I am wondering has anyone had similar experience on Rucaparib and what happened next.
After Niraparib caused serious heart problems I had a 6 week rest to allow it to recover (which it did really well) and I then begun Rucaparib 600mg twice a day . After only 11 days my liver function had been affected and ALT was 245. Apparently normal is upto 40. I felt awful too with depleted appetite, fatigue etc. So my oncologist has taken me off them and am having a blood test again Monday with a view to maybe a reduced dose .
I am so frustrated by my body’s response to these drugs as apart from having OC I consider myself healthy, have no underlying conditions and normally am quite fit. Like others I had such hopes that a parp would give me a longer remission and now find myself worried this won’t be so.
With love and hope that you are having the best day you can today.
Jan.x
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Litchick
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The same happened to me in March. They stopped my chemo after cycle 4 and put me on Rucaparib 300mg x 2 but my bloods went haywire so they reduced my dose to 250 mg x2 and so far it’s worked. Hope they get your dosage right soon.
Hi & thanks for your reply . It helps to know others have been there and I’m so glad you are now on a dose that is tolerable. Got my fingers crossed for this. On a positive note I’ve got my appointment for my Covid vaccination next Tuesday . Yay!Thanks again. x
I hope you will be able to tolerate a lower dose. I’m so grateful for Olaparib for giving me this time though if I could get the vaccine I’d be really happy!
Hi Jan ,I started on the higher dose ,but felt so awful,that I rang my Oncologist and said I would not be taking it anymore. I then had 4 days off the drug, and she then suggested I tried 300mg twice a day, which I must say has been easy & all my bloods are within the normal range. So far I have had two months at this level and in total my CA 125 has gone down by 7 points to 11. I had a Consultation last Thursday & it was suggested that i up the dose to 2 x 200gms twice a day, which I am willing to try, but if I get to many side effects I will go back to 300mg twice a day.
On Monday I will be having my Covid vaccination, so I will continue on the lower dose & switch over the following week.
I hope that things improve for you regarding your liver & that you can try a lower dose .
Thank you so much. Your response has given me hope that maybe starting back at 300 mg a day is the way forward. I’ve given my liver a ‘good talking too’ and fingers crossed that come my review on Tuesday it is behaving itself. Long may you stay well on Rucaparib too.xx
Can I ask you to clarify which dose you are taking please - you say you are on 300mg twice a day.... but 'its been suggested you up the dose to 200mg twice a day...' Do you mean you are currently taking 100mg a day?
Hiya,I was put on a 600mg x2 dose of Rucaparib after chemo . After 4 days of the tabs I developed a really bad headache, ulcers in mouth, aching joints but no nausea. Asked Dr if I could have a reduced dosage as headaches so bad couldn't function normally. Don't know if headaches are a common side effect?
Hiya, there’s nothing worse than a nasty headache fortunately I didn’t have headaches but experienced nausea which seemed to be associated with an awful metallic taste. I could not drink tea or water without adding lemon or juice, but most food tasted ok. Hoping a lower dose works for us both.🤞. X
Hopefully you will do better on a lower dose of Rucaparib...I just wanted to ask about what happened to your heart when you were on Niraparib when you say you had 'serious heart problems' while on it. I'm asking because my heart rate is high on Niraparib and the drug to control it still does not take it down below about 95 at rest,when my resting heart rate before the drug was around 75/80.... I am a bit worried about it and I wonder what happened with your heart...
Hiya, when I was on Niraparib my heart rate was elevated to about 100 at rest and then would shoot up to 130+ on gentle exertion( eg getting a shower) . It also became very irregular .It is interesting you say you are on a drug to bring your heart rate down because I was told that was not possible for my drug-induced changes. However when I came off Niraparib my heart rate settled and an ECG showed no irregularity or issues and it’s fine on Rucaparib. 75-80 at rest.I am guessing you are being closely monitored but if this is causing you anxiety and you don’t feel ‘quite right’ then I would raise it again with your team. As if cancer isn’t enough to cope with !
Thanks. Actually my oncologist isn't monitoring me, I am and I report back to them. I've had a BP machine and an oximeter (which also gives your pulse rate) here for the last few years, so I checked my own BP initially; I did so because I noted my pulse rate had gone up to 100 on the oximeter, and because i could hear pounding in my ears and had a pounding headache - BP was high, heart rate high, and given I've never had a problem with BP before,its the drug doing it. I was a bit surprised they don't check your blood pressure or tell you it might go up when you go on Niraparib - even if they tell you to check it yourself at home would be sensible. But even with the drug to lower the heart rate and BP, they remain higher than is usual for me - but I am apparently not eligible for Rucaparib, otherwise I think they'd have changed me onto that instead. As for liver readings, my alk/phos is sky high on the Niraparib too, but all other liver enzymes are normal, so they don't seem to be concerned about it. To be honest, I think I'm heading for more chemo fairly imminently anyway, so may not be on niraparib for much longer...
I hope you are able to go back on Rucaparib, preferably on a lower dose - its not worth it if it causes too many problems otherwise, is it.
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