Hello i was due to start Abemaciclib on the 8th, turned up the hospital only to be told that i wont get it became the pharmacy is waiting on the consultant to sign the drug off.
Just spoke to the breast cancer nurse who told me that the main oncologist has not signed the drug off and this will be discussed in the meeting next week.
I am so worried and i dont know why it has taken all this time for this not to be sorted. I finished chemotherapy on the 24th of June and was due to start this drug on the 8th July
Hi, I’m on Abemaciclib and I had a delay too but don’t think it’s anything to worry about. I’ve read up about it and can’t see anywhere that it has to be started within a certain time frame. But I feel your pain as these things are annoying!!
Hope all goes well for u x
Hi islandgirl, No need to worry about start date. I’ve been on the drug for a while, but when i’ve had dental work i’ve been off the drug for up to 3 months, at the moment i’m off the drug for a couple of months pending tooth extraction. As you are at the start, i don’t wish you to rush, they start you on 250mg, which is very strong and many of us failed to tolerate…and dropped down to 200mg. ie you need to be near the toilet, But in the interim you could put together your emergency pack:
Wet ones, Sanitary pads, Loperamide, or those for nausea. Learn wher the local toilsets and other are as you may need quicker than normal. Obtain the emergency card from Macmillans, that asks shops if you can use their toilet in a hurry if you get caught short. We’ve used this more than once. Someworried that you were going to make a mess, you don’t its just that you can’t hang on to find other public toilets. Plus find out where the diabled toilets are as they often hae a wash basin next to the toilet.
The lowest dose is 50 mg, and i eventually ended up on that.
Before you start it might help to know what is your norm, ie when do you normally need the toilet for a bowel movement, little tips like this were given to me, and I’m so grateful. So good luck, you will get into your routine, and don’t be afraid to constantly consult your team, I opted to email them with most issues and found they respond within a few days at the most.
Lol Moonsox xxx
Hi islandgal,
Thanks for your post.
It’s understandable that you are feeling worried about the delay in starting abemaciclib. Delays in treatment can happen for many reasons, and it can be very difficult when this happens.
As @moobloo says, there is not a set time in which you have to start the treatment by, and as you have recently completed chemotherapy it may give you more time to recover.
As @moonsox comments, some people do experience side effects from the treatment which can include diarrhoea, so it can be helpful to be prepared. The usual starting dose is 150mg twice per day, but this sometimes does have to be reduced.
Do speak again with your breast care nurse or treatment team to let them know about your worries.
We also have a Facebook live session tomorrow at 7pm on waiting for treatment which you may find helpful.
We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events. Talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.
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Best wishes
Katie
Breast Care Nurse
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