Looking for reassurance really, after reoccurrence and 8 Carbo Caelix, consultant suggested Rubraca , which after much discussion l agreed to, fortunately it did not agree with me, l was on full dosage with dreadful side effects, and it knocked my bloods to bits . Went to see Consultant and it was agreed it was not doing me any good in fact quite the opposite and he told me to stop taking it straight away. I have had a dreadful head ache now for over a month, pain over left eye and muzzy head making me sick.Discussed in length with Dr and he suggested a head scan but he wanted me to be off the tablets first, but this is my question really , coming up to a month now of tablets and withdrawal has been awful, and no change to headache, has anyone else had this with Rubraca and found anything worked to make things easier. Have a face to face next Wednesday after bloods on Monday.
So sorry for such a long message but really worried and fed up with feeling ill all the time, don’t want to waste the time feeling like this.
Onwards and Upwards
Regards
Linda
Written by
Lmc52
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Hi,Sorry to read that you have had these awful side effects.
I had Rubraca in 2020, top dose 1200mg per day which made me feel awful. I could not eat. I had a chat with Oncologist and she suggested that i start on the lowest dose,and then i gradually increased the dose until I got to 1000mg each day,which I found ok , along with Domperidone (anti-sickness), which worked for me. I was on this for approx. 14-16months, but my CA 125 continued to rise and in 2022 was taken off of them and it was decided that I would have 6 cycles of carbo/caelyx which has taken my CA125 down from 232 when i started this regime to 13 after the 4th cycle.
Hopefully your Oncologist will be able to suggest something else, in the meantime I wish you well & that the headache you have disappears. x
Thankyou for your reply,l just wondered did you have any withdrawal effects when you came off it. Also I hope it all goes well with carbo Caelyx, l coped ok with it after a reduction of dosage, an it did bring my 125 down .Regards Linda x
You seem to be doing all the right things Linda… I really feel for you because you desperately want to feel better after chemo has finished. I hope your oncologist can find a solution for you and a better way forward xx
Thanks for your reply, you are right l was disappointed and hoped for a more normal life, but not to be. Oncologist was speaking to his colleagues to see what might be more suitable to try, so just need to wait and see. Our village has an excellent Pharmacy and he has suggested trying several things , one cocodomol and one paracetamol together and sipping on Sports Lucozade to give the body back salts etc , because of the lack of appetite and sickness so fingers crossed early days yet.Regards Linda.x
I am sorry to read that you have been living with so much pain. Although you have an appointment on Wednesday, please do contact your clinical team for advice in the meantime. They may be able to suggest ways to manage the pain before you see them.
I do hope that the headache you are experiencing resolves soon. Please do get in touch if we can help with any further information or if you would like to talk things through. You can contact us by calling 0800 008 7054 or by emailing support@ovacome.org.uk. Our support services are available Monday - Friday 10am - 5pm.
Best wishes,
Cathryn
Ovacome Support
So sorry you’re going through so much. And you still need months to recover from the chemo so that’s probably complicating things too. I think it takes 6 months to feel anyway normal after so much chemo. It’s very hard to know what’s causing your current issues.
Sorry that I can’t help but I know you’ll get great advice here.
Hi Linda , sorry to hear that you are having a hard time with rubraca.I was put on this two days ago , not long I know.
But today I have been so dizzy I could hardly stand.
I have only taken half of the dose tonight, and will ring my nurse tomorrow.
I have only just finished my chemo and was looking forward to getting back to a normal life, but will have to feel better if I’m to continue with this drug.
I hope you feel better soon, and your oncologist can sort you out .
Sorry you are going through this. I thought the maintenance was going to be the 'easy' bit and give me my life back! Felt kind of cheated really. Iam on Rubraca.Have been since January. Started on maximum dose. I didn't suffer with problems as severe as you my only side effect was fatigue . I couldn't function on any level. Could barely get if the sofa. This led to very low moid whuch became a cycle.Stopped taking it for two weeks at end of May, to allow a lowering of the dose. Have just come off it again as due a brain scan on 11th August. Each time it's been stopped I do suffer with sever head ache and general soreness for about a week. Make sure you stay well hydrated so you are flushing your system. My brain scan is due to my 125 raising but abdo scan actually showing regression since December! My consultant did say it is extremely rare for any spread to the brain and didn't push for an urgent scan. Personally I think that am getting and inflammatory reaction and possibly fluid build up that is having an effect on my marker but hey ,she's the one with the 7 year medical degree and years of experience!!Take it easy and be kind to yourself.Some good advice in previous posts.
You sound like me, I had tiredness as well still do, but it’s the headache that is so wearying. I think l agree with you and am trying to get the head scan as well, l think we all have enough to worry about without extra worry don’t you. Trying at moment to get through to hospital with little success, I’ll let you know what they sat. Take care Linda x
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