I am about to start target therapy (Abemaciclib) and im just after support and advice.
I waa diagnosed with ER positive right side breast cancer in May, one positive lymph node. Ive since had a mastectomy with diep flap reconstruction and auxiliary node clearance, followed by 3 weeks radiotherapy which i finished in November. Since then i have started hormone treatment (letrazole, abcal and ibandronic acid daily plus monthly zoladex injection). Seems alot when I write it down!
Anyway reading on here, lots of you are saying how bad the side effects are to the target therapy. How do people manage their everyday lives? I work and have a 4 year old - is anyone in a similar position that could offer some advice please? I can work from home but this is not really a long term solution due to the type of work i do. I even started thinking about handing in my notice because i feel such a burden. Did any of you find foods that helped or made things worse? Did the side effects happen straight away? Any advice would be wonderful. Thank you so much xx
Hi elsa77,
I’m sorry you are having to go through this treatment. It must be so difficult with a young child and I send you my best wishes.
I commenced Abemaciclib in October. I’ve completed 3 cycles and I’m presently on a weeks break because of COVID. My experience has been far better than I feared. I did have more problems during the first cycle, but I have found loperamide very effective. I only take 2mgs ( 4mgs made me constipated). The abdominal cramps have also improved. I take kefir daily and I feel this probiotic has helped. I am still on 150mgs and will be returning to the hospital on Friday to collect a 3 months supply.
I had a 25mm cancer, grade 3 with 2 lymph nodes affected. The data from the Monarch E trial appears to show this drug is reducing recurrence. Prior to commencing Abemaciclib I was also anxious about the side effects but so far it hasn’t been as bad as I expected. I’m not going to say it’s a “walk in the park”, but I feel the side effects for me are worth enduring, considering the potential benefits.
Two year seems to be a long time to be on this medication, but I’m trying not to think too far ahead. I think many of us have had your concerns prior to commencing Abemaciclib. I hope you cope well .
I am on my 11th month of Abemaciclib with Letrozole and I have found the side effects very manageable. I found at the start that I would need rush to the loo but what works for me is to not eat 2 hours after taking the tablet and avoiding eating too much of certain foods such as certain vegetables. However I know that others have found other things work for them. Also if the side effects are v difficult the dose can be reduced without affecting efficacy. I manage to work full time on the max dose and carry on as normal. I am glad to be on this drug as the results are very positive.
Hi Shade,
Im sorry you’re having to go through this too. Thank you for your kind words, and for taking the time to respond.
Im pleased that you’re managing ok, you certainly have help to make me feel ready for the next bit!
2 years does seem like a long time, but in a blink on an eye it’ll be gone - not that i wish my time away!
Like you’ve said, it is amazing that they have these types of treatments and medications available to give us the best chance, i am vwry grateful for that and certainly want to at least give it a go.
Thank you again, all the very best x
Hi Bookie,
Thank you so much for your advice and for taking the time to reply. Your advice from soneone who’s in the midst of it, is really helpful and has given me reassurance. Thank you.
All the very best to you x
I was previously on Abemaciclib for over 3 years, initially I did have diarrhoea but my oncologist reduced the dose and managed very well. You will get to know your own trigger foods and learn to avoid these at certain times of the day, but I had no problems whatsoever on this medication hopefully you will find your balance with it also. After being on the drug for over 3years I was reluctant to give it up but my cancer progressed slightly two more hotspots on my spine Dam!!!
So I am currently on Faslodex injections, Prostap injections Denosumab injections and due to start Piqrey tablets hopefully all goes well for the next few years. Make sure you stay hydrated on the Abemaciclib due to the initial loose stools xxxx Take care hope that helps xxx
Hi. I started on July 2022 and am due to finish in July 2024.
I’ve found it fine so far. I have an 8 year old and 11 year old who were 7 and 10 when I started and I was apprehensive about starting this drug too (having read about the side effects and was worried about getting through the 6 week half term).
I have diarrhoea every 2-3 days at the moment. 2 loperamide seem to keep it at bay. My hair has thinned slightly but is very thick anyway.
I am tired with the drug, but it’s manageable. I reduced my hours when diagnosed (I do work from home) and probably could increase them but am not ready to yet. I get ESA (in the support group) which works out about £6000 a year and you can get if you work less than 16 hours a week and earn less than a certain amount.