Rucaparib

[sarah040866]

Hello ladies, is there anyone else on Rucaparib and experiencing major fatigue? I take 300mg twice a day am/pm.

Increased ca-125 from 66 to 113 to 160 in 3 months, went for a CT scan today to see if there is disease coming back. Awaiting phone call from my oncologist or appt

I’m stage 4 OC

misdiagnosed in 2018/2019 after being treated for water infections by my GP for a few months, numerous antibiotics given, finally sent for an ultrasound scan in March 2019, tumour found on scan, fast tracked for debulking surgery 4 weeks later.

[BadgerBright]

Hello Sarah040866 Really sorry to hear about your misdiagnosis. This disease seems to take Drs in many wrong directions. Sadly, to our detriment. To the main point I was on Rucaparib for 18 months. I started on the highest dose which I could not tolerate. Eventually I was put on the lowest dose after some time. I was tremendously fatigued on this drug and this was due to my falling haemoglobin levels. Sometimes falling to 71( the range starts at 115). So I had blood transfusions every 6 to 8 weeks. Which restored my energy levels well. Other than this I began to tolerate the drug at the lowest dose very well. You must be having regular blood tests I would have thought so low hb might be a cause. I also take 210mg of Ferrous female ( iron tablet) every day as I am vegetarian. I also found resting up a few days ( I am retired so easy to say) conserved energy for me to use when I could go out and indeed do some light exercises.

I know we all react differently to our treatments but do hope you find a cause or at least a way of coping.

Sending good wishes for less fatigue. BB. x

[sarah040866 in reply to BadgerBright]

Thank you for your reply, my Rucaparib dose is 300mg x 2 a day morning and evening I have no idea if this is a high, med or low dose…

My bloods were checked recently on a full blood count and everything looked ok according to my nurse, so they can see nothing that may be causing the fatigue. My ca125 level has gone from 66-160 in the last 3 months, even then my nurse didn’t seem worried, BUT I WAS! I asked for a scan and she said she would speak to my oncologist, next thing I know I’m getting a call from the appointment team booking me in for a scan, I had that on 14/9 and have heard nothing as yet…I guess they will leave me hanging over the weekend for the results. I’m really scared it’s my cancer coming back, 15 months ago I had surgery to remove 6 lymph nodes so I’m thinking maybe there are some more??

I hate how they just leave you waiting…I’ve bitten all my nails off, it’s so stressful and people have no idea what we go through. Xx

[BadgerBright in reply to sarah040866]

Hi My understanding is that the highest dose of Rucaparib is 600mgs x2 daily. With reductions coming down 500, 400 and then 300. I went through all the doses.I feel your anxiety about waiting for news of a scan it is one of the worst things about all of this. Nothing can really take this away and I can only send my heartfelt support during your wait. In the meantime I do not know if you are in the UK (as I am) but I find talking to my specialist gynae Macmillan nurse very helpful during these periods of anxious waiting. Your Oncologist may and I do mean may be willing to see you on the basis of just seeing the scan without the actual radiologists report which always takes longer. This might be worth a try.

Hope you manage to get some news very soon. Will be thinking of you. BB. x

[sarah040866 in reply to BadgerBright]

Thank you for your reply BB I’ve only just seen this! So sorry…

I went to see my oncologist today and my CA-125 has risen for the fourth month in a row to 650, so my oncologist now wants a CT scan and MRI but I have to wait now until the new year. I’m so anxious and all I can think of is that it’s re-occurrence for the 2nd time.

I knew in September that something didn’t feel right but until I get the scan and results I won’t know for sure. I am on Rucaparib x 4 a day 2 in the morning and 2 at night (300mg per tablet)

I assume they aren’t working as numbers still rising, but my onc has said to keep taking them until the scan is done and we know what we are dealing with. Not a very nice Christmas present, but I was told that CA-125 could be down to something else as my scan was clear in August 2023….so the wait starts 🫤