I’m 3 weeks into taking Abemaciclib. My consultant has a policy of starting people on 100mg and then moving up to 150mg if they are doing OK - which I know isn’t standard. So I’m still only on 100mg, but I’m generally doing well. I haven’t had any diarrhoea, just a very mildly upset stomach, but not enough to need to take loperamide (I know I’m lucky). The thing I have really noticed though is that my fitness levels seem to have fallen off a cliff. I did couch to 5 k after chemo and had got up to being able to manage 7k moderately comfortably. Now running feels massively harder, and my times have got much slower - I struggled to manage 5k at the weekend and it took 3 or 4 minutes longer than before I started taking it. I do the online Penny Brohn strength exercise videos once or twice a week and they feel much harder too and leave me exhausted. I know this seems like a very minor problem compared to the struggles a lot of people have, but I really want to lose weight and improve my fitness. I just wondered if anyone else taking Abemaciclib had experienced anything similar? I have googled and can only find advice saying ’gentle exercise can help with fatigue’. I don’t want to be stuck doing only gentle exercise for 2 years. But then I don’t want to over do it and make the side effects worse. Any advice? I’m 50, btw, and my BMI is about 26, so really need to get that down.
Hi Dot 2 dot
I have been on Abemaciclib for almost 6 months with only mild tummy troubles now and then so feeling fortunate so far. Luckily I have not had energy or fatigue problems however I know this is very very common as the oncologist has told me several times that this is a side effect to expect. Evidently like all side effects for Abemaciclib it can settle after a while.
Best wishes
Bookie
Hello, glad you are doing ok on the 100mg dose. I was on 150 with minimal side effects, but they dropped it as my colitis flared up and they were worried it was masking Verzenios side effects.
I’ve exercised before, during and after (not sure I’ve reached ‘after’ yet!) treatment and I am definitely slower when I run at the moment, however I find I still have good endurance over distance. I feel a lot better when I run, even if it really tires me out. It at least helps me sleep well and really reduces hot flushes, so I think that’s a win! I’d say you can definitely go further than ‘gentle’ exercise. Maybe try to balance running with some strength work / hiit too? There are some amazing people who do this for people going through treatment, and they are very knowledgeable. I’d recommend Sarah at Get Me Back (if I’m allowed to give recommendations here). She does online stuff which is good if you’ve nothing locally. She also give you access to physios, yoga, nutrition etc.
If you’re on Instagram there are some great accounts to follow (shout if you want details, I know IG isn’t for everyone). Otherwise, there are loads of good visuals around at the moment (I’ve googled and attach the MacMillan one, most are very similar). I try to run 2x per week and then do one or two strength classes if work isn’t too busy.
Hope this helps, I’m happy to message more with the sort of resources and things I’ve used.
Hi , Ive been on Abemaciclib for 10 months. 150mg for the first 3 months then had to drop to 100mg as the diahorrea was affecting my kidney results. These are much better on the 100mg. However I do get very tired easily. Its almost like my level of fitness has stalled at what it was when I started the drug. I dont think I’m getting worse but Im definitely not improving. I feel lucky to be on this drug so it looks like something I’ll have to put up with for another few months. I also think it has stunted my hair growth. It was short , recovering from chemo, but definitely growing. Now, it gets thick on top but no length. Weird. I’m hoping that starts up again when the abemaciclib finishes.
I am on my 2nd week of Verzenio 150mg twice a day. I did 100mg twice a day for 4 weeks. I also have diarrhea but it is becoming somewhat manageable and I stay close to home. I don’t like the way loperamide makes me feel so not using that.
3 days after starting at the higher dose, I developed ocular migraines and had 6 in 7 days. I have a call in to my oncologist. Has anyone else experienced this? The oncology pharmacist says this is not a side effect of Verzenio. I am a bit dehydrated based on latest labs and have had insomnia which could be the cause.
Anyone else had this happen?
kmw