Anyone on Abemaciclib?

Hi, I'm ust starting my 3rd month, taking anastrozole along side. Had no chemo as low oncotype score but large tumour so at high risk of reacurrance..... Hoping this drug does its job!!!!!

Main side effects, diarrhoea, although controlled with tablets, & starting to improve with time, loss of appetite & reduced white blood cell count. 

Still on max dose 150mg, moving to monthly review from Dec which is good

Best wishes x

Hi Kitty

Thanks for your reply. 

I've had chemotherapy , surgery and radiotherapy and this is the belt and braces for me. I had quite a large tumour also, but unfortunately the chemotherapy was only 10-50% effective, so classed as not having worked. Shame you only find out after they remove the tumour.... I could have done without the Docetaxel cycle for sure.

Did the Abemaciclib reduce your immunity significantly? I don't really want to spend another two years hiding from germy people!

Heather 

Hi Heather, sorry to hear the chemo didn't have the outcome you had hoped for 

After the mastectomy I had 15 radiotherapy sessions, started abemaciclib 2 weeks after that finished

I've been told I'm at greater risk of infection so try not to go into busy crowded places, wear a mask etc..... I feel the same as you that I don't want to have to go into hiding so very conflicted.

White blood count recovered a little now at 2.8 & neutrophil 1.4, dipped to 1.1 at the beginning 

I hope you don't have too many side effects, I'm assuming you are having 2 week reviews?

Viv x

I'm not sure at the moment. The cancer nurse who did the assessment and gave me the medication, only gave me an appointment for a month's time to pick up the next lot. With a blood test for the day before.

I am seeing the oncologist tomorrow, so will see what they say.

xx

Hopefully you will get some more information tomorrow 

There is an existing thread about this drug created a few months ago, might be worth looking as other ladies have shared their experiences

Best wishes x

Hi Kitty,  your treatment seems similar to what I’ve been offered   

 I’m diagnosed early lobular breast cancer.  58mm tumour removed during therapeutic mammoplasty, then re-excision resulting in 3 more tumours 2mm 4 mm and 6mm.  Decided on mastectomy (had it 3 weeks ago)  path results clear.  3 out of 10 nodes infected.  Oncotype DX result was 17 so no chemo but going to have radiotherapy to chest wall and lymph nodes.

 I started 10 years course of Letrozole 6 weeks ago. I’ve been offered IV zoledronic acid every six months for three years and Abemaciclib for 2 years.  I’m so terrified of side effects that I’m considering declining them.  If the oncotype results revealed a low recurrence rate I’m wondering why I’m eligible for these treatments.  I’m so confused.  My diagnosis is early primary breast cancer. 

I have my radiotherapy planning appointment on Tuesday but don’t know when the other treatments will start.   

Hi, I can totally relate to being terrified & anxious, I've been the same all through my treatment, it's so hard not to get that way.

I had a 9cm tumour removed but during surgery the surgeon felt a nodule & removed it, it tested positive for cancer so a mastectomy was recommended. Another tumour 1.5cm was found, hadn't shown on scans.

I had low oncotype score so assumed I was low risk & not told any different by first oncologist. Started on anastrozole before surgery.

Saw new oncologist to discuss radiotherapy & she recommended abemaciclib. Very shocked. Long story but turns out that as main tumour larger than 5cm I'm high risk of a reacurrance.... Totally crushed as 6 months since diagnosis. (stage 3)

I believe the high risk is down to the large tumour having had chance to shed cells into my body that could turn into cancer. What is confusing is that chemo wasn't recommended but they tell me that it wouldn't have been effective for that particular tumor, but the oncologist says abemaciclib could be really helpful instead. 

I had the radiotherapy, 15, chest wall, & collar bone, after further discussion by MDT lymph nodes under arm not done as only 1 effected & wall not breached.

I started abemaciclib 2 weeks after radiotherapy. Had 1st Zoldronic acid infusion. 3 weeks ago. Same as you 6 months for 3 years

I have been so frightening of the side effects of these drugs & teatments, but probably more scared of a reacurrance & moving to stage 4. So I figured I would try what has been recommended & see how I get on, I could always stop. 

I hope you planning session goes well. Best wishes for the future, I'm sure with time to think things through you will be better able to make a decision 

Best wishes x

Thank you Kitty, Im sorry you have been through this too.  It’s the first time I’ve reached out to anyone other than my partner and I’m glad I did as I don’t feel so alone with my diagnosis.  What is so concerning is that  after being referred by my gp when I noticed skin changes,  I had mammogram an ultrasound scan and an MRI scan, NONE of which showed anything. It was only the biopsy that revealed it.  No wonder they call it the sneaky cancer. How can they find it with further mammograms to the remaining breast.  
Im going to ask for a further consultation as I don’t feel I was given enough information about my diagnosis or the reason for the treatment.  I still don’t know what to decide.  

good luck with you treatment, hope the side effects are  minimal.  Best wishes.

Hi, glad you did reach out on this site, hopefully it helps to know you aren't alone. 

Definitely ask for further consultation. I asked for a breakdown of what each element of my treatment plan gave me in % terms, although that may not be what everyone wants to know.

Happy to chat again if that helps

Viv x

Hey I’ve been on this for 5 months now for stage 3 with large tumour, managing the side effects ok and bloods have been borderline at times but feeling ok. How are you doing?