About to start abemaciclib

Hi Bobbiboo! You’ve probably seen me on this forum banging on about stuff; I know I’ve seen you (not banging on like me ). Although I’ve never had 

abemaciclib, I know about health professionals telling me about side effects! Terrified is an understatement! However, I never experienced any of them as bad as they were described to me. If this drug is going  to benefit you, then it makes sense to give it a go! You may be one of the MAJORITY who experience no side effects! One’s mind can convince us to “imagine” all sorts of s**t! But our minds can also tell us that we’re fine! Just decide your going to be OK!  xxxx

Thanks Mazz. How are you doing on anastrozole? I've been on it 10 weeks now and I found the side effects have settled and I'm.ok with it 

Xxx

Again, scary stories about side effects have been proven wrong! I’m fine on Anastrazole, my appetite has reduced and I’m feeling very happy. Perhaps it’s just relief to have all the hospital visits over with, I don’t know, but my weight gain through chemo has tapered off, I’ve lost a few pounds without any effort,think the steroids made me gain some weight during chemo, I couldn’t seem to get full! Oink oink! . But I’ve definitely made a conscious effort to override all the stuff I’ve been told! I’m just glad to be alive, cancer free (for however long), this is my life now, not going to worry about anything anymore, until there’s something to worry about!  xxxx

Hi Bobbiboo I think we’ve “met” on another thread…

I’ve been taking it since January and now feel settled and well on it. I started on 150mg but am now on 100mg and that seems to suit.

I felt slightly sick in the first week of taking it, was given anti sickness meds but never felt bad enough to take those. More like how you feel when you’ve over indulged for a few days..like after Christmas! 

Diarrhoea kicked in at about day 5 and I won’t lie, it was bad for about a week. But I did get it under control with Loperimide. It eased off a bit after that but I did have to be watchful and learn how to recognise how my stomach was feeling. Within three months it was down to the occasional episode about every 10 days.

In May my neutrophils went below 1 (they’d been hovering at about 1.6) so I had to have a two week break. I resumed taking it at 100mg which was initially because I was going abroad for two weeks and my consultant thought it safer, but he’s kept me on that dose because I’m doing so well on it. Stomach is back to normal.

My neutrophils are back up to 1.6 and I’m told, will probably stay around this mark for the duration - it’s a feature of this medication. Unlike chemo, the risk is not about neutropenic sepsis, but just the general risk of infection with a lowered immune system. I’ve not had any problems with infections. I’ve had 5 Covid jabs and two weeks ago spent 3 days sharing a house with someone who tested positive for Covid the day I left, but didn’t get it.

My hair and skin are fine. My appetite and weight are good. I do get fatigued but that could also be the Letrozole and the fact I’m now back working full time. But it’s not stopping me doing anything, including running three times a week, walking the dog every day and doing weights/strength training. Even when I feel I could lie down and go to sleep instead of moving, I get on with it because I know I’ll feel better afterwards. Doing all this, perhaps even more than I did before, is also my two fingers to cancer.

It’s worth keeping a daily note of how you’re feeling so you can let your doctor know what’s going on. It also really helped me to work out a bit of a pattern to help manage my stomach. I’ve also found that being strict on the timings of taking it help - keeping it to the 12 hour gap between doses and taking it at the same time every day - for me that’s 8.00 am and 8.00 pm. In the morning I also find it helps if I take it just before I eat anything - seems worse if I take it after food. 

I hope it works out for you, happy to chat more if you want to xx

Thanks so much thats really helpful. I started it last night so i ll let you know how I go. I'm going abroad on holiday in October to I thought of suggesting to one doctor that I would stop it then for a couple of weeks .

Xx

Hi bobbiboo

would you mind updating in a few weeks…hoping to start this soon ….. still waiting for it to be available but I think they’ll let me have it. X

Thats good news. I'll let you know xx

Hi I've been on the drug for six months just watch your diet ,I haven't had alot of diarrhea few stomach cramps and tiredness, it's not a chemo drug I was told I'm on 100 mg . Take and forget I try to