After a bit of a tussle, it looks like I will be getting Rubraca later this week, just within the eight week limit!
I am really concerned that the side effects will be so awful that I will not be able to continue after all the fuss I have made! Please can I have any tips from people who have coped on this regime. I know to drink lots of water, which I will find difficult. (Will tea do instead?) but is there any other helpful advice out there please?
Jenny
Hi Jenny
We are all different - you may do really well on the high dose but don't worry if you cannot cope, they will lower the dose. This is the third dose reduction for me and when my platelets have recovered I will be on the lowest dse of 600mg per day. It's been hard on my stomach and bloods but I also know people whom are doing well on higher dosages. Just ensure when you start you take your anti-sicks meds. .... Good luck, don't forget you can always come down if you cannot tolerate it. X
Thanks. No one has mentioned anti sickness meds but luckily I have some left over from chemo. Do you take them before the Rubraca, or before meals?
Jenny
I'm on olaparib so different parp but with every new prescription I'm offered anti sickness and anti diarrhoea script too. Would imagine it could the same for rubraca.Liz.x
I take them an hour before the Rubraca and and I always ate something just before i took Rubraca although it does state you can take them with or without food.
Thanks for the advice. Hopefully I will be ok. I don't know why, but I am more worried about starting the parp, than I was about starting chemo.
Jenny
I know Jenny. I was exactly the same! I think it's because we've heard all the bad stories, but we don't hear too much of the good ones. but there are plenty of the around too! Don't worry i couldn't hack the high dose and it seems a lot of people can't but they will lower it to suit. All the very best. XXX
Hi Jenny, Don't know about parp as I'm not on one but as far as drinking is concerned I would say drink anything you can, I'm not a big water drinker especially in the Winter but I drink plenty of tea and it helped keep my kidneys safe during Avastin. All the best Sue xx
Pleased to hear that you are getting Rubraca within the 8 weeks. You should get anti sickness tablets,if they were not mentioned just ask for them. I had the maximum dose of Rubraca to start with 1200mg per day,but could not tolerate this, so was put on 600 per day for 2 months. I have been on 800mg per day for the last 3 weeks and seem to be ok. I am actually going to get my bloods done this morning,and will know the result of those tomorrow. I hope things go well for you. Take care.x
Hi Caleda. Good luck with your bloods. I'm going for mine tomorrow. Just hope my platelets are coming back up so I can go on the 600mg.
Hi Win, I hope that your blood results will be good,which will enable you to go onto the lower dose. Fingers crossed for you. x
Hi Win, My bloods were within the range of what they should be. My CA125 only went down 1 to 10, but all ok.x
Hi Caleda that's great news. CA125 may have only gone 1 but it's gone down that's the main thing. Hope you do well on the 800mg
Thank you Win, The Oncologist wanted me to step up to 1000 mg a day but I said no,because I have only been on the 800mg for 3 weeks.I hope things go well for you. Have a good weekend.x
Yes I think that's sensible as you are also getting good results on 800mg. I was on 800mg for 5 weeks before platelets dropped so I would say another month on the 800 and then if ok go up.
Hi Win, Thank you for your reply. It is always good to get another opinion. When will you get your blood results? Have a good weekend.x
Hi Caleda I had my blood results and oncologist said that platelets have come up a little but not enough to go back on Rubraca, but they are coming up which is good news. My CA125 was 2.5, and the week prior it was 2.7 but only 3.4 on recurrence! My stomach is near back to normal, so I guess it was the Rubraca causing the issues. Last time I came off Rubraca it went back to normal. I really hope the 600mg works for me when I get back on the Rubraca, but my Oncologist said we can always change parb if its upsetting your Stomach which apparently Rubraca cn cause stomach sensitivity in some people. Just hope i'm not off them too lo ng!
Hi Jenny, I have personally not been on this medication. Started zejula but it didn’t work. Anyway I too was told I have to drink lots of water due to kidney issues and it became such a chore I hated the sight of the stuff. I got round this by stocking up on water melon, ice lollies, yogurts and also eating clear soups. I discovered there are lots of ways of upping your fluids other than actually drinking water. Good luck
Yes I drink lots of squosh and water Stay hydrated.xxx
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