Hi there,
I’m undecided about taking abemaciclib. Diagnosed stage3, 4 lymph nodes diseased, had a single mastectomy, chemo and starting Radiotherapy soon.
Will be taking Letrozole for 10 years.
My oncologist spoke to me today about taking abemaciclib.
I’d never heard of it before.
Although it’s not chemotherapy it very much sounds like it - Monthly infusion, Monthly blood test ( would I need a Picc line again? I didn’t ask), reduced immunity. Similar side effects to what I had during chemotherapy and for 24 months
Sorry if this offends anyone.
After surgery, chemo, radiotherapy and knowing I’ll be taking Letrozole and the bone injections i feel like ‘Is that not enough’!!
I just feel that I can’t deal with this aswell for 24 months.
I want to get on with my life, travel etc.
I can’t bear the thought of being tied to the hospital and the house again for 24 months… the Chemo was 4 months and that was bad enough.
Am I terrible for saying this?
I just felt like I was getting somewhere and now it’s feels like the treatments are never ending.
Did anyone else feel like this?
As I only found this out today it’s sent me into a bit of a tailspin so would welcome any advice anyone can give and if there’s anyone who decided not to take it.
@strawberrytart29 - your feelings are valid. I am Stage 3, Grade 3; 7 lymph nodes diseased; single mastectomy. Started Letrozole in Oct 2022. I finished Radiotherapy on March 8, 2024. After radio, was told to start abemaciclib tor 2 years because i am high risk for recurrence. Like you, I was extremely reluctant and was told by onc that taking abemaciclib would add a 7% benefit. I guess 7% is better than nothing, so reluctantly, I agreed as I would feel so guilty if I declined. I started 150 mg, 2x daily. On the 7th day, diarrhea kicked in. I had stage 4 diarrhea. Dosage was reduced as a result to 100 mg 2x daily; thankfully diarrhea subsided. You got that right. WBC dropped drastically; so I am living with reduced immunity; blood work every month to monitor liver/kidney function… (no PICC line required). Absolutely agree with your sentiment: “Is that not enough” because i was diagnosed with osteoporosis. Had my first zoledronic acid infusion on May 11. Don’t be too hard on yourself. You are entitled to feel what you feel after having been through so much. be kind and compassionate with yourself.
Hi @strawberrytart29
It is very hard to know what’s best as each of us individual but I will tell you my story…
ER positive, HER2 low, 2 positive lymph, started on abemaciclib, now on cycle 15 out of 24.
At the start, I had monthly checks/bloods for 3 months only, then onto 3 monthly checks.
Abemaciclib is tablets taken at home, twice a day, normally 150mg dose but this can be paused if symptoms severe or dose reduced to 100 or 50mg.
I won’t lie, the diarrhoea has been challenging but hopefully you will find a pattern or things that work for you. My team give loperamide to take if needed and I find they do work.
I have had to find toilets quickly, take loperamide sometimes as planned preventative, wear a thin pad if I am going somewhere important and worried about toilet situation, hung up on telephone calls if I need to go and don’t want to explain why (easy to call back later and blame reception). I’ve even had to break into toilet roll holders when I’ve needed to wipe but there isn’t enough paper to grab the end.
If you do start, I recommend always carrying a pack of tissues, a few wipes, spare pants, plastic bag until you find your patterns.
BUT ON THE OTHER SIDE
there are many days I don’t even need to think about it because it’s not a problem.
I was determined to take anything that could extend my life or the time before recurrence so I have persevered on full dose. I lost 12kg in first 6 months and oncologist wanted to reduce but I negotiated a high calorie diet, eating more often which steadied my weight and allowed me to continue.
My white cell count and neutrophils have gone down from starting point but still safe levels. I don’t take silly chances but mingle, go to shows, travel on tubes and planes, holiday, work in a hospital and no infections.
For me, it’s about balancing and finding a way for me to take the meds and have a good life.
Whether to take the meds is completely up to you, depending on your feelings/priorities. I completely understand why anyone may not want to take this drug.
Maybe ask for more info? Would it be an option to have more thinking time before having to start? Speak to your nurse some more? Search abemaciclib on this site to get more opinions? Is it worth trying to see how it affects you then decide to reduce/stop if not right?
Good luck in your choice
Laura
Here is a thread I started my treatment in June 2022…I am almost done…last cycle this month…yay…
I was diagnosed with very advanced and invasive lobular cancer stage 3, 3 positive lymph nodes. My was lobular BC and the chance if recurrence in the first couple of years after finishing treatment (I had chemo and radio) is very high my oncologist said so he offered me Abemaciclib…and I said yes…
A lot of ups and downs but it’s something I had to do…take it for my kids. It’s such a personal decision. For me there wasn’t a question shall I? I just went ahead…there was a point I was a prisoner in my own house because of the diarrhoea and stomach cramps but you can have reduction of dose and also breaks…
Hi, I have trod a similar treatment route to yourself and I’m on my 9th cycle of Abemaciclib. I’m still on 150mgs twice a day and as mentioned previously it is a tablet. Having a 7% reduction in metastasis this is better than chemotherapy and that was the reason I accepted this treatment, although when offered it by my oncologist I wasn’t happy about it.
I found the first month was the worst for the diarrhoea and from reading others post my side effects haven’t been too bad. I manage diarrhoea with loperamide. I have read that Abemaciclib reduces hot flushes, reduces our weight or keeps it steady and I sleep well at night as it does cause fatigue, but I’m getting on with a normal life. My white cell count is a bit low but my neutrophils are hovering around normal as is my Hb . After a few months if your bloods are ok you may only need to visit the hospital every 3 months for bloods. Abemaciclib is an expensive drug, the NHS has managed to get it at a reduced rate but it still costs them £3000 for a 28 day supply of 150mgs so I feel fortunate now to be offered this medication. I wish you well with whatever decision you take.
@Siggi@shade : may I ask what is this 7% benefit you both mentioned? what does that mean?
I have a stage 3 BC, 7LN positif and I’m ER/PR positive. My oncologist prescribed me Verzenio bc I’m high risk of recurrence. what I understood is that studies show that verzenio in addition to letrozole gives you approx 30% additional chance (compare to letrozole alone) not to have a distal recurrence. Are you taking AI as well? What am I missing?
Hi it’s all down to how you represent the data mathematically. The risk of recurrence in high risk breast cancers in the first 5 years is about 25%. If Abemaciclib reduces the risk by 7%, then 7% of the 25% is how they come to the 30% figure. I don’t have the exact percentage for recurrence in high risk cancers in the fist 5 years but it is about 25%. Well that’s how I interpreted these figures, if I have it wrong please someone correct me.
@marie911 this is what I was told by onc. According to a study, those who only take letrozole have perhaps 80% (can’t exactly remember the percentage so apology if mistaken) however, the point is whatever is the percentage chance of cancer not returning if on Letrozole alone, add 7% to that number.
Check a paper published in the journal of clinical oncology about the Abemaciclib from a very prestigious professor Stephen Johnston at the Royal Marsden if you want to see the numbers…it’s based on the MonarchE trial
Well, I was diagnosed with BC in Oct. 2023, mastectomy Nov.2023,radiation Jan. 2024-24 sessions, anastrozole Feb.2024 & now verzenio April 2024, 150mg twice a day. My struggle is with the side effects from verzenio- fatigue,diarrhea,loss of appetite, vomiting & the awful change in taste with everything I eat. I need some suggestion on foods to eat.
I can tolerate white bread & cream cheese, apple sauce & chicken broth. I can’t deal
with change in taste buds. I can deal with the other side effects.
Just a quick mention regarding horrible taste buds, you say you dont like apple sauce etc because it all tastes terrible. I had the same issue whilst and still do take abemicilib 100mg x2 daily. I drink apple concentrated juice, it sure worked for me. Im 9 months into treatment for sbc and have found my taste buds have returned to normal. Worth a try, best wishes to you
My oncologist told me that she was expecting patients to be really bad with side effects based on the studies and surprisingly everyone getting on very well on this drug and there are a lot on the drug. My own opinion is the stats are really strong against recurrence and I am much more scared of a recurrence as opposed to a side effect. Also there is so much they can do now to manage side effects these days. If you can’t tolerate it they will reduce but worth trying it as you could be that person who doesn’t have side effects!
Hi, I have to make a hard decision for me, whether to take Verzenio (Abemaciclib) with letrozole or no….im on stage 2 with 2 lymph nodes, 69 years old, not in very good fit, and im afraid of side effects…Has anyone had a relapse after treatment with Verzenio? I think it can help me to make a right choice for me. Thank you.
Hi there,
I am due to start this drug. I too was fearful of side effects but the results are so positive I will certainly give it a go! Also to add some reassurance my oncologist was also fearful of side effects before recommending to patients however she has been pleasantly surprised at a large group of patients on this drug that are doing great on it. I would always be of the opinion that only people with negative side effects post on forums and not trying a drug because of these side effects is only hurting yourself. It costs nothing to try it and see how you get on. If it doesn’t suit well at least you gave it a go. Remember it could save your life! I think that what you do to negate the side effects helps like supplements diet and exercise. I will let you know how I get on.
Hi. This is the first time I have reached out to any forums or support networks since i was diagnosed with invasive ductal carcinoma, grade 3 stage 3 in Jan 2024. I have a little baby who was 7 months old at the time and I’ve had my chemotherapy cancelled after 5 cycles due to the toxicity causing me to become hospitalised quite often. Im now on daily tabs of anastrazole with monthly goserlin injections. Radiotherapy is starting in Nov due to wait lists. I am due to go onto abemaciclib soon and I am dreading it. I wanted to ask if anyone has decided not to take it and whether there are other options?
Hi there,
I am due to on abemaciclib too but for me I am more scared of having an allergy or my body not coping with it. Reason is the results are so good and there isn’t anything like it. My oncologist however said all the patients were coping very well with it and not experiencing anything like the side effects they prepare you for. You could have zero side effects or you could have some but why don’t you see how you go before not choosing it. My dread is a recurrence and I will try anything to prevent getting a further diagnosis.
Best of luck
