Rucaparib side effects

[govanhill]

Hi

I have been on rucaparip for 15months was diagnosed in 2007 and now have brain metastases .Have been doing well but have recently developed tingling and itching in both arms. Wondered if anyone else had these effects from a parp

Thanks Morag x

[Caleda4]

Sorry I cannot help you, and sorry to learn of your brain Mets.I started on this drug last week taking 600 mg in th morning and 600 mg in the evening. Anyway I only took that dosage for 2 days, and I am now on 300 mg twice a day which is much better.

Can i ask what dose you were on please. Many thanks, Caleda.x I hope they get things sorted for you soon.

[govanhill in reply to Caleda4]

Am taking 500mg twice a day. Dr doesn't think it's side effects as they would have started straight away. Did you have side effects from the higher dose? Thanks for replying

[Caleda4 in reply to govanhill]

Yes I did have quite bad side effects first of all with1200mg per day. I felt really shaky,could not eat, hot flushes which I do not expect at the age of 75. With 600mg per day I seem ok,fingers crossed but this is only my 3rd day on this dose. However I only hope this dose will work. Thanks for your reply. Take care and let me know how you get on.

[govanhill in reply to Caleda4]

I will thanks . Have hot flushes too but the itching is a new thing Thanks for replying

Hope you feel better on the reduced dose.x

Morag

[Caleda4 in reply to govanhill]

Thank you.

[Lizzieanne in reply to Caleda4]

Hi Caleda I am starting rucarapib this week and I said to onc that dosage would be far too high for me as I only have to take half a paracetamol and am usually sorted. But she says I have to start on the high dose. Sorry I digress what I wanted to ask is did you put yourself on lower dose and then told onc or were you told to take lower dose. I am also 75 and feel I know my own body by now. Thank you

[Caleda4 in reply to Lizzieanne]

Hi,I am sorry but I have only just seen your post. I actually told the Oncologist that I wanted to stop taking this due to the side effects. She told me to take a break for 4-5 days which I did & then suggested I take the 300mg twice a day. For me this has been ok so far. I am due a blood test on the 30 December & a telephone consultation on the 31st,so I will see what they say. I suspect they may want to put the dosage up which I am not really happy to do.

How are you getting on with this parp ?

[Lizzieanne in reply to Caleda4]

Hi Caleda4 My onc rang to say my bloods showed my immune system was low so had to let me pick up and as it was so close to Christmas she said I neednt start to take this until after Christmas so today 28th I have to start taking this. Have just had my breakfast and will take my first tablets in a minute. Have had a restless night worrying how I will react. Have been feeling so much better since last chemo, walking whenever weather permits. I really feel for you. I will let you know how I get on and it would be lovely to hear how you are doing and if your bloods are ok. Sending positive thoughts to you and thank you for sharing your experience with me.

[Caleda4 in reply to Lizzieanne]

Hi Lizzieanne,I was like you after I finished chemo,I felt really good. We try to walk as much as possible weather permitting.

I wish you luck with with starting today on the tablets. Do keep in touch. x

[Lizzieanne in reply to Caleda4]

I will. Really appreciate having someone who to share our experiences. I wonder if we are offered this to prolong our life and if so for how long. If we didnt would our cancer stay in remission for a while. I ask because of my 18 year remission with no treatment and they were always amazed at the hospital. Dont expect that sort of remission but wonder how my body would respond with no treatment. First time there was no spread just cells that had escaped into my blood stream from op. Suppose an impossible question to answer. Hope all goes well on 30th and 31st. Do let me know. Just read your profile you have certainly had a tough time x

[Caleda4 in reply to Lizzieanne]

Yes it is good to discuss things with someone else in a similar position. I think that these drugs are offered to lengthen the time between chemo if required, but it does make you wonder how long you would go without these though before another recurrence. My problem is that because I am high grade serous, this is generally more aggressive and also my age of 75. I am a pretty determined person, but my thoughts are that if these drugs make me ill then is it really worth it. In general I have always been fit & on no other medication so I suppose that is a bonus. I am the first person in my family to have cancer so it was a huge shock. I do have a very good Oncologist and she is always prepared to listen. Having said this I am dreading my consultation as I feel certain she will suggest increasing the dose.

I hope that you are feeling ok. x

[Lizzieanne in reply to Caleda4]

I have high grade same as you and am also 75 and again very fit and active and take no medication. Think if we hadnt ben so 'robust' we might not have been given the chance to have this drug. The 31st will soon be here and your oncologist sounds very receptive so perhaps if she asks that you increase the dose that you suggest going up very slowly/slightly in dosage and stopping when it becomes a burden. When you read the US reports a lot of ladies start low and work up which sounds a good way to do things. I do wonder if to get this drug at a certain cost from drug company the criteria is that the NHS start a patient at highest dose. Will be thinking of you.

[JustKBO]

Hello I tingled under my one arm fir a while and that has stopped but now it’s my right groin and upper thigh itches and tingles and drives me mad! You are doing so well 2007!!!! I’ve been on this drug for 6 months ans so far stable but I’m getting increasing hip and lower back pain which worries me.

[govanhill in reply to JustKBO]

Thanks for replying. I am due to have a phone appointment on Monday so will ask about it then. It feels like prickly heat in my arms without the rash. I hope you get some relief from your groin and back pain Moragx