Rucaparib

[win_56]

Hi is anyone on Rucaparib.. My oncologist said she is going to put me on this and not Niraparb. I asked het why and she said that I won't have to come on for bloods and often re covid. She said the efficacy is just the same but I'm not convinced as I all hear of is Niraparb or olaparib being prescribed.

[JustKBO]

I am! I was taken off chemo in Covid and put on it my ÇA 125 has dropped. I don’t have any problems with it except itching. Also my kidney has started misbehaving and we’re not quite sure why. I’ll message you later because I am looking after a hot and bothered grandchild ( in my bubble of course).

[chatt2 in reply to JustKBO]

hi Ihave been on Naraparib for six months because of corvid I go to my gp practice for bloods every 4 weeks as the local hospital isnt safe, I have had very little problems and with telephone consultation whith consultant means i dont go anywhere near a hospital i would ask if you can do bloods at your gp if not why xxxx

[win_56 in reply to JustKBO]

Thank you👍

[win_56 in reply to JustKBO]

Thank you.x

[JustKBO]

Hi I’m back. Ok I’m not sure why but I’ve got in my head that Olarparib and Niraparib are for people with the BRACA gene. They won’t sanction it for people without. I don’t know why.

The actual drug gives me no discomfort e.g. sickness, neuropathy but I am still prone to mouth ulcers and I do get very tired. Mouth ulcers can be controlled with stringent mouth hygiene and I try to combat fatigue with activity rather than giving into it but it can be difficult.

After 3 weeks on the drug I was feeling good but blood tests showed my neutrophils were rock bottom and cholesterol Sky high so they reduced the dosage and my CA125 still dropped. Im due for my next appointment Tomorrow so I’ll know if the lower dose is still working.

🤞🏻🙏🏽🤞🏻🙏🏽 I know it won’t hold it back for good They have told me that, but I do hope it will give me a few years without chemo.

Who knows, this disgusting disease is unpredictable and everyone’s cancer is different. Good luck. X

[win_56 in reply to JustKBO]

Thank you for taking the time to reply. I was a little apprehensive about going on it as I had not heard of this parb before only niraparib. That's good news that your CA125 has dropped even on the lower dose and fingers crossed that you get good blood results with your CA125. It does make you wonder if the lower dosage is just as affective as the higher doseage as many people state this with niraparib. Please let me know how you get on with your bloods All the very best. X

[JustKBO in reply to win_56]

They told me that they will need to tinker with the dose until they get it right and the strength doesn’t matter as long as it’s right for the individual.

Oh I forgot to say it makes me go off caffeine and alcohol which is probably a good thing anyway. X

[win_56 in reply to JustKBO]

Yes its just finding the right dose for you as we are all individuals. I don't drink much these days I may have the odd glass of wine or G &T once a week but that's about it and when I'm on chemo I go right off alcohol. Like you say just as well cos I know we won't be able to drink a great deal of alcohol so probably won't even bother.

[JustKBO in reply to win_56]

All good thank God. My call was quite late so I was having palpitations.

[Holguin]

I am on my way to have more blood tests and to collect my first months supply of Rubraca having finished six months of chemo and scan showed a tiny something on my liver. He had always planned for me to go on Rubraca anyway so let's hope this does the trick. Couldn't believe it when the scan was revealed after all that chemo ... good luck

[win_56 in reply to Holguin]

That does seem unfair after all that chemo but hopefully the parb will sort it out and kill it!! I do really hope you get some good results with it and keep us posted on how it goes. X

[Gemmyw]

I'm BRACA negative and hoping to go on a PARP when my second line treatment finishes soon. My onc said it would most likely be Rucaparib/Rubraca and that it was at least as effective as Niraparib but had lesser side effects.

[win_56 in reply to Gemmyw]

Gemm thanks for your reply. It does appear to have less side affects than Niraparb. I've been on Facebook parbnhibitors group and sone of the ladies have stated that they have not got many side affects and some are on the full doseage and sone have only reduced doseage slightly. They appear to have had a good response too. I also got InTouch with ovacome a d they clarified the efficacy was just as effective as Niraparib. Fingers crossed we both have good response when we take it.

[Gemmyw]

I've found that Facebook group helpful too. I struggled to find anyone using Rucaparib before someone pointed me in its direction a week or so ago.

Yes! Fingers firmly crossed for us both. I have my sixth round of carbo/caelyx in 16 days and am looking forward to that regime being over!! I missed the dose of caelyx on my fifth round after having spent a week in hospital with sepsis, anemia and thrombocytopenia. Felt a bit of a failure for not managing to have it, but now just enjoying the break as Carbo only is a breeze 😌

[win_56 in reply to Gemmyw]

Hi Gem Gosh it sounds as if you've had a tough time.!! My last carbo caelyx tomorrow so know how you feel. Can't wait to get it finished too . I may be starting the Rucaparib just before you then. I'll keep in touch and let you know when I get started how's it going Good luck with your last chemo, hope all goes well.

[Gemmyw in reply to win_56]

Hope your last chemo has gone well today. Glad to hear that you've got through it! I'm counting down the days.

Yes, please do, I'll do the same. Chat soon

[win_56 in reply to Gemmyw]

Hi Gem arrived at the hospital for my chemo unfortunately it didn't happen as haemoglobin and magnesium low so now having blood transfusion and magnesium.Delayed for a week disappointed but just the way it goes!!

[Gemmyw in reply to win_56]

Sorry to hear that, Win. How disappointing. That week will fly by though. I got a real boost from a transfusion when I was in hospital very recently. I had two units and felt like a new woman! Hope it does the same for you too. The giant magnesium tablets...bleeegggghhhh!

[win_56 in reply to Gemmyw]

Yes I hate those magnesium bullets. I have to cut them on half before I take them!

[Caleda4 in reply to win_56]

Him I am being put on Rucaparib, 600 mg twice a day, although I have been told that it can be reduced if necessary. That will be mid October when I complete chemo. It would be great to know how you get on.

Good luck & take care.

[win_56 in reply to Caleda4]

Hi I will keep in touch and let you know when I start.. Wishing you all the very best too.

[Neona]

There is a few videos of Dr Rebecca Kristeleit talking about Rucaparib if you google her. She is a top oncologist in London and an advocate of Rucaparib.

[win_56 in reply to Neona]

Oh thank you for that I will definitely look at that 👍😊

[Gemmyw]

How are you doing, Win? Did you manage to get that last chemo out of the way? Been reminded of you today as I'm in having a transfusion. Darn bloods!!

[win_56 in reply to Gemmyw]

Hi Gemm yes managed to get last one out of the wsy just waiting for scan now on the 13th,fingers crossed. I was a bit down the weekend. Every time I speak to my oncologist I get reminded that it will come back and the length of time on betseen may be even shorter but there are trials that they can put me on etc etc. She has already told me this 6 months ago re first recurrence I don't need to hear it again it just brings me right down when I am trying to be positive. I haven't even hsd the results yet of this recurrence let alone stating it will come back!! Yes I know the score but let's just take one day at a time ! When they gave me my last chemo after week delay re blood transfusion when I went the following week the nurse said your s little aememic I'll have to ring your oncologist to see if you can have the chemo. I said I only had blood transfusion last week. Any how it went ahead but I know my bloods are coming down again as I get symtoms of dizziness and feel tired all the time do will prob ring up.the red card and get bloods checked. How are you doing,?

[Gemmyw]

Doing ok, ta. Been a funny few days with daily blood tests, a bag of platelets, two of red cells and a fair few Filgrastim. Back to the hospital again tomorrow for yet another test. My platelets were 11, went up to 40 the day after a transfusion but have dropped down again. Last chemo was due Thurs just gone and it doesn't look likely for this week given they need to be 100 minimum. Just want it over with as I know you'll understand!

Know what you mean about the recurrence reminders. My GP called me in for a cancer care review a couple of weeks ago. I told him I'd been discharged from hospital about ten days previously after treatment for an infection. He said "I wasn't aware that you'd had a crisis. Have you had any thoughts about end of life care?". Now, I am stoic enough to realise that it's something I might need to consider earlier than most 42 year olds and that, in all likelihood he just has a checklist of things he has to ask, but he could have put it a little bit less bluntly. I don't blame them for doing it really, I'm sure that no amount of training can prepare for having those sort of conversations. We're all different, but I'd rather prepare for the worst but hope for the best rather than be under any illusions. It must be tempting to give unrealistic expectations in their position so maybe using words that seem harsh is a coping mechanism to somehow distance themselves. Who knows.

So sorry that you've been feeling down and I'm sure that you will have heard all the platitudes that I can trot out a dozen times already. Needless to say, all of us here, have been (and will be) there.

Feeling dizzy and tired needs to be checked out, so I hope you've given them a call already!

I'm so glad that you've had your last one and have a date for your scan. Wishing you a good result so you can get going with that Rucaparib.