Difficult decision

Hi 

I am 67 and have had a very similar experience to you. I was diagnosed a year ago and had surgery, chemo, radiotherapy too. I have been on letrozole for four months now and have had very few side effects at all . My legs were a bit stiff at the beginning but much better now. I also have the zoledronic infusions every 6 months and haven’t had any effects. I’ve now been put on Ribociclib which I'm assuming is the same family of drugs as yours . Have had one cycle with no problems apart from a few minor headaches . Like you I read the list if side effects and was very nervous about taking it but so far am feeling fine. The hospital monitor me every fortnight which is great and they’re happy with everything at the moment. I know everyone reacts differently but just wanted you to know that it can be ok. Good luck and make the decision that’s right for you. X 

Hi there

I am 52 and have just went through 8 cycles of Chemotherapy and a lumpectomy. I am just about to start 19 sessions of radiotherapy. I have also been offered both of those drugs however I haven't started them yet. My personal preference and opinion is that I am going to listen to the experts and take whatever they are recommending. I am acutely aware that I might get recurrence and I want to do everything I can to stop that happening. I have read loads about these two drugs and I have decided to at least give them a go in the hope that the side effects will be manageable, if not then I will discuss with my oncologist to see if there is anything I can do to help the side effects or whether they are too bad and I come off of the medication.

I am going to give it a good go!

I wish you all the very best xx

Hi there . 

I have had similar treatment to you following a bilateral mastectomy and node removal earlier this year. I'm 52.

I have now been on Anastrazole for 3 weeks, about to have my 2nd Zoladex implant (I'm peri-menopausal), have had one infusion of zolendronic acid so far, and am nearly 2 weeks into 2 years of abemaciclib.

I was also worried about all the side effects I'd heard about, especially from the abemaciclib.  But, so far, apart from a few joint aches, the odd headache, tiredness and one incident of  after a rich meal, I've found it very manageable and nothing like I'd read about. 

1. After the zolendronic acid, I had a couple of days of feeling a bit ropey, but again, just took it easy and kept up regular paracetamol for a few days.

I'm managing the joint aches by going for a walk or doing some stretches, which is helping me.

I'm definitely feeling a lot more positive about it all now...I hope your experience is the same.

Take care x

Hello 

I had the same diagnosis as yourself 5 out of 13 lymph nodes were effected.Diagnosed in Dec 2024 .Had surgery 6 rounds of chemo 20 rounds of radiotherapy and now on anastrozle  with minimal side effects .But I was offered abemaciclib and encouraged to take it to help with the reaccurrance .

I question my chances after having all the other procedures and meds but listen to them but so far I have had horrid side effects diarrhea pains in stomach nausea  headache and generally feeling like rubbish.!!

I have been on them 3 weeks now but I am seriously considering stop taking them .The nurse has said they can reduce the dose to 100mg  .I gave had bloods noe waiting for them to pho r me. But I have had enough and seriously considering taking my chances .

It's a personal decision but I want to get back to do e kind of normality and not spend the next 2 yrs worrying about were the next toilet is and feeling rough.zGood luck on your journey x

Thank you so much for your response and it all sounds really positive. Apparently ribociclib is not the same as it has different chemical structures and side effect profiles?

If I go for them, I hope I am as lucky on them as you seem to have been. All the best for the future.

Hi Vonnie22, thank you for your reply. I know what you’re saying, I swing in between that and what’s the point of living longer if you have no quality of life? I’m finding it really difficult to make a decision. The problem with the zoledronic acid is that it takes two years to leave the body so if I am one of the unfortunate ones, the damage is already done. With the abemaciclib, I think I’m on the same page as you and will probably end up trying it to see how it affects me.  

Sending you my best wishes for the future.

Hi NicW, Thank you for your reply. Sounds like everything is going positive for you which is great news. I have an appointment with the dentist regarding the zoledronic acid next week so I’ll see what he says. As for the abemaciclib, I’ll probably end up trying it to see how I get on.

Sending you my best wishes for the future.

Hi Flossyknicks, thank you for your reply. I am so sorry to hear you are having a rough time. I know the side effects can be really bad for some. I have read though that with time they can improve, maybe if you reduce the dose and a bit more time you’ll start to feel better?

I have researched these meds to within an inch of their life and I’m still struggling to decide.

Sending you my best wishes, hope you manage to get sorted 

Thanks for your reply  my nurse has phoned me today told me to stay off for rest of week and I will have a consultation on Tuesday with my consultant and maybe reduce the dose ?  I will see how it goes .I had side effects Ruth the chemo but after 4 days I was fine and I managed really well .I'm not a quitter in any thing but this has certainly set me back .

Good luck x

I’m currently 18 months into the 2 year prescription of abemaciclib and nearly 2 years into a 5 year course of letrozole. I’d had my small tumour removed, 6 months of chemotherapy, lymph node clearance then 19 sessions of radiotherapy. I was expecting a prescription for something like letrozole and didn’t think much about starting it, but  I have to admit I was horrified when I read the leaflet the oncologist gave me about abemaciclib. The cancer was small and the surgeries removed it ‘with clear margins’ but it was aggressive, grade 3 presenting a high risk of recurrence. I just decided to try everything suggested, so that I would not have to wonder whether any future recurrence was down to something I’d declined. 
All my treatments have been better than the potential scenarios painted by the side effect leaflets however. The abemaciclib did feel impossible when I first started it, but my symptoms settled down a lot. Letrozole didn’t really affect me much in the months I took it before starting the Abemaciclib and I’m hoping when I’m back on it alone, that will still be the case. I am glad that it’s the letrozole for 5 years, however snd not the abemaciclib!

I’m 71 now and it’s seems like a long time since I was diagnosed in early March 2023. I was lucky in that I didn’t have any other health conditions to be taken into account and had been through menopause and quite lucky that I’ve felt any symptoms to be tolerable. Some people do report very few symptoms though! 
I had retired from teaching and have been able to walk around etc then rest to make myself feel better, so that’s helped I think.

My advice would be to give these a go and see how you get on. You get reviewed every month when you start abemaciclib, so can report how you feel alongside the evidence from blood tests.

All the very best with your continued treatment. Reactions are very individual and decisions very personal to each of us. xx