able to get it to look rightā¦ my hair is thinning at the peaks (?) either side of my forehead!! I cut my hair short in February after diagnosis of BC, simply because I wanted to be differentā facing this state. But this thinning, right at the front, so noticeable has knocked me sidewaysā¦ I am supposed to be on this medication for three yearsā¦ and Iām dreading it thinning more. Iāve always had a lot of hair and itās kind of my signature (not much else to see) so itās upset me a lot. I saw the oncologist today following my blood tests on Monday just, and he has given me another week off before starting Cycle 3 and has also said he will reduce the dose to one a day, instead of twoā¦ Do any of you have a similar experience and if your dose was reduced, was the hair loss reduced too? My husband has gone straight onto Amazon and bought the Regaine for women PLUS Plantur 39, so Iāll see what they do. Would be so interested in your own experiences of hair loss. Also, itās not like itās falling out in lumps,āor clogging the shower or my combā¦ just this sneaky thinning. 
Huge love and strength to all your BC gals and guys out there! 
we will prevail, even if we look like Jason Statham! 
m xxx
I will be on this 3 years after my chemo has finished and I am worried about the hair side effects too. How will it ever get a chance to grow back if it does all come out. Iāll be interested to see your journey and how you get on. Good luck.
Hi there @mels. Iām on Abemaciclib and have had exactly the same thinning as you. I noticed it after about 3 cycles. Iām now on the 6th cycle. Iām also on Letrazole. After the natural menopause I had some overall hair thinning so Iām not sure if the Letrazole is contributing as well. One of my eyebrows has gone thin as well. I lost both during chemo and neither came back totally, and the right one was always worse but itās thinner now.
I havenāt reduced the dose. My hair generally is growing back ok and I have now had about 4 or 5 cuts since chemo finished and the style I have now, think electrocuted hedgehog, covers the thinning bits at the sides 
Exactly 
I have no idea what will happen to our hair and its ability to grow backā¦ the sites say itās just hair thinning, but thatās hardly an answer. I know we are all different, but, perhaps vainly, stupidly, I am finding this side effect the most difficult. Iāve been able to dress, make up, adjust bras etc to look ānormalā (horrible word) but losing my hair is so visual, so obvious. 
I also sound totally shitty about this effect in the face of all the girls who have had to go through chemotherapy and had NO choice about their hair loss and to them, I apologise for sounding so childish. Itās all so horrible and it doesnāt seem to stop.
Thank you for your response, the time you took to do it means a lot right now. m x
Hi and thank you for responding . So you are four cycles ahead of meā¦ itās all so interesting how we all react. I am 62 and was on the full gamut of HRT. Which is now cut off. Therefore, no HRT, impacted further by Letrozole etc , then Ribociclib knocking six bells out of our bodiesā¦ 
the hair thing has upset me and umm of you all if you are my age, have you noticed a difficulty pooing? I can remember my mother (who is 93 and still lives with us) desperately trying to poo when she was rising 50. She was taken off HRT at 60 and not long after, her womb prolapsed, her bladder prolapsed and her rectum prolapsed. Therefore, for the last thirty years, she has felt the āneedā to wee almost constantly due to her prolapsed bladder, she has had to use a ring to hold up her cervix which affected her sex life (sheās an Aries 
ā¦ I believe being hyper sexed is a thing ā¦ but Iām Pisces 
so Iām still busy building a beautiful creative home 
) and her ability to simply have a daily poo has been upsetting. I now feel myself as if my rectum has dropped and is just enveloping my poo and crushing it in place, rather than pushing it through. Itās all so distressing sorry for going off piste, but one idea follows another and I guess I need to offloadā¦ love to you all m xx
This is exactly how Iāve felt. I feel so bad that Iām so so worried about my hair when when some are very poorly with horrible aggressive cancer and Iām very aware of that but then oh my goodness my hair. Iām 42 and have had long hair and a fringe all my life and I absolutely just canāt deal with this side of it. Iām not going to say weāll be ok as eveyone says that to me. Iāll just say if we can fast forward a fair while it will be ok.
If they reduce your dose then maybe itāll change. Maybe this was the worse of it.
My cancer is a hormone cancer. I was only supposed to be having ājust a bit of radioā then my onco test came back at 32 and in less than two weeks everything has changed and Iāll be starting 6 sessions of chemo then all this horrible stuff after. The oncologist said Ribociclib will have a 3/4% chance of working for me. That low but for so many side effects.
Hi Mels. Iām on Palbociclib and Letrazole and my hair has been thinning since Iāve been on them - 2.5 years. The advice Iāve been given is not to wash it as frequently as I had been doing, avoid hairdryers and straighteners and leave to dry naturally and to brush it as gently as possible. I also use gentle shampoo and conditioner (currently trying Moo Goo but have tried Simple Shampoo and conditioner and one from Holland and Barrett) and sometimes things to try to tame it as it is flyaway and static looking most of the time. I still brush out lots of hair but it is gradually lessening (I hope).
For the poo issue I take a sachet of Cosmicol every other day which softens the stools and helps a lot. This was on the advice of my oncologist. The dose of Palbociclib was reduced after being hospitalised with diverticulitis.
Hoping things improve for you. x
Hi DeeBee,
Thanks so much for all that advice, I shall look up the products you suggest. Itās just sooooo annoying!! Thank you and good luck to you ! M xxxx
By the way, Cosmico is exactly the same as Laxido, Movocol and others apart from the flavour. I am in the UK and my GP prescribes the Cosmicol for me. I also find it easier to take if I mix it up as instructed and then leave it for about 10 minutes or more as it dissolves properly by then and tastes better to me. When I came out of hospital, I was taking 2 sachets a day (morning and evening) to try to unbung me even after an enema in hospital. It later changed to 1 a day and then to the 1 every other day. It works for me and hope it will for you. xxx
Ah yes, my mother has Laxido ā¦ I might go and steal a box! Being constipated is so painful and uncomfortable, people joke about it, but it really is awful.
Hope youāre all sorted inside now, my father had it and had several inches of bowel removed back in the seventies. Actually, thatās when he gave up smoking, as they were allowed to smoke on the ward in those days and he said the smoke would make him cough and put him in agony! Decent reason to give up!
Thank you for your advice and for taking the time to respond to me. Happy sunny 
Autumnal 
Saturday! M xx
Hi
Thank you for responding to me and I feel the same āguiltā as you at fussing about my hair and weight, but, like you, my hair has been a major part of who āI amā. So itās knocking me for six. I cut it short when I was diagnosed, just to be a different person and Iāve loved it short, but thinningā¦???!! Nooooo!
My oncotype thankfully came back at 14, so had 15 rounds of radio. But I am majorly interested that your oncologist has told you that Ribociclib will only decrease your chance of reoccurrence by 4-5%??? I havenāt been given any percentage like that, and I would really question whether it was worth it! Iāve been told, or Iāve read, who knows, that it can halve the chances of reoccurrenceā¦ which is massively different to your 4-5%ā¦
how odd?! Iām seeing mine next week and will pose him the questionā¦ itās difficult to determine between them wanting to throw everything in their gamut at the cancers and quality of life during that timeā¦ itās their job to do all in their power to help us, but they donāt have to look in the mirror and see a different person. Iāll attach a couple of photos, it sounds like you will be the same with your long hairā¦ itās a signature. Massive good luck with the chemoā¦ my cousin said take blankets as you get so cold 
and an audible book, so you donāt even have to hold a book 
up. I really feel for you! Sending strength. M xxxx
Your short and long hair look lovely. Iām sure you canāt wait for long back but the short looks really classy too. Definitely ask your oncologist. With hormone therapy only my reccourance in 10 years is 25% with hormone therapy only ( according to the Ono dx full report which I requested a copy off), with chemo 15% then the ribociclib takes 3-4% off that. Whether it is different for each person and the impact is relevant to their recurrence Iām not sure. X
Hi, I have stage 4 Metastatic breast cancer and am on Riciclib and Letrozol for the foreseeable. I started in February 2025 and as others have said have noticed significant hair loss mostly on the front. I reluctantly got measured for a real hair wig and itās the best thing ever. I feel like me again.
Sending good wishes and hugs to all coping with this horrible disease.
I was on letrozole and experienced hair thinning.
Iām now stage 4 so Iām on fulvestrant and ribociclib. Iāve had hair loss as well as hair thinning and now wear a real hair integrated hair system whixh is beaded into my own hair.
It was my solution but itās not cheap.
Hopefully youāll be luckier than me and your hair will not thin so much or come out
Hi Jan,
Thank you for taking the time to respond to my post. Iāve actually connected with a local girl who helps women like us with either hair pieces, or full wigs, so thatās made me feel happier.
Tomorrow I go back for more blood 
tests and will have the lower dose Ribociclib given to me on Wednesday. Who know, the lower dose might alleviate all these problemsā¦
Much love and luck to you!
Melanie xx
Iām on abemaciclib and that does have hair thinning too, although the oncologist says itās the tamoxifen even though itās listed on the list of side effects for the abemaciclib. I only wash my hair once a week with a caffeine shampoo and use hair oil. I do have some growth but it does come out during washing, not massively like chemo but more than normal. Iām just coming to the end of 2 years on abema and my hair has thickened, itās just been really slow xx
Hi Sprout, 
Thank you for your response. I hadnāt realised there were several forms of the Kisqali meds! So youāre saying, that your hair has thinned over the past two years but is growing back nowā¦? Was the thinning all over, or mainly in certain areas, mine seems to be going at the templesā¦
I have bought some caffeine shampoos and some Regaine for women, so will start using them. I tend not to overwash my hair, and now Iāve cut it short, I donāt even need a hairdryer, or heated products, so thatās a plus.
How have you felt in yourself over the past two yearsā¦ can I brain burgle you for what side effects you have had please. Iāve just been told I need another week off the Ribociclib as my neuts are at 0.7. Have a very low mood this weekā¦ itās helping responses from you girls 
much love and thanks Melanie x
Hi again DeeBee,
Could I ask how you have felt in yourself over your time on these meds pleaseā¦? Muscle pain, joint pain, the hair loss, any weight factors, mood factors, anxiety ā¦ ? Even after two cycles I feel like a squashed anxious version of myself and I am normally bubbly and outgoing.
I have my bloods done again today after two weeks off the ribo as my neuts were so low and they are even lower this week at 0.7, so Iām being kept off for a third week!!! Did you have this immune system problem? Iām terrified to touch anything. Iām not allowed to touch raw meat without gloves, or my chickensā¦ etc etc very low mood going on hereā¦. 
Information is so useful much love and strength m xxx
So, I had chemo but didnāt cut my hair a d wore the cold cap. I lost hair during chemo feom my parting and had a bald patch right on top (a bit like a monk!) My hair was starting to recover when I started the abemaciclib. I mainly had thinning where I had previously lost it during chemo, it still comes out when washing hence why I now only wash it once a week. It does not come out as much as chemo and as I say, it is finally starting to feel a little thicker on top.
As for sude effects, I have been fairly lucky. The main side effect on abema is diarrhea, so that made me really nervous! For me though Iāve only really had a couple of bouts. I have had the odd extreme stomach cramps though. I donāt know what the advice is for ribociclib but abema is taken 8 hours apart and I find if I take them closer than 11 hours apart, I feel really ill - akin to chemo. Abema adjuvant therapy is only taken for 2 years, so I am near the end. I had bloods done every 3 months before picking up my next 3 cycles, I asked if they check again at the end and was told no and my bloods have been āunremarkableā anyway 
my neuts did lower while on chemo but I still managed to stay within the acceptable levels. I am still working full time (Iām 47) as a postie and horseride 3 times a week. I donāt know if that has helped or Iāve just been really lucky. I know it sounds crazy but, I actually worry that Iāve had it too easy and the meds are maybe not working as they should. I have already had 2 post op mammograms and an ultrasound. All was clear soā:crossed_fingers: all is well. Sorry for rambling, let me know if you have any other questions xx
Yes!! 
Iāve had the extreme stomach cramps, but no āfollow upā if you know what I mean ā¦.
It sounds like youāve coped really well and I LOVE that youāre a postie! Hereās to you and your shorts 
! Perhaps your exercise has helped you, I just donāt have the energy and everything hurts! I take my hat off to all you girls who have jobs or children to deal with too. Iām so lucky having neither at home, all grown up!
Iām glad to hear your hair is coming back and strengthening. Did you use any toppers, or wigs, or just get on with it? Iāve got a weird shaped head, in that scarves just slide off, so I canāt so that whole hiding it beneath a chic silk scarf thing.
Well I think you are in credible and thank you for sharing some of your experiences through your cancer journey. Itās all interesting to me, just to build up knowledge. m xxx