Verzenio blues

Erko_Girl_68

I am in early stage B/C and have a high risk of recurrence (7 cm tumour in breast, 3 affected lymph nodes, 27 removed from armpit, hormone positive, Stage 3, Grade 2). My oncologist was going to put me on Ribociclib/Kisquali (3 years) along with Anastrazole (10 years) but then Ribo was recalled:

https://onlinenetwork.bcna.org.au/discussion/26491/early-access-program-kisqali-ribociclib-for-ebc#latest

I was bummed because I read a bit about Ribo and understood the side effects. My onc recommended that I go on Abemaciclib/Verzenio for two years. Funny enough, I had been in a support group a few days earlier with b/c ladies and a McGrath Nurse and everyone was talking about how rough this drug can be on your gastrointestinal system. 

My onc started me on 150 mg twice a day and their advice was to take loperamide (they said I would still have diarrhoea regardless). After ten days of cramps and daily diarrhoea, ranging from once to four times in one day, I advocated for a dose reduction to 100 mg twice a day. I have been on the reduced dose for three weeks, and I have experienced one extreme to another, diarrhoea or constipation. If I have the D, and take loperamide, for the next three or three or four days I have had constipation and have had to use a microlax/enema. Some days, I have constipation in the morning and D in the afternoon! Most days, I have stomach cramps ranging from mild to severe, where I am incapacitated for an hour. I have tried keeping a diary of my diet and my bowel movements to see if there is any pattern. I have seen a Dietitian specialising in oncology and used loperamide and a daily fibre to bulk my stools. Nothing I have done has made any difference because I have not had a normal bowel movement for the last month I have been on this drug. I have lost a lot of weight and having gastro-like symptoms just wipes me out with fatigue. Today, I am feeling 'Is it worth it?' after a morning spent lying on the bed with stomach cramps and D x 2. Verzenio has recently been added to PBS for ladies with early stage b/c and I wonder if there is anyone else in the same boat on this forum. 

Can anyone tell me how long the symptoms (diarrhoea/constipation/cramping/fatigue) last? My oncologist said the D lasted up to three months and then intermittently for two years, which horrified me. 

arpie

You are having a really hard time of it @Erko_Girl_68    Hopefully someone who's been on Verzenio will jump on soon & help you with advice.  Can the dose be lowered a bit til you stabilise?

Can you contact your Breast Care Nurse to chat with the Onc & hopefully get some sort of solution to your trots/clogged up issues?  

When hubby had diarrhoea from his chemo, he took Gastrostop/Loperamide with each loose motion & was lucky not to get the opposite clogging as well.   There must be something your Onc can do to limit those highs & lows  

take care & all the best 

Erko_Girl_68

Thanks, @arpie. I'm seeing my oncologist this week. She tends to respond to clinical information about the side effects, which is why I kept a diary. I had constipation from the anti nausea meds when I did A/C. I had no problems on Taxol. For me, Verzenio is worse than Taxol. Not many early b/c ladies are on this but hopefully someone will respond. 

Jenni22

Hi @Erko_Girl_68,   I have been on the Verzenio since January.  Similar to yourself I am at a high risk recurrence and was initially on a trial with the drug company before this was added to the PBS.   I found the fatigue much worse than the D.  Lasted 3 months on original 150mg twice daily before oncologist gave me a month off and reduced the dose to 100mg twice daily.  The D was much better on lower dose but and had some much needed energy back, but after another 3 months and contracting covid fatigue was again an issue.  (my white blood county has been affected much more than with the A/C or Taxol). I am about to start back on a reduced dose again after a month off and am not sure I will make the recommended 2 years, but aiming for at least a year.   I'm not sure it is just the Abemaciclib to blame for the fatigue as I am suffering with hourly hot flushes and vertigo from the hormone treatment, but I have a friend who is a month into taking Verzenio and has reduced the dose to try and improve fatigue and D.   Good luck, hopefully you tolerate the drugs ok.  Feel free to check-in.  It's rough going when you have already been through a lot, it's sometimes hard to know if it's worth continuing, I am taking in one month at a time.

Erko_Girl_68

Hi, @Jenni22. Thanks for contacting me. The Verzenio can be a rough journey especially after we had little time to recover from the in-hospital treatment. I am interested to hear about your experience, it hits us all differently, doesn't it? Getting COVID-19 on top of everything else is a bummer and would be hard on top of hormone blockers and Verzenio. Does that mean you are going to take 50 mg twice a day? 

Since I posted here, I lasted about two weeks on 150 mg, and about a month on 100 mg before my oncologist reduced the dose to 50 mg twice a day. I was pretty miserable with daily D and fatigue. I am coping better and would like to stay on it for two years (fingers crossed). I asked my oncologist for stats that indicated my recurrence risks, so I could make an informed choice. The lowest dose is more manageable but I still get bouts of D and fatigue. Did you find that things settled down a bit after three months? I am not used to being this tired! I am also taking it step by step. Good to hear from you and have a lovely weekend.