Rucaparib availability in Scotland - your comments needed

[OvacomeSupport]

Hello All

The Scottish Medicines Consortium (SMC) are considering making Rucaparib available as follows: "As monotherapy for the maintenance treatment of adult patients with platinum-sensitive relapsed high-grade epithelial ovarian, fallopian tube, or primary peritoneal cancer who are in response (complete or partial) to platinum-based chemotherapy".

If any of you have experiences with Rucaparib that you'd be willing to share for inclusion in our submission to SMC, please could you either comment below or send me a private message?

I won't need to include any identifiable details such as your name or where you're being treated. You don't need to be living in Scotland or treated there.

I can then include your comments in our submission to request Rucaparib be made available and it will make for a much stronger submission. I know from our involvement with SMC in the past that they put a lot of importance on patient experience.

If you have any queries please do get in touch.

Thank you in advance for your help,

Anna

Ovacome Support

[Rachael47]

I now live in Scotland, and was prescribed Rucaparib last October, as a maintenance drug after carbo/taxol. For about six months I felt better than I had since my original diagnosis in 2016. However, it has been clear since July that is becoming less effective. I am awaiting the results on CT scan to confirm this. I regard the six or so months It was working as a gift. I hope the SMC will make the drug available to suitable patients.

[OvacomeSupport Partner My Ovacome Team in reply to Rachael47]

Thank you Rachael47, that is very helpful.

Best wishes

Anna

[Doodledays]

I am currently on weekly pacletaxol 3 weeks out of 4 snd fortnightly bevacizemab for last 11 months. Last 3 CT scans show NED from previous retro peritoneal lymph nodes. I was platinum resistant HGS. I viewed Dr Susana Banerjee’s video presentation at a recent Ovacome day and she said, toward end of excellent presentation, that platinum resistant/recurrent:refractory terms were being discouraged and trying to make PARP drugs available to more women. Did I read her wrong?? I am one of I’m sure, a smaller group of women who was initially stage 1, full gynae oncologist surgical removal at regional hosp Dec 2017 & treated at local district general with carboplatin only .(and even that was optional from local oncologist! ) I knew it hadn’t fixed it asked (pleaded) for CT scan October 2018, which sadly proved correct. I am BRCA neg also. Instead of going back to work it was urgent retirement due to stage 4 and 6-9month prognosis with or without treatment and not curative. I continually ask about potential options to try as I have exceeded expectation so far but think it’s on way back. Apart from calyx, which terrifies me I have nothing and Dr Banerjee’s enthusiasm and video seemed more hopeful. I feel increasingly tired and desperate and, to be honest, a bit abandoned in north of Scotland. This is not a reflection of care and time from local team but feel out on a limb. Is there any chance this could be a drug I could be considered for???

[OvacomeSupport Partner My Ovacome Team in reply to Doodledays]

Hello Doodledays

I'm really sorry to hear how you are feeling. You didn't misunderstand Dr Susana Banerjee but currently PARPs are only routinely available via NHS Scotland for those with platinum-sensitive disease.

There may be PARPs or other drugs available through clinical trials. Have you thought about asking for a second opinion or a referral to a trials centre? Both Edinburgh and Glasgow have specialists and researchers in ovarian cancer working at their oncology centres - Professor Charlie Gourley in Edinburgh and Dr Ros Glasspool at Glasgow. Your consultant could refer you to see if they would suggest any different treatment approaches.

If there is anything you want to talk through or any information you need, please do get in touch with us. You can direct message us through the forum or call 0800 008 7054.

Best wishes

Anna

[tarney]

Hello Anna- I am an almost 70 year old female living in the USA, now on Rubraca (Rucaparib) 300 mg, one pill twice a day. In the past few months, I started with Rubraca 250 mg, 2 pills twice a day, then was reduced to 200 mg, 2 pills twice a day. These reductions were due to platelet and red and white blood counts that were not within acceptable ranges. However, I am doing better now and hope to continue with Rubraca because it is one of my best tolerated onc meds ever. Since my diagnosis of stage 3 OC in the Spring of 2016, I have been on Carbo/taxol and later, after recurrence, carbo/doxil. I was very ill with many side effects on both of these treatments.

Recently, after taking Rubraca for a few months, I received what I and the hospital felt was a positive review, i.e. slighter smaller tumors and better platelet and blood counts. Another big positive is that I am not bed ridden and am able to continue my new normal life with much fewer side effects. Most problematic is tiredness (not to the point of exhaustion) and lack of motivation. I am blessed to be able to take Rubraca and look forward to continued improvement. Theresa

[Helen25]

I have been on Rubraca for almost a year, longest time without chemo as I have had ovarian cancer for 6 years and treatment every year because of recurrences. I have been so blessed being on this drug and had a good quality of life, I am 70 with 6 grandchildren they are all still young, so I can still enjoy my life please keep this drug going so other ovarian suffers can have quality of life without chemo.