Rucaparib and a "normal" life!

[Kouyate]

Hi all, I've just finished 6 rnds of chemo for my first recurrence and was glad it was all over and scan results looking positive. I was also really positive about going on a parp inhibitor, after all if it keeping us in remission for longer it's a good thing however, I've only been on them a week and am feeling tired and queasy (vomited only once) and am really down that it feels like I'm on chemo all over again. Does it get easier? I want to feel that I've put the cancer behind me for a while and not feel ill like this xx

[Lyndy]

I think it’s a big ask to get through chemo and then immediately start a drug that can make you feel quite unwell. Having said that, I began to feel a bit more normal after 6 weeks and 9 months on I am living a pretty good life without many side effects.So it will get better but I would encourage you to report all side effects and talk to your oncologist about reducing the dose a bit until you are more used to it.

Best of luck xx

[Kouyate in reply to Lyndy]

Thanku Lyndy, that's reassuring to know that hopefully I'm not always going to feel as poorly as this and I was given a kind of diary to write down the side effects I'm having x

[Tillymint61]

I am about to start the same on Monday. I am fully expecting the full hit of side effects you describe. If in the UK you should be able to get side effects under control via your triage number and Nurse Specialist getting meds altered to help with sickness etc. I was speaking to a lady whose been on it for 18 months who advised me to stick with it if I can as she is benefiting from a good degree of normality now. She did say things settled for her after about 4 to 5 weeks. Good Luck.x

[Kouyate in reply to Tillymint61]

Hi Tillymint, as Lyndy has said the same about it settling down it's really great to read 😊 I've only been on them for 10 days so I know I'm a moaning mini lol, just wasn't prepared for feeling like I'm back on chemo! So far other than being a little tired the sickness is the only thing I'm struggling with. I'm seeing the consultant on 11th Feb so I'll discuss it with her. Hope u get on okay when u start urs 💓

[Tillymint61 in reply to Kouyate]

Hope it all settles for you soon. X

[Dales-Rambler]

I can certainly identify with this, but it does get better. 😊 I had more chemo and surgery for 1st recurrence last year and started on Niraparib in September. I had slightly high BP, migraines, felt very nauseous, exhausted and experienced indigestion daily, (helped a little with meds) so the dose was reduced. Nausea and indigestion did subside just leaving me with extreme fatigue and the occasional headache. My oncologist suggested a change to Rucaparib (full dose) and the nausea came back, but a reduction in dose to 75% has really helped. I've now been on the new regime for 2 months and my energy levels are also improving, so much so that I'm shortly returning to work, something I thought would never happen when I 1st went onto PARPs and was feeling worse than ever. Keep at it (use the symptom diary for feedback) and I'm sure things will settle down for you.

Best wishes

Sally

[Kouyate in reply to Dales-Rambler]

Hi Sally. I returned to work fill time just after the new year as I thought well my chemo has finished so now let's get back to normal, so I'm worried that the Parps will make me have time off work again so I'm keeping my fingers crossed that it doesn't x

[Realistic in reply to Kouyate]

Hi Kouyate,I say just try and stick with if you can, although l havent been on your medication l know my friend went through side effects like you, and was told to try and get through it if she could she did have to have a lower dose in the end but it did the trick. Just ask your team they can mybe just tweak if for you if necessary. But please dont suffer in silence.

Sounds like your doing amazing and really l think your body needs time to recover after chemo. Its amazing how we can feel horrid and then suddenly get used to things . Good luck and get the right advice. Love & prayers 🙏 SheilaF xxx

[JustKBO]

Hi Kouyate. Stick with them if you can. My dose needed tweaking after just one month when they lowered my dose and a lot of the symptoms subsided. I’ve been on it since March 2020. I am tired a lot of the time but not so it stops me do anything and I find that once I get going it disappears. The key to keeping nausea at bay is to keep hydrated, drink water every half an hour if you can it really works. Good luck stay strong. 💪🏻

[Kouyate in reply to JustKBO]

Hi JustKBO, ye mornings are the worst for me too, and thanku for the water tip, I'll give it a try x

[CastrolColours]

I am on Rucaparib and have been since about March last year, I am on 600 mg Twice a day, When I first started them I felt all sorts of side-effects from really bad constipation and feeling sick too really really not constipated.

It took about six months for it to even out and now I hardly know that I’m taking a chemotherapy drug, lack of sleep is a big problem but other than that I’m pretty ok.

The other problem with me is being in the Sun, at the height of the summer I could burn within 10 minutes so do you watch that when it comes to the summer months.

[Kouyate in reply to CastrolColours]

Hi CastrolColours, yes they've warned me about the sun, but fortunately I'm not much of a sun worshipper x

[FlowerRose]

I'm on olaparib, but same comments as everyone here. My problems were nausea for a long time but mild and annoying more than debilitating, vomiting, headaches, heartburn. All evened out after about 6 months on it. I also had this really unusual sensation of tingling from head to toe in waves several times a day, felt like a wind chime was in my body clanking around. That eventually went away too. I figured this was all sacrificing a little bit of *quality* of life for more life, you know? 😑

[Kouyate in reply to FlowerRose]

Absolutely, just wanting to feel well enough to be able to do the things I used to do x

[Hidden]

Hi Kouyate, It took me a months & months to feel well after my second line chemo. As others have said, it might not be the parp inhibitor

that is making you feel unwell. I found the second line chemo much harder to recover from than the first. I’ve been on Olaparib since May 2019. I feel tired and not as able for things as I used to be but I work part time and I cycle a little. I’m enjoying life and feel lucky to be on Olaparib.

I think you should give it a bit more time, if you can.

I’ll be thinking of you. Be very kind to yourself for as long as possible. It’ll take a few months before you can start to feel normal again after the chemo.

Anne 🤗

[Kouyate in reply to Hidden]

HI Anne, it never even occurred to me that I might still be suffering affects of chemo too as that only finished just before Christmas x

[Hidden in reply to Kouyate]

I think it was at least 4 months before I felt that I was over all the effects of chemo. Give yourself time. The side effects get worse after every dose of chemo so the sixth one takes by far the longest to recover from.

[Lookingahead]

Firstly , I hope that you get used to the drug as others have said in their replies . Then may I ask how soon after your last round of chemo did you start the Rucaparib? My 6th cycle of chemo for a first recurrence finishes towards the end of April . My son is getting married about 22 days later and I reasoned I would be ok and over the chemo but if I start the PARP straight away sounds like I’ll be feeling pretty unwell ! At the same time , if that gives the best results I don’t want to delay starting it .🥰

[Kouyate]

Hi Lookingahead, you must be so excited about you're sons wedding I believe Parps have to be started within a certain time after your chemo, but apologies as I can't remember the exact figure. My last chemo was on Dec 14th and I started taking the parps on 18th Jan, so looks like you might be able to enjoy your sons wedding before starting them That's why I was so shocked at the side effects of the parps because during Christmas I started to really pep up because my chemo had finished and I started to feel like my old self, even went back to work full time in the New Year, but i'm only a week in of taking the tablets and having to temporarily reduce my hours (thanks to a very understanding boss!) But so far other than being tired (which I can cope with) it's the nausea I can't stand! Anyway good luck with your treatment and enjoy that wedding x

[Lookingahead in reply to Kouyate]

Thank you ! I find that about 18 days after chemo, I start to feel ‘ normal’ again and it is a little depressing to read what is ahead with Parps ! I was trying to look forward to enjoying the summer —but we all just keep dealing with everything this disease and it’s treatment throws at us so if the parps work then it will be worth it. Good luck with your treatment and I hope you start to feel less nauseous soon . ❤️🥰

[Hidden]

How are you getting on these days? Thinking of you 🤗

[Kouyate in reply to Hidden]

Hi WoolyHat, thankyou for asking things are getting alot easier now thankyou, so you were all right lol!! I still feel a little queasy most days but nowhere near as bad as before and now I don't actually vomit! Changed my antisickness so not feeling as drowsy and i've even managed to cut down on them from 3 a day to just 2 a day so hopefully things are turning a corner x

[Hidden]

That’s a great improvement! Well done! You should go from strength to strength now. You’re still recovering from chemo too. I think that you’ll feel a lot better by the summer. Be kind to yourself!

Anne 🤗🤗🤗