Abemaciclib Verezenio side effects

Jenni22

Hi Ladies,

I have recently started on Letrizole/Hormone Therapy, and Verenio / Abemaciclib and am struggling with the side effects.  I am in the fortunate position in that both these drugs are being given as a preventative measure.  I don’t have Mets, but am at very high risk of re-occurrence. 

Originally diagnosed with bi-lateral early breast cancer back in March 2023. Had a small 1cm triple negative tumour, and a larger (5cm), more aggressive (grade 3) oestrogen positive tumour with lymph node involvement. After initial breast reduction to remove both tumours and additional auxiliary clearance, I had 6 months of chemo, plus radiotherapy to both breasts. I managed to keep fairly positive throughout these treatments, and while at time a struggle did manage to work albeit at reduced pace throughout.  

Just as I finished radiotherapy my oncologist recommended  abemaciclibb as part of a trial that is showing reduction in recurrence rates of around 6%.  I’ve only been on these for 5 weeks, and while the side effects are manageable, they are not a lot of fun - diarrhoea, fatigue, vertigo, and just generally feeling unwell. Hot flushes and insomnia with the hormone therapy which again are manageable and on their own no big deal, but the combination has me exhausted.  I was soooooo looking forward to end of my active treatment and getting some energy back, getting back to working full time aswell, but now with two years ahead of me on this regime, I am wondering if it is worth it.

Oncologists reluctant to reduce dosage and are keen for me to stay on the Abemaciclib, but I’d love to hear from anyone else is in a similar position and how you are managing the pros and cons of the treatment options versus quality of life, and from anyone who’s been on Abemaciclib for a while to know if side effects improve over time.

Thanks
Jenni

arpie

Wishing you all the best @Jenni22 ....

I didn't have chemo but hope that the trial works for you xx Sometimes it is tough, but just keep telling yourself it is the magic bullet to prevent recurrence xx
 

MrsMorrisey

I have been recommended Ribociclib as an option if I choose to not do chemo. But it is a chemo drug. After reading the booklet it doesn’t look very pleasant. 

Originally meant for metastatic cancers they have researched it may be good for reoccurrence. 

The good thing with all these tablets is you can stop before too much damage is done hopefully. 

It only anybody knew what to do. Specialists are experts but they don’t know everything.The thing is our cancer may return with treatment or it might not. 

Does your head it trying to work it out. 

Jenni22

Hi MrsMorrisey,

Thanks for responding.  The Ribociclib is a similar drug to the Abemaciclib.  Both are chemo drugs, and both are recommended for high-risk re-occurrence cases.

I was initially told I'd have just 12 weeks / 4 rounds of chemo, but then my oncologist encouraged me to do 20 rounds of dose-dense chemo.   I did do the full 20 rounds, although needed a dose reduction near the end to manage side effects.  So was upset to then be told they recommended another 2 years of chemo treatment albeit just in tablet form. 

It's just so hard to know whether all this 'insurance' treatment is worth it, particularly over such a prolonged period.  Definitely does you head in you say!

Sckande

I am in my late 40s, diagnosed in February 2022 - 7cm tumour left breast, 4 positive lymph nodes. I had chemotherapy (4 x AC and 12 x Paclitaxel), breast reduction surgery and radiation (16 boost doses). Started Zoladex in August 2022, Letrozole October 2022 and Abemaciclib January 2023. Changed Letrozole to Tamoxifen in May 2023 due to my thumb spontaneously dislocating. Changed back to Letrozole in March 2024 because oncologist believes Abemaciclib works better with Letrozole and we will monitor the effects on my thumb. Diagnosed with Lymphoedema of the hand January 2024. Diagnosed with osteopenia of the spine April 2024.

I believe Abemaciclib is not widely used in Australia because of the cost. My oncologist would not have recommended it for me unless I was able to get on an access program, which I did.

Side effects:

• Diarrhoea: initially but settled after 6 months. Gastro-stop used intermittently.
• Nausea: settled after 12 months.
• White cell count: increased to normal after 12 months.
• Reduced kidney function: test results show reduced kidney function but oncologist says it’s a pathology error - function is not actually reduced and test results will improve when I stop Abemaciclib.
• Low vitamin D/hyperthyroidism: taking Caltrate (Bone Health) and extra vitamin D.

I know of two people on Abemaciclib. One stopped after a few months, one is still on it. The first one stopped because they didn’t like the abdominal side effects.

Overall, I’ve been happy with Abemaciclib. I mask and distance at work, and my colleagues mask during meetings with me. My job does not allow me to work from home. I avoid crowds and stay away from people who are sick. I haven’t knowingly had COVID-19 and have kept up with vaccinations 6-monthly.

My oncologist describes Abemaciclib as the gold standard of treatment - if you had all the money in the world that treatment would buy, Abemaciclib is it (along with the other treatments I’m on).

Cath62

@MrsMorrisey and @Jenni22 just minor correction about ribociclib and abemacuclub.

These are not chemotherapy drugs. They can have chemo like side effects but the truth is that most people tolerated them very well.

These drugs are what they call cdk4 inhibitors https://myjourney.org.au/article/1864

They are usually used for people who have metastatic disease however some studies show it is helpful for those with early breast cancer who reoccurance chance is very high. It seems using it for early breast cancer is relatively new. 

I have mets and am.on ribociclib and its tolerated well. I live a reasonablely normal life. I am on other treatment. At the time of my early breast cancer these cdk4 inhibitors were not available unless it was mets. I wish they had of been. 

Jenni22

Thanks @Cath62 and @Skande for sharing your experience with Abemaciclib and Ribociclib.  Sorry to hear you have Mets Cath, its a timely reminder to be grateful I have the option of this treatment to reduce the risk of a recurrence.   I’ve had a break of a month on the Abemaciclib and have been on a reduced dosage 100mg twice daily for 3 weeks now, pleased to say I’m feeling so much better.  The diarrhoea is now a rare occurrence and I have a lot more energy.  For me the fatigue was probably the biggest issue, so relieved this has improved.  Good to hear some of the other issues improve after 12 months aswell.  My red and white blood counts are low but not a major issue to date.  

Tri

Hi @Jenni22 thanks for sharing this thread, the question “Is it worth it?” seems like one many of us ponder quietly. This thread and the generous responses are very helpful for anyone (like me) still coming to terms with the unexpected interruption and impact that a breast cancer diagnosis can have and the reality that this can extend beyond ‘active treatment’ phase. It has reminded me what a gift it is to have treatment and recurrence prevention choices and I am so grateful to everyone - like you - for participating in trials, research and clinical treatment. By voicing your experience I believe it really advances the research and hopefully improves quality of life for everyone taking these medications and living with cancer or a risk of cancer recurrence. A big thank you. 

Katie46

Hi all, I met with my oncologist today and was told I am very likely to be prescribed abemaciclib as part of my hormone therapy as I had grade 3 cancer with 1 lymph node involved. He said it was now on PBS and showed good results for helping to reduce reoccurance. He mentioned potential side effects, but said most people tolerate it ok, it would reduce my immune system very slightly, nothing like chemo, and I could lead a normal life and to just try and avoid actively sick people. I'm happy to give it a go, anything to stop this coming back is worth trying. I have another appointment in 8 weeks, after I finish radiation treatment. I feel lucky to live somewhere this is all available to try.

Erko_Girl_68

Hi, everyone. I am also at high risk (hormone receptive, Stage 3A 7 cm tumour and three lymph nodes involved) for mets and started taking Verzenio last month as well as Anastrazole. My oncologist was initally reluctant to reduce the dose and I struggled with diarrhoea and horrible stomach pains for ten days on 150mg twice a day. I kept a food and symptom diary for ten days and used this evidence to tell my oncologist how many times a day I went to the bathroom and how bad it was. My records convinced her to reduce the dose to 100 mg twice a day. I cannot believe the difference the lower dose made to my life! You will still have a good chance of reducing the risk on a lower dose (according to my oncologist). I felt like I had to spell out the side effects in a very clinical manner, though, because my oncologist needed to report these records to change the dose. I am glad it worked out for you @Jenni22. I also found a list of foods with low and high fibre and used a fibre supplement to bulk up my poo. I visited a Dietitian as well, which has helped with the nausea and low appetite. 

melways

I'm on abemiciclib for Mets and was on 100mg for 2 months and was doing really well. Increased to 150mg was ok for one month then horrible diarrhoea every day for the next month. Thankfully as soon as I reduced back down I have no issues again. So definitely worth trying a lower dose if you can and thankfully in my case everything seems to be responding well on the lower dose. Quality of life and living a healthy life I believe is important and I found on the 150mg I couldn't eat well I couldn't exercise, sleep was disrupted etc and I don't think those things are beneficial in fighting cancer. I'm now back to eating and exercising and sleeping much better on the 100mg. 


Good luck and hopefully everything has settled down now

deekay77

Hi everyone - thanks for all of this information. I have had a recurrence (grade 2 - no lymph involvement), 4 rounds of chemo and 25 rounds of radiation. I am currently on letrazole (although we are keeping an eye on my ovary function to make sure it doesn’t recover post-chemo) and I will soon start Verzenio. I am really nervous about it. I am tolerating the letrazole well so far (week 2), but I did find out that I have osteoporosis in my lumbar spine and osteopenia in my femoral neck. Sigh. I’m 47. Anyway - I’ll try the Verzenio and see how I go. I’m really grateful for all of the above -information - it means I will be more alert to side effects, because I assumed that the abdominal issues/diarrhoea would present quickly and then subside…from all of the above, it seems I am in for a potentially bumpy few months. 

Thanks again!

Katie46

Hi @deekay77, my body didn't tolerate the 150mg x 2 daily, and it never settled down, just seemed to be getting worse. My oncologist said it does settle down for most people. I was given a break of 4 weeks and started again at 100mg x 2 daily, and it has been fine. The side effects I had at the higher dose almost completely disappeared, I very occasionally get stomach issues, much milder than before, and decreasing over time. 1 gastrostop fixes it. No other side effects so far. I've been on the lower dose for 4 months. 

deekay77

Thank you @Katie46 - I haven’t been given any information about what my options are if it’s intolerable. I don’t even know what dosage I will start on, but the 150 twice a day seems to be standard starting point. I just want to be able to go to gym and be relatively normal, so fingers crossed! 

Paris_24

My experience with Abemaciclib is similar to @Katie.  Started at 150 and was tolerating for a few weeks then had extreme diahorrea and unknown to me was anemic (not related to iron but the medication) I thought I was just unfit after the year of treatment.  Ended up with a blood transfusion and bags of potassium.  Oncologist dose reduced to 100 mg which has helped.  I do find if I start new medication, recently on Veoza for menopause symptoms, I had half a day of an upset stomach.  This has settled now.  I recently had ovaries and fallopian tubes removed with immediate paws symptoms, while it has been a week on Veoza, no more zoladex.  I am also on letrozole.  

deekay77

Hi again - have any of you experienced hair loss/thinning with the combination of letrazole and Verzenio? I just saw my prescription and it looks like the doc is starting me on 100mg, but only once per day?