Rubraca feeling not too good

[win_56]

Just s quick update. Been taking Rubraca full 1200mg doseage since Wednesday. This morning took my meds at 8.00, am was not feeling too good. 9.00am being physically sick. Starting on the anti sick meds just hope it brings it under control. I have heard that the first few months are the worst so I'm hoping this is going to be short lived.😖

[Broader]

Feel for you, hope you start to feel better very soon

I haven’t had that drug so unable to comment, sorry

Take care

Christine x

[win_56 in reply to Broader]

Thanks Christine.

[OvacomeSupport Partner My Ovacome Team]

Hello win_56

I'm sorry to hear you're feeling unwell and have been sick. Your team will be able to offer you some advice about managing your symptoms and there may be other medications that would help, so do contact your Clinical Nurse Specialist or other point of contact at the hospital if your symptoms don't resolve or if you're concerned.

If there's something that we can help with, or if it would help to talk anything through, please get in touch with us on 0800 008 7054 or 07503 682 311 or at [e-mail].

Best wishes

Julia (Ovacome Support)

[win_56 in reply to OvacomeSupport]

Thank you Julia. I've left a message for my CNS

[Caleda4]

Oh dear, I feel so sorry for you and hope that the anti sickness meds work quickly and that you feel better soon. x

[win_56 in reply to Caleda4]

Thank you. Feel a little better. Just anxious now taking tonights dose.

[delia2]

Hi. I would try to stay ahead of the sickness by taking the antinausea meds on a regular basis ahead of taking the PARP. xx

[Holguin]

I was on the strongest dose of Rubraca for 6 weeks, but felt so awful that I was taken off them. Two weeks later I had 3 monthly scan which was not good and on 1st Dec I start 3 weekly Taxol and 4th week Avastatin. Am not looking forward to that, especially hair loss for the second time so will try cold cap to start with to see if I can take it for 6 months! Good luck with Rubraca which I hope you will be able to tolerate.

[win_56 in reply to Holguin]

Hi I am not NED from my last chemo session a few months ago do think at the moment git no choice but to try it and hopefully it will keep the beast stable. I will have it s few months but if I don't feel well still will try a dose reduction. I'm due for s scan soon as I said to oncologist how are we going to tell if this working or not as my CA125 was only 3.4 on recurrence and was only caught in incidentally as they ordered a scan as I had backache which was not connected to the recurrence I was so lucky in one way that I had the backache.I am so sorry to hear that Rubraca did not work for you and that you have to go back on chemo this disease is so relentless I hope and pray every day that they find a cure for us all. 🙏 Prayers for you that you have good results and knock this beast into touch. X

[JustKBO]

Thats quite a high dosage. It didn’t suit me either so they lowered the dose and all is well. I was advised to take it 12 hours apart and if possible one dose before sleeping. That also works for me. It makes me tired and I need to drink a lot as dehydration makes me nauseous. Good luck.

[win_56]

Thank you for your reply. May I ask how long you was on it before they lowered the dose and what dose you are on now. Are you Brca and was you NED before you started Rucaparib?

[Caleda4]

Hi Win, I hope that you are ok. Are you still taking rucaparib? I started taking them last Friday and only took them for two days, as I felt dreadful,so my Oncologist has lowered the dose by half which is much better thankfully. I am hoping that they will work on this dose so that I don't have to have them increased again.It would be great to hear how you are getting on. Take care, Caleda x

[win_56 in reply to Caleda4]

Hi Caleda Ive not been without issues on Rubraca. My stomach started cramping and the fatigue set in and generally not feeling well. My oncologist lowered my dose to 500gm twice a day felt better but had to go in yesterday to have my bloods done and platelets and hemaglobin have dropped significantly and she wants me to go in Monday for another blood test. If bloods have dropped again then I will prob be taken off the parb for a week or two then go back on on a lower dose. My only concern is that if I go on the lower dose us it going to keep the cancer stable in my lymph nodes as I still had cancer left on them and was not NED......Hope you get on well with them but it does seem a lot if people have probs with the bloods at first and have to have the dose tweaked till they get it right. I'll keep you posted on Monday to see if my bloods have gone down further and what they have decided to do. Was you NED after chemo? I really do hope you have minimal side affects and do well on this parb.x

[Caleda4 in reply to win_56]

Hello Win, I have only just caught up with this. There do seem to be quite a few problems with the high doses of this drug. I hope that your bloods have recovered. I was not NED when I finished chemo, my CA 125 was 18 , so like you I am not certain about a lowered dose of this will work. I am due for a blood test on the 30 Dec. & then a telephone consultation on the 31st which could prove interesting. I just have a gut feeling that they will want to increase the dose. I will let you know what transpires.

[win_56 in reply to Caleda4]

Hi Caleda was taken off Rubraca as my platelets took a beating. Been off them two weeks tomorrow. My Oncologist said that the majority of her patients have had issues with platelets crashing so she is going back to issuing Niraparib. When my platelets cone back to 100 I am going on Niraparib 200mg. I'm going to have my bloods done Wednesday 30th see how it goes. What dose are you on now?

[Caleda4]

Hi Win, That is interesting, about other peoples platelets crashing. I wish you luck on Niraparib, please let me know how you get on. Good luck with your bloods on the 30th,same day as me. I am on 300mg twice a day ,but the problem is I am wondering if will it work on this half dose. Happy New year to you. Let's hope that 2021 will be a better year for all.x

[win_56 in reply to Caleda4]

Hi Caleda I'm going to go in and have my bloods done be in the morning as I have a telephone appt with oncologist bin the afternoon. I'm going to ask her why she just doesn't lower the dosage instead of change parb. I hope my platelets have gone up fingers crossed. Good luck with your appt too on Wednesday and i would mention your concerns about the doseage with efficacy of the parb. I know how you feel as I am worried if my cancer is stable too. I will let you know how it goes. Wishing you a happy new you too and let's hope we all have a better 2021 health-wise.x