I started on preventative abemaciclib in September 2023. 5 weeks ago after a routine blood tests I had highly elevated liver enzyme. Abema was stopped and urgent CT scan was ordered of neck, thorax, abdo and pelvis. I have had weekly bloods since, liver improved and I restarted at 50mg after three weeks and enzymes are now normal again.
Last week, reports on scans were finally back and at my clinic appointment I was told a nodule on my lung I had never been told about was “stable”. More worryingly, I had a 1.3cm enlarged supraclavicular node on the right side, opposite to my tumour treatment. Onc examined supraclavicular atea in both sides very firmly and said he could not feel anything and “trusts his hands”. He said he would be discussing my case at the next mdt meeting to discuss how to go forward and that treatment would likely be further scans and biopsies.
I have been very fatigued since chemo and this has increased over the last few months, to the point I am in bed worn out most of the time. I put this down to nearing the end of abema treatment.
I am now extremely frightened and anxious I have a recurrence. Has anyone experienced anything like this please?
Sorry to hear this, your concern is understandable. I started on Abemaciclib Feb 24, and have had various investigations. Firstly vertigo and then brain scans, and 3 breast biopsies after routine mammograms. They are belt and braces with the testing - which has come back clear but I’ll be checked again in a few months. It’s anxiety inducing. But I wanted to comment on the fatigue because it has been considerable for me recently, and it was impacting my wellbeing. I was given a month off abema and very soon started feeling more energetic. I’m back on it now and again more fatigued and reducing what I can achieve in a day. But I was delighted to see that my bloods were all normal after a month break - The first time since starting chemo - You’re so near the end of the 2yrs of treatment. I hope the abema has been working for you… wishing you well and well done for getting through the abema, it’s not easy.
Thankyou @Newleaf for your comments, kind words and well wishes. It helps to hear from someone who understands. My husband has been fantastic throughout my treatment and is visibly worn out too now. He was thrown by my latest appointment too so it is miserable faces all round.
Anyway, fingers crossed.
Good wishes to you, hope the fatigue stays manageable. You have the bigger part of this treatment behind you now too…not long to go! All the best x
@caroleanne
Hi, not sure if this will help u but I had a nodule on my lung and was told its probably damage from the radiotherapy. Seems it’s quite common. I’m having regular CT scans to check it.
Take care xxx
I am worried about stopping Abemaciclib. While I have tolerated it well I don’t really understand why it’s two years only. Is it because it’s so expensive that people stop?
As it hasn’t been out that long and am worried that there isn’t enough evidence to stop it.
I know the research claimed two years is enough but thinking about how drug advice changes like tamoxifen is now given for ten years instead of 5.
It would be worth asking your team - I’m not sure exactly, but I think I read somewhere that abema stops being affective after a certain amount of time or it has a long lasting impact following the 2 yrs so isn’t needed - maybe it says something on the Verzenios website. It works differently to hormone therapy. Although it’s only a few years it’s been prescribed for early breast cancer - it’s been used for advanced for some time I believe. Hope that helps!
Thank you. I am worried that it’s so new they don’t know. Recurrence is constantly on my mind and I find it’s more difficult to cope with after effects now than before. Sometimes it feels like I am just waiting to get another problem and that will be me done. Hope you are doing well.