Hi, stage 4 cancer here.
I can’t find anything online about this medication, that is why I am asking here.
My oncologist said that my next line will be capivasertib and faslodex.
Those few sparse posts I have found online describing this treatment “worse than chemo”.
Capivasertib is a new medication approved in UK less than year ago. Is there anyone who can tell me how reality looks like, not just a list of side effects from manufacturer portfolio? Real world experience?
Will I be able to work? Will I be able to take care of myself?
I live alone, have no friends or family, so it is not question of hyper-independence but my reality.
How those injections looks like, how everyday life on them looks like?
From what I was able to find online: capivasertib - for 4 days out of 7 you are just able to lay down, maybe go to toilet and that is it, 3 days you are getting a little bit better, but then - next cycle starts. With Faslodex it is - for 2 weeks out of 4 you have extreme pain and fatigue, hot flushes AKA hell’s furnace, 2 weeks of slowly getting better, but then - next cycle starts.
I do understand that cancer is not a walk in the park but this feels a little bit of overkill.
I did contacted Macmillan and Breast Cancer Now helpline but answer I got was - “we have section on our website about faslodex”. I did have a look but it is the same like a leaflet from a box.
thank you,
I would appreciate it if you could help me.
k
Hi Kate - I am also stage 4 and have been on Fosladex since April this year and Capivasertib for six weeks now. I have had none of the side effects other than the rash which started a few weeks ago. The Fosladex injections are ok going in but are like the ache after a flu jab or any intramuscular injection for a while afterwards. All in all, I am feeling far, far better than I did before on Letrazole and Palbociclib. I was terrified of the new side effects before starting the Capivasertib and couldn’t find much about it on this forum. None of the chemo nurses or the pharmacist at my treatment centre had ever had anyone there on this treatment.
I guess what I’m saying is that everyone one reacts differently to drugs and I have had a reasonably good experience so far. My only problem now is that if the rash worsens my oncologist might pause the Capivasertib until it goes away. I have read that taking antihistamine tablets (one a day) before treatment starts and in the first weeks might stop the rash before it starts. I am on antihistamine tablets now, but it was advised only after the rash started. It is probably worth asking your team if it is a good idea.
I hope it all goes well for you - fingers and everything else crossed for you - and please let me know how you get on.
Best wishes, Dianne
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Thank you so much for your reply.
It is bizarre that even oncologist or nurses can’t give any information beyond what is on a leaflet. And you are right - there is not a lot of patient on this treatment yet. I am on Letrozole and Abemaciclib since March 2025 - I had no side effects at all from either of them, so I am a bit angry with myself that I have failed first line so fast.
I will ask about antihistamines - if they can be taken as precaution.
Thing I am worried most about is fatigue. Living alone with cancer adds another layer to cancer itself.
all the best, I hope oncologist can adjust your dose for rash, not to stop completely
Kate
I think I am on a low dose to start with anyway. We’ll see. I am much less fatigued than when on Letrazole. I hope you are not too bad. I am retired, but I would be able to work if I had a job. I hope you can. My first line treatment was shown to have stopped working in a PET scan in March and they sent one of my biopsies off to Foundation One to see what treatment would work best. Capivasertib won, so I will be very upset if they take me off it because of a rash.
Best wishes to you. x
Hi, I went from Abemaciclib and Letrozole which Id been taking for 5 years. I was so worried about the list of side effects for Capivasertib and Faslodex. I was pleasantly surprised. I’ve had 3 injections and just finishing my second cycle of Capivasertib. Bit of tenderness for a day or so after the injection. Bit more tired than before. Bowel movements a bit looser, but not an issue. Only issue I’ve had that is really painful is sciatica. The injection needs to be away from the sciatica nerve, so worth mentioning this when you have it done. Everyone will experience different side effects, but it was nowhere near as bad as I thought it would be. I had chemo when I had primary cancer and that wasn’t pleasant at all.
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Thank you for your reply ( love your nickname
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I am sorry for your sciatica pain - I had this ( work accident) and it is very painful. I would think that nurses know this - how and where to make injection. I did read it needs to be in upper quadrant , I have even printed out diagram but not sure if I will have a nerve (pun not intended) to show this to a nurse 