Hi, I’m on my journey through PR ER+ BC. I’ve had chemo, mastectomy and reconstruction, lymph node clearance and I’m starting radiotherapy soon.
I have hormone therapy to come. My oncologist says I’ll be on abemaciclib and zoladex. It only came up as I mentioned I’ve booked a holiday at the end of treatment and he was shocked and told me I can’t travel for 6 months. This wasn’t mentioned before. Now he says it is my choice but that there is a risk of significant diarrhoea and also infection for the the first few months and that it’s my decision whether to travel.
Can anyone help me understand how it feels initially and whether I’m crazy to be thinking of travelling long haul. We’ve booked the holiday already and our kids are really looking forward t o it. I feel like we need this time after all we’ve been through. We can’t move the holiday dates and I don’t want to delay treatment for a holiday.
Hormone therapy is due to start in April and our holiday is the end of May. Does it sound doable at all? How bad are the side effects?
Also, are the side effects long lasting? I would really love to return to normal life and I’m wondering if that will be the case on abemaciclib. I’ll be taking zolodex too.
Lastly, I read that abemaciclib can cause hair loss. I lost all my hair to chemo and it’s just starting to grow back. Will abemaciclib mean no hair?
If you read this far, thank you!!
Hi Hey its me
I have been on Abemaciclib for 11 months and whilst people have different experiences my life has pretty much carried in as normal. I do sometimes have to rush to the loo but I find I can manage this through not eating for 2 hours after taking the tablets and learning which foods trigger a reaction. I have no other side effects and my hair grew back the same after chemo. However you do have to have very regular blood tests whilst taking the drug as it can impact the liver and kidneys so I am not sure how difficult this would be if you are travelling?
Good luck with everything
Bookie
Hi Heyitsme,
I may be wrong but I believe the guidelines for Abemaciclib is you have to start it within 12 weeks of commencing hormone suppressant. Will your holiday fit into this gap? I found the first month of taking Abemaciclib was the worst for episodes of diarrhoea however loperamide works very well for me. You could always take loperamide prophylactic.
I am also living life normally. I do find I’m more tired and my gut is more sensitive. I find if I go for a walk or do some exercise it helps the fatigue. I do get some gut cramping but it’s not too bad and on occasions I feel lightheaded. I just hope I receive benefit from this medication and if I do the side effects have been well worth it. Enjoy your holiday.
Hi @heyitsme
Wow, you have been through a lot.
It is great you have a holiday planned and come through.
I have been on Abemiciclib for a year now and it is very manageable. The diarrhoea seems to come in phases and then it’s not so bad.
If you go on your holiday as planned be prepared. I find taking loperamide hydrochloride (just one tablet) after an episode helps, although don’t need to take very often at the moment. I had some feelings of nausea at the beginning and took lansoprozole 15mg which really helped. I don’t need to take those now - so I think your body does adjust to some extent.
I took a short haul flight and holiday soon after(about a month from starting), it did me the world of good.
Whatever you decide I hope all goes well.
Take care of you
Anjuli 
That is super helpful, @Anjuli, thank you. I do feel this holiday would do me and my family the world of good and so I’m not ready to let it go.
Is there a pattern to how the diarrhoea comes in phases? Can you manage that my taking the anti diarrhoea tablets? I’m wondering just how bad it might be although I know everyone is different.
How do you manage infection risk? Do you do anything differently in your life to avoid infections? Thanks so much.
Thanks @shade with the info you shared about taking the hormone suppressent for 12 weeks before abemaciclib I found out some more info. It seems you have to take abemaciclib within 12 weeks of starting take the hormone suppressent. So this might just give me a window opportunity. Thanks so much for mentioning!
@Bookie sorry if I’m asking for TMI but do you find that the urgency around rushing to the loo is only around the time you take the tablets or is it any time?
For me it tends to be around 2 hours after taking it. Strangely though it only rarely happens after the evening dose. If I am going to have an issue it tends to be in the morning so I tend to take the tablet at 9am and never eat anything until after 11.30 at least. I find witn this approach I am able carry on my working day as normal ( I work full time). It is worth mentioning also that if you were to have very bad side effects the oncologist csn significantly reduce your dose without affecting efficacy. I notice that several people have reduced their dose on the forum.
I started Abemaciclib 6 wks ago. The diarrhoea didn’t start until the 2nd week. It’s manageable with Loperamide. It seems to happen at any time of day n night (not just after taking the tablet). I know when it’s going to happen as I have stomach cramps just before I need to go.
Why don’t you ask if you can start when u get back from hols? I’m going abroad in 2 weeks but not worrying cos I know how to cope but if you go just after you start, it may be a bit stressful for you x
@moobloo thanks that’s really helpful. I feel bad about delaying treatment for a holiday. The oncologist said it’s possible but also that he wouldn’t do it. It’s a tricky call.
That’s helpful to know that you get some warning (even if it’s not fun in the form of stomach cramps). Is it settling down at all now or are you just more used to managing it?
Are you doing anything differently to manage your infection risk? My consultant said your white blood cell levels can be affected and it’s another reason not to travel. But I really feel like I need to start living life more fully again. Our children are in school and so I think we have a fair amount of exposure anyway.
Sorry for so many questions but it’s so helpful to learn about to what extent it impacts day to day.
@heyitsme
So I think the diarrhoea can go on for 3 months and if not manageable by then, they can reduce the dose (which I’m hoping I don’t need to do)! When it comes to infection risk, I think it’s probably a low risk as my 2 wkly blood tests have been fine (no drop in white blood cells). There’s a risk with everything anyway so make sure u have good holiday insurance so u have peace of mind. I’ve just got insurance for the first time since diagnosis and it’s only £44.
Hi @heyitsme
Yes the diarrhoea is manageable taking immodium. Just start with one and see how it goes, as you don’t want to go the other way.
In terms of infection, I do wear a mask going to public places (they have started this in hospitals too).
So at the airport I would suggest taking precautions. Hopefully by the end of May the winter illnesses will be over and people will be in better health. Also you will have had some blood tests by then so check your neutrophils (they will drop) but keep an eye out. Eggs and dark chocolate seem to help!
Stay positive and hope all goes well