Help.
7cm tumour removed grade 2 er/pr positive HER2 negative. 2/10 lymph nodes after clearance,Post Menopausal . Oncotype test result 10, 2% recurrence, no chemo.
Oncologists has put me on radio, letrozole, zoldronic acid
Now said abemaciclib as well! Why?
It sounds horrendous . What benefit do i get for 2 years of hell???
Hi, I think we have all felt as you are now when our oncologist suggests Abemaciclib. Initially instead of being grateful I was being offered this drug I was p…ed. Unfortunately those who are offered this medication are because they are considered high risk of recurrence. Your tumour was over 5cm and you had 2 lymph nodes affected by cancer, therefore you have two features which make you eligible for this medication.
Presently I am on an enforced break from this drug due to a cold and then developing a chest infection. I can’t say being on this medication is without it’s challenges but if it reduces my chances of recurrence I’m all for it.
It is your decision and I wish you well no matter what your choice.
2 Likes
Thank you. I was under the impression it was 4 lymph nodes, it had spread to other body parts, grade 3, or larger than 5cm. That gives me 1 (which has been removed with all clear margins) doesn’t oncotype test come into it?
1 Like
Hello @kaz4
This is the link to the NICE Guidelines page where it details the various requirements for prescribing Abemaciclibiclib. 1 Recommendations | Abemaciclib with endocrine therapy for adjuvant treatment of hormone receptor-positive, HER2-negative, node-positive early breast cancer at high risk of recurrence | Guidance | NICE
Like you, I’ve been recommended to start taking this drug under the second set of criteria which is:
1 to 3 positive axillary lymph nodes, and at least one of the following criteria:
- grade 3 disease (defined as at least 8 points on the modified Bloom–Richardson grading system or equivalent), or
- primary tumour size of at least 5 cm.
My Oncologist was clear to remind me that not everyone gets all the side effects, so here’s hoping that we are some of the more fortunate ones.
Best wishes with your decision.
1 Like
@kaz4 I don’t know your personal circumstances but from my experience I was on Abemaciclib for 2 very long years but I also had 3 surgeries 6 months of gruelling chemo 15 radiotherapy sessions and 7 years on Letrozole plus Zoledronic acid (last infusion in October)…I’ve just finished Abemaciclib and am feeling kinda anxious as what is now killing the cancer cells and when I hear I question like that why Abemaciclib??? I feel sad because it helps keeping the cancer away that’s why…
I’ve got two kids and want to see them finishing university getting married I want to see my grandchildren that’s why…
Please accept my apologies for being straightforward but I am a person who tells it how it is …
7 Likes
Hi Kaz4, there is research if you fancy a google, but also speak with your oncologist. My understanding was that taking abemaciclib increases survival chances for the first few years at least, by a third. I hope you are able to get the info you need to make the right decision for you, best wishes xx
2 Likes
Hi @kaz4
My tumour was grade 2, 2 lymph nodes, 16mm
so I was offered onco test, like I said Letrozole but ibandronic acid nothing else was mentioned.
Can you speak to your BCN and see what she says?
Sending hugs
Xx
1 Like
Hi @kaz4 again. Here is the link to a paper published in the Lancet journal a very reputable one. It’s based on a 5 year monarchE trial. The PI of this trial was Prof Stephen Johnston from the Royal Marsden Hospital. If you can’t access it text me privately and I will send you a copy.
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(22)00694-5/abstract
We are ‘the lucky ones’ as our cancers are ER/PR positive and can be treated with a lot of drugs after finishing chemo like Letrozole, Tamoxifen, Abemaciclib, etc. A friend of mine was recently diagnosed with secondary BC and hers is triple negative and unfortunately, her prognosis is not good 
and her mets are growing bigger quickly…
2 Likes
@mun4o : Thank you for telling it as it is! I started taking Abemacyclib in March and it’s going to be 2 very very long years. The side effects are no fun but I’m hopeful it prevents recurrence or at least delay the recurrence and allows me to have some good years to live. I have stage 3 BC so for me it’s a no brainer.
2 Likes
Hi @marie911 thank you for your kind words. Mine was also stage 3 lobular BC with 3 lymph nodes involved. It was very big tumor 12.5cm so I was not going to take any chances when my oncologist told me about Abemaciclib. I’ve just literally finished the 2 years of Abemaciclib and am a bit worried and anxious but my oncologist is always telling me that I am on best possible treatment. They were two very long years with lots of ups and downs but you can always have a break or a reduction of the dose. The last 8-9 months I was on 50mg but it’s still working as it’s preventative for me. It’s an amazing drug no matter what side effects as women with secondary BC have their mets growing more slowly and it’s giving them more time with their loved ones…Sir Paul Nurse won a Nobel prize 
for finding these proteins and the Abemaciclib is based on them…so yes, resilience and perseverance…
Wishing you all the best with your treatment. Take care. xxx
1 Like
I am about to finish the two years of Abemaciclib. You are monitored well. I did have one dose reduction from 150mg to 100mg. This drug has had good results in prevention reoccurrence in high risk patients. All treatments to lessen reoccurrence I always take as good to give a try too.
Give it a try and see how you body reacts as It gives a good preventive treatment for stopping reoccurrence.
1 Like
Hello all,
I was diagnosed in may with secondary BC …I’m my bones. I was started on fulvestrant targeted hormone therapy injections 3 within 6 weeks and now every 4 weeks. I started on abemaciclib 4 weeks ago. I haven’t found it too bad. Running to the toilet only happens sometimes, not every day. Immodium helps when it happens. I have found since going on fulvestrant that my hair has started thinning and I’m concerned that abemaciclib will increase this. Did anyone notice this side effect?
1 Like
Yes, Abemaciclib definitely thinned my hair - bit frustrating as had only just started re-growing after chemo! Had very bad diahrroea and couldn’t stomach (literally) Immodium, so gradually reduced dose to minimum, 50. Now, 6 months on, hair noticeably improved! So there IS hope!
3 Likes