Abemaciclib and Tamoxifen - will I be able to work as a frontline nurse

Hi tasha 663, 

I am also on Abemaciclib. I am 63, an ex NHS worker but fortunately retired. I was diagnosed Jan 2023 and had lumpectomy, node clearance, chemo, radiotherapy and now on letrozole and Abemaciclib which I commenced Oct 23. 
My hair has grown back, it is thinner but no bald patches and looks normal to others but I feel it’s thinner. I have been lucky with side effects, my neutrophils were 2.3 when checked 2 months ago but WBC are a bit low at 3.7 and Hb hovers around normal. I have had a couple of viruses Jan Feb this year but I’m living a normal life although I wouldn’t go to a crowded pub but do go to the theatre. I am not going abroad as insurance may be high as I’m still on treatment but I’ve not checked this out and I’m concerned I’ll pick something up on the plane and will be ill on my holiday, however we are off to Northern Ireland in a couple of weeks in the car and staying in a hired cottage. Northern Ireland has the NHS, but I know others do go overseas on this medication. 
Diarrhoea, I have been lucky and find I can cope ok. The first month was the worst and after 3 months it did improve. I take kefir daily as I believe that helps, I don’t drink alcohol but I still get some urgency and have about 2 episodes of diarrhoea a week however loperamide is very effective and I take 2 to 3, 2mg tablets a week. Fatigue, I am more tired but I get on with life. Do the school run for grandchildren, shopping, housework, exercise, meet friends but I’m in bed by 9pm most evenings. I am still on 150mgs but if you are struggling the dose can be reduced and the Monarch E study says it doesn’t affect the drugs efficacy. I expect I will have a dose reduction before the 2 years are up. 
I think most of us felt as you do when offered this medication but I’m now 9 months into the 2 year course. I just felt if I did get an early recurrence I would regret not taking this medication. I may still get a recurrence but I now now I excepted all the treatment offered. Wishing you well with your decision. 

thankyou for your reply, I too feel that I should do everything I can to reduce the risk but if i cant work (im 50yrs old) and I cant travel I don't think I will accept it, i was originally told I would be having a lumpectomy with radiotherepy, that escalated within a couple of weeks due to the further test results, I'm certainly not complaining the care I have received from my local trust has been second to none but i'm not sure that the risk reduction is enough for me to put my life on hold for another 2 yrs. 

Hiya ,I am in a similar situation to you .I have gone through 8 rounds of chemo ,mastectomy with reconstruction and was told by oncologist on Tuesday that I will be having 15 sessions of radiotherapy .The breast clinic surgeon told me weeks ago that I would be offered Abemaciclib as well as taking Letrazole .I coped pretty well with chemo ,and am healing well after operation.My hair is short but coming through pretty thick (although got a life of its own sticking out at all angles!) ,my eyebrows and eyelashes are growing again and the awful eye-watering finished so I can wear makeup again .All going good so far and,like you,I had in my mind to get the radiotherapy out of the way and it was like an end to the treatment apart from taking letrozole for years which I can cope with.Suddenly all this talk of Abemaciclib has thrown that out of the window .All I keep hearing about is likelihoods of a recurrence ,rather than livjng in the moment and being pleased that the cancer has been cut out and anything lurking will be zapped in radiotherapy .I keep reading the stories of awful side effects from Abemaciclib and really don't know how/if I can manage dragging this on for 2 years .I was hoping life would be fairly normal ,not worrying about regular bouts of diarrhoea, losing hair again etc .I said this to the oncologist ,and he admitted it is tough being on it and that I could try it but come off it if I wasn't happy .He said basically it's up to me ,but didn't seem to be pushing it too much which confused me .I also find it confusing that people say their dosage is reduced, sometimes by  2/3 from 150mg to 50mg but they are told it still works the same .If so ,why give 150mg in the first place? Its so confusing .I will think about it again after my radiotherapy

I think you've nailed it there you get your head round the end goal and then this has now thrown that up in the air, its not like its a few months either, 2 years is a bloody long time. I cant afford to not work and definitely don't want to have to be redeployed to a non patient facing role. as for traveling and enjoying things like swimming and the gym, concerts and going into crowded places I'm not really prepared to continue to avoid for the next to years, normality is what I'm craving and whilst i know I will never be fully back to what was my normal I can try and make the most of it. I've spent the last week looking at holidays, this isn't just affecting me, my partners life is on hold too, not that he's putting any pressure on me at all but I feel bad. 

I don't understand the dosage thing either, why don't they titrate up rather than down and if 50mg works then as you said why even give 150mg, seems ridiculous to me. 

My radiotherapy will be in august/sept they have requested the GP prescribe Tamoxifen around then too and written to the other team regarding the Abemaciclib, I am to expect a telephone appointment from them. I'm going to make sure I have a list of questions for them.

Thankyou for your reply, I hope the rest of your treatment goes well and you are happy with your decision. 

Thanks Tasha663 .Both got the same worries and fears . Another thing I found was that Abemaciclib was only authorised for wider distribution by NICE in 2022, after agreeing a reduced cost with the manufacturers.  If so ,how do they know the long term benefits to a much wider pool of patients .I would be interested to hear how you get on with the questions you are going to ask ,if you get to speak to your team before I do .Another thing putting me off is all the blood tests that have to be done .It's like being back on chemo with the visits to hospital for  appointments for picc line ,blood tests & chemo itself .

Hi tasha 663,

I asked the same question about the dose. A clinical pharmacologist explained to me that studies have been done that suggest that some of us require higher doses of a drug than others to get the same effect. It’s apparently all down to our genes, that’s why we are started on a higher dose, have regular blood tests and the dose is reduced if our bloods show problems or if our side affects are not manageable. I’ve read the results of the Monarch E trial and there is no statistical difference in the results related to the dose. 
Often the women who have the most severe side effects are quite naturally the ones who post their concerns. Women who are coping ok on Abemaciclib tend not to post. I know from reading post many women choose to travel whilst taking this medication, some have breaks from Abemaciclib whilst on holiday with their oncologist knowledge. It is my choice not to fly or to go into densely populated venues but others do. I guess I’m cautious and I’m enjoying exploring the uk at present. 

Hello everyone, I understand what you are all saying. I could not have abemaciclib as my diagnosis was earlier than yours. It became available 12 months after surgery. Instead, my oncologist referred me to the Trak-ER trial which is still recruiting. It’s run by the Royal Marsden, but you can go to one of several participating hospitals up and down the country. It’s a liquid biopsy trial, using the DNA from your original tumour. Once your individual blood ‘tracking’ test is set up, you have a blood test every three months that looks for CtDNA - circulating tumour dna  in the bloodstream. This is the first early sign of a possible recurrence - before anything can be seen on scans. If you test positive, you are either offered pacclociclib (similar to abemaciclib), plus fulvestrant, plus 6 monthly scans to see if a recurrence does happen. Or you have your current medications reviewed plus six monthly scans, again monitoring you with continued blood tests. Either way, you are monitored at a very early stage. If you test negative, you continue with the three monthly blood tests. I have had 7  so far. You have these for three years. More info is available on their site. I had no choice as abemaciclib was not available to me at the time, but I am very grateful to be on this trial. Just something to consider I guess. 

myself and my partner were wondering when they started to use Abemaciclib, thanks for that. i did see that it costs nearly £3000 per month. 

I also read that the blood tests are fortnightly to begin with then going to monthly and that you have to have appointments monthly too. Its alot when you work full time and have other family commitments, I don't have small children but still have other commitments. Id be happier to accept it if the impact on my life was minimal, i'm worried about the side effects and the impact on what I can and cant do mainly. if I cant work doing the job I have worked so hard to get to then it will have to be a no from me, this might sound daft to some people but its massive to me. I will let you know how i get on with the appointment. 

Hi,

I'm also a nurse, but have been off since my surgery in October. I've finished chemo and radiotherapy and started abemaciclib and letrozole last week. The fatigue was getting better until this week, but I think that was the zoledronic acid I had on Monday, and I'm feeling better today. Diarrhoea x1, stopped with loperamide and it may be triggered by something I ate. I need a bit more time, but am hoping to go back to work at the end of the summer. I have my first set of bloods on Monday to see the effects, but I'm told things will settle after a few weeks and there is the option of reducing the dose if needed. Oncology team are happy that I can return to work (critical care outreach) once Ifeel up to it. Things are slightly complicated in that I am awaiting treatment for a primary thyroid cancer and it's not being able to get insurance that is stopping me booking a holiday, but I'm going to try a uk holiday 1st.

I hope that helps reassure you.

Thankyou for your reply. The reading I've done too has shown me that i can still travel as long as the oncologist is aware, I'm worried about work though, I was advised that I couldn't go into work during my 6 rounds of chemo due to the risk of picking up an infection, im a mental health nurse, I am based in a general hospital completing assessments on medical wards and in A&E. I am currently off sick but was really hoping to return as a soon as i feel up to it, I have had 1 hospital admission with neutropenia, this was because i caught a cold from my partner, that couldn't be helped. I don't want to be redeployed to non patient facing role and cant afford to not work, I'm too young to retire and if I'm being honest don't want to retire or give up a job I love. 

Its a big decision, not one I was expecting to have to make unfortunately.