Rucaparib, info and experiences please

[bamboo89]

I've had 4 doses of carboplatin - this knocked down my CA125 from 1190 to 90 after the third, don't know if its gone down again since my last infusion 10 days ago yet. The cancer was active in lymph nodes in the mesentery, pelvis and peritoneum; I had a CT scan after the third infusion which showed all lymph nodes back to normal size with no other evidence of cancer; at that point, the Oncologist suggested that I stop at 4 treatments and start Rucaparib instead, and is calling me in a week to make the decision.

It's a bit complicated because I had my debulking surgery in January, 2018, then refused adjuvant chemotherapy. What they found in terms of the cancer was thought to be epithelial serous but they didn't know if it was high or low grade because most of it was non small cell neuroendocrine cancer, thought to be differentiation, and it was Stage 4b. After removal of some lymph nodes in July last year, they finally were able to confirm there was epithelial serous, and it was high grade, which of course responds better to chemo, but I still refused chemo.

In March just as lockdown came, I agreed to carboplatin to see if it would clear my ascites, because at that time, my hospital was not carrying out draining, and the Onco felt I would have a good response to the drug to clear the fluid, which it has.

All I know about Rucaparib is its a PARP inhibitor, that it will apparently give me diarrhoea and fatigue for up to 3 months, and may cause anaemia. I'd like to know if anyone else has taken this drug, what the side effects were, whether it got easier over time, and most importantly, how effective it was or wasn't at restraining the cancer. Also, in the light of Covid19, does it mean I'll be stuck indoors isolating all the time I'm taking the drug, because I really am not sure its worth it if I have to continue with shielding for months on end... especially now that palliative care services such as draining have been restored.

Any advice and experiences would be welcome

Miriam

[delia2]

Hi Miriam. I have been on olaparib for eleven weeks. I think the risk of low blood counts is slightly lower. My oncologist started me on a lower dose (the dosing is different from Rucaparib but what I take is two thirds of a full dose). She did it because my platelets were seriously low on doxil and carbo which I had for my first recurrence. I found I had mild nausea for six weeks and then it petered out. I would take one anti-nausea pill in the morning and feel fine. I was very tired but in a manageable way. IE I took an afternoon nap everyday at first. Now I might do that one or at most twice a week. Otherwise I feel great. I'm exercising more than I have since diagnosis. As of my first two blood tests my counts were very good. I'm sure I'm not anemic because I feel it when I am. I have a CT scan tomorrow so then I'll know how it's working. It's definitely much more pleasant than chemo! Do you know if you have Homologous Recombination Deficiency? That increases the odds of its effectiveness. Your positive response to Carbo is a good sign.

[bamboo89 in reply to delia2]

I don't know what Homologous Recombination Deficiency is! Another thing to research... thanks for your response,I'd be very interested to hear how effective its been after you've had your scan. - fingers crossed its good, but I'd like to know either way. Seems Olaparib is more commonly prescribed than rucaparib...

Miriam

[Lindaura]

Dear Miriam,

I am just going to give you the benefit of my experience.

At my first recurrence, I had six rounds of Carbo and Caelyx.

At the end of this, my CA-125 was down to 15 from 600.

But the CT scan showed the tiniest nodule left on my Peritoneum after this treatment..

I was very excited to go straight onto Niraparib, another PARP, as I am BRCA1 positive.

We thought the PARP would destroy that tiny bit of cancer and keep me cancer free forever.

It didn’t.

Instead, my cancer continued to progress.

In retrospect, I wish I had begged for just one more cycle of the Carbo/Caelyx.

That’s my story.

Good luck with yours.

And best wishes,

Laura

[bamboo89 in reply to Lindaura]

thanks Laura - am sending you a private message..

Miriam

[JustKBO]

Hi Miriam I was diagnosed with stage 3c serous High grade in October 2017. I had a debulking op And then 6 cycles of Carbo Taxol after which my ÇA 125 was down to 10 and I was NED until November 2019.

Following another debulking where the cancer was spreading I had 4 cycles of Carbo Caelyx which was then stopped due to Covid and I was put onto Rucaparib 600mg x2 per day. I was a bit breathless and tired but felt quite good and was surprised when After three weeks my neutrophils crashed and my cholesterol shot up.

I was taken off the the drug for a rest. My bloods recovered so I was put back on Rucaparib but the dose reduced by half.

I have to say the drug is much easier to tolerate than chemo. I do have fatigue but that’s ok a snooze now and again is quite nice and it doesn’t stop me getting on and doing things I like doing. I’m not nauseous, food tastes fine. I get a bit of itching and today I have little red patches in the palms of my hands- could be the hand sanitiser.

I had a stent because of damage to my urethra in the debulking op and recently my kidney became swollen and lost function. I now have a nephrostomy. The thing is what caused the kidney problem ?

My oncologist doesn’t think it’s the Rucaparib although I have read a study that says kidney function should be monitored. The urologist can’t find any explanation why my kidney swelled up. I’m hoping it’s going to be ok now I’m on a reduced dose of Rucaparib.

I had bloods taken today and I have my appointment with the oncologist tomorrow fingers crossed everything is still moving in the right direction.

I am not a hermit and am not rigorously shielding but I am careful, I stay 2 metres from strangers, wear a mask outside, avoid supermarkets and public transport and only meet my children and grandchildren mostly in the garden. Sorry this is so long. Hope it’s useful. Let us know what you decide and how you get on.

[bamboo89 in reply to JustKBO]

Thanks for your response. I'm intrigued by the cholesterol thing - I already have mild hyper cholerestemia (not sure how ot spell that) which means higher cholesterol than it should be, its always been like it, its a family thing (my sister's is much worse, very high indeed) so I need to query that to see if rucaparib is going to make that worse. Also slightly concerned because I notice from the bloodwork that carboplatin is affecting my red cells and hg much more than it is the white cells,which oddly remain just within normal range, which might mean the rucaparib gives me big trouble on the red cell count... Also, are you able to send me a link to the study regarding its effect on kidneys?

As for shielding, I do all the things you do but I really miss having my sister to stay for the weekend every fortnight as well as having my son over for dinner every other week on a Sunday - I live alone, and at my age, am well past the clubbing and pubbing stage, but nipping out to the shops or a cafe or whatever was an important way of breaking up the monotony off daily life... the thought of simply carrying on the way I am now in terms of isolation because of the drug brings into the limelight the question of quality of life set against quantity... that is something I will need to think carefully about. Though in truth, this virus is not going anywhere, so a 'normal' life won't be possible for some time, drug or no drug.

On the subject of living alone, I have to say lockdown has been infinitely more bearable because I live alone, lord knows how other people coped with the strain of constant exposure to their partners/family if they were not already used to it... every cloud and all that! If my husband was still alive (and assuming we were actually living together, which we hadn't for some time after retirement and prior to Covid, though we saw each other frequently & regularly) we'd probably have killed each other after the first fortnight🙂😗

Fingers crossed for a good result on both your bloods and the drug's efficacy...

Miriam

[Iside in reply to JustKBO]

Hi, Am intrigued to learn why you were put onto Rucaparib when there was still evidence of disease? My reasons are, having finished 6xcarbo platin/Caelyx & CT scan showed my condition had Stabilised , CA125 going down slowly, now at 85 from 193. I am now being refused Niraparib cos I am not NED, however I fit all other criteria !!! Is Rucaparib given when the OC is stabilised or when chemo has finished, cos from the letters I have read no-one mentions NED as a reason for starting it? It is never a straightforward path I realise that but I find it interesting to read of such varying methods of combatting this pernicious disease. Stay strong and safe, Iside X

[bamboo89 in reply to Iside]

In the UK, think Niraparib is for BRACA positive OC only, whereas Olaparib and Rucaparib can be offered for later stage cancer that has recurred, after chemo for that recurrence. That's my understanding anyway, at the moment.

[Iside in reply to bamboo89]

Hi, Thanks for your prompt reply. Niraparib is now being given to those who are not BRAC2, but because am not NED, am therefore not eligible!!!! However I have been reading about Rucaparib, used as a maintenance drug, & have not seen this NED requirement? Am going to speak to Onco about it. Stay strong Iside X

[bamboo89 in reply to Iside]

As far as I'm aware, rucaparib and olaparib are sort of interchangeable in that you might be prescribed one or the other, if you meet the criteria. But maybe I'm wrong, maybe its olaparib that's restricted to BRACA, not niraparib, I get those two mixed up...

[JustKBO in reply to Iside]

Sorry if I misled you, i can’t have worded my post very well I didn’t have any evidence of disease when I started it.

I had a recurrence in November 2019. Second debulking and when recovered started chemo Carbo and Caelyx. After cycle 4 a scan showed nil evidence of disease and CA125 of 15 which is my norm. Because of the dangers of CV19 and because there is no evidence to say 6 cycles would have made any more of a difference I came off the chemo and 6 weeks later still NED, went onto Rucaparib. Hopefully it continues for a good while.

[Iside in reply to JustKBO]

Thankyou for the explanation, I don't think I am eligible because my condition has stabilised but not NED., CA125 reduced from 169 to 85.!!! Hey ho here we go again on the roller coaster, will have to make do with monthly bloods & Onc chats & when it does rear it’s ugly head again back to CT Scan & possibly yet another round of chemo !!! At least I am coping fairly well and have nothing to complain about, plus am on a Protocol regime which am tolerating well, fingers x for a pleasant quality of life in spite of Covid-19. Iside X

[JustKBO in reply to Iside]

What is a protocol regime?

I’m not feeling good today have nagging aching backache I have a stent and nephrostomy so I’m hoping that is the cause and think I’ve probably overdone things.

Keep on keeping on.

Xxx

[Iside in reply to JustKBO]

Hope your feeling better, remember be kind to yourself & don’t overdo it!!!! Protocol is a group of drugs I take through the CareOcology Clinic in London, they are existing drugs used for other purposes but I tolerate them well. My Onco knows about them & doesn’t dissuade me, they won’t cure me just hopefully extend my life!!!! Who knows, there isn’t a right way, we are all the same but different in so many ways.

Iside X

[PhillipandBettykid]

I was diagnosed with stage 4 in 2014. Had a bit of a remission after all the treatment and surgery and since then have been on a variety of chemo. The last lot was Caelyx which nearly killed me. They now have me on Rucaparib. It took a bit of tweaking of the dose because I found some of the side effects a pain. I have a stoma but didn’t have diarrhoea too much. The worst was my mouth and taste, which of course affected my appetite. They lowered the dose and things are much better. My CA125 is slowly going up and the tumours in the liver and abdomen are growing little by little. The Rucaparib just slows everything down so I can manage. The fatigue is always an issue. It is hard to know whether it is the disease or the treatment but I suspect it is the latter. I take dexamethasone every 3 days so at least have 1 day of energy. I have decided that I can’t cope with any other form of chemotherapy anymore so the PARP inhibitor route is good for me.

I have been shielding since March but to be honest with my level energy, it hasn’t been a problem. I have had help from friends and family. I am allowed out for blood tests, and have my monthly oncology appointment by phone. I recently got a letter from the government saying ‘shielding will be paused’ in August so you wouldn’t be isolated for too long. I can also meet outside with up to 6 people or have a bubble with another family. I have a garden and so it has been great to see people face to face.

I would go for it. If you have a palliative team like mine who look at quality of life as well as treatment you might find it has a good effect.

[bamboo89 in reply to PhillipandBettykid]

Thanks for your response. It points up to me that I should be asking why he's offering rucaparib after 4 cycles of carboplatin. I don't know if he's thinking palliative only (its the Oncologist, not the palliative team,, who has suggested this) or if he's hoping it might give me a lot more time. I'm also curious as to whether he's offering it to reduce the risks of catching Covid through having to attend the hospital frequently to get the chemo and bloods done... lots of questions to ask, I need to make a list!

As for shielding, I, too, got that letter recently from the Government, but quite frankly, if the last 3 months has taught me nothing else, it has taught me that listening to the government's advice is a pointless exercise. I look at WHO and SAGE advice, and watch Dr. John Campbell daily on Youtube, and I signed up for the Zoe Covid symptom/tracker app run by Kings hospital, which gives a much more realistic assessment of the true state of infection rates, from which I am able to deduce that, whatever the government says, the risks are more or less as great now as they were 3 months ago, largely because we have no efficient/effective means of tracking and tracing in place. In terms of shielding because of cancer treatment, my oncologist has categorically said I should continue with that all the time I am having treatment, regardless. Should I choose to stop treatment, after 6/8 weeks, then I am at no more risk than anyone else of catching Covid, so its the treatment that makes us more vulnerable.

Miriam

[January-2016-UK]

I would ask your oncologist why he is suggesting stopping at 4 chemos rather than 6 and press as to whether it's because of COVID-19 difficulties. If COVID-19 were non-existent, would he normally be suggesting six infusions. If it is, you need to decide the risk of perhaps catching COVID-19 while attending hospital for your infusion (you may live in a high risk area). If you did have six cycles, would he still recommend Rucaparib to follow?

[bamboo89 in reply to January-2016-UK]

Thanks - yea, that question's already on the list, though I never intended to have the sixth infusion anyway, not because of the risk from Covid, but because chemo's likely done all its going to do certainly by the fifth, if not the fourth. The question for me is whether there is any benefit to having the fifth, which there might not be, given the damage to normal cells that chemo causes. I knew that 4 were critical to have, so I've done those. I am curious though - initially, he said to me 4 infusions, but when I signed the consent form on the day, it said the standard 6, so quite why he said 4 to me is a burning question. I wonder whether he always intended to offer rucaparib, and you have to have had 4 chemo infusions to be given that drug, or was he thinking about the risk from Covid...I shall be asking! But the real decision is around rucaparib itself - seems not that many people on here are taking it, so difficult to get a picture of its effectiveness.

Miriam