Dilemma: I’ve seen my consultant today who tells... - My Ovacome

My Ovacome
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Dilemma

Alifit
Alifit

I’ve seen my consultant today who tells me that I am eligible for Rucaparib. Good news, but it has left me with a dilemma.

Ever since I was diagnosed with PPC in June 2016, I have been philosophical about the likely outcome of treatment - recurrence - treatment and so on. After Carbo/Taxol and the big op, I had Avastin - half way through my CA125 started to go up leading to my first recurrence and second line chemo in June 2018. I have no idea how well the Avastin worked and if, indeed it made any difference at all; I was lucky with side effects, only having headaches and raised blood pressure.

This week I have been researching the benefits and side effects of Rucaparib - I’ve not really found any definitive evidence to sway me either way.

I would have to start Rucaparib at the end of next week and need to be seen two weekly and then monthly. So, my dilemma is whether to go ahead and take the drug and potentially having side effects or to give myself some time drug free but losing the opportunity to have a drug which may give me 4 to 5 more months.

I would welcome any opinions from the lovely people on this brilliant forum.

Lots of love to all, Ali x

25 Replies
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I'd be inclined to start Rucaparib treatment thinking that if the side effects become more than I'd rather tolerate, I could always stop the treatment but obviously In the hope that things would at least remain stable, if not improve, for some considerable time. Whereas, if I didn't start I'd not know whether I might have been side-effect free.

All the best, whatever you decide.

Thank you Helen, I think I’m struggling with having to start immediately when I had hoped for a break, however small.

Love and best wishes to you, Ali x

I agree with Helen. This is a promising new drug that the NHS is just getting its head around.

It may have more severe side effects than Olaparib or Niraparib, but studies have shown it to be just as effective in halting the cancer.

So, it’s not a matter of months, it could be years - and even though it has side effects, they will be much less brutal than either the cancer itself or the other regimens you have already been on.

So go for it!

Best wishes,

Laura

Alifit
Alifit
in reply to Lindaura

Thank you Laura - I’ve got lots to think about.

Love and best wishes Ali x

Hi Ali. I guess it all boils down to quality not quantity of life between bouts with chemo. As you may know, I’ve recently started Niraparib after third line chemo. I’m giving it a go in the hope it will help but if I find the side effects are affecting my quality of life, I intend to stop taking it. All the best with your decision making. Love Jo xxx

Alifit
Alifit
in reply to ShropshireJo

Thank you Jo - I know I may not have the side effects, but I was hoping for a break from any drugs. If I could have a month or two before I started then I would do it, but I have to start within 8 weeks of my last chemo. If you don’t mind me asking, are you BRCA positive to be able to access Niraparib? Did you have to have a particular reduction in your CA125. How long after your last chemo did you start the Niraparib?

Thank you for your support, love Ali x

ShropshireJo
ShropshireJo
in reply to Alifit

I understand now and I know what you mean about a few drug free months. I’ve felt like that a few times. I’m BRCA negative and my CA125 was never mentioned during the discussions about Niraparib. That could be because it has never been a good marker for me but from the CT scan the oncologist was pleased with my response to the third platinum based line of chemo which I finished mid October. I initially started Niraparib within eight weeks but had an accident after a couple of days and had to stop to give my body a chance to heal. I started again on Boxing Day, a few days after the eight weeks was up. OK so far! Hope this helps. Love Jo

I was refused Niraparib because the standard is that your CA125 has to have reduced to 10% of what it was before platinum-based chemo. Mine never rose above 90 ever, so couldn't pass that test. I'm on Rucaparib, nothing like as bad as chemo although the insomnia is dire, however I slept nearly 7 hours last night according to my fitbit, which is far longer than any night since I started. Otherwise no problems.

Alifit
Alifit
in reply to Rachael47

Hi Rachael,

Thank you for the positive information - I don’t sleep well any way, so things wouldn’t be much different!

I hope all continues to be well, love Ali x

Hi Ali. Another factor (although not main driver for a decision) to consider may be this: If you wanted this drug later on and were no longer eligible, could you self-fund it? The answer for a parp inhibitor is likely No. Whereas e. g. an anti- hormone treatment like Letrozole is dirt cheap in comparison.

It might be worthwhile asking your consultant whether there is a time limitation or similar constraint on this 'offer'. If yes, you could maybe consider asking for a lower dose if needed, to curtail side effects. That way, you would not lose out on this chance but still had a good handle on the impact...

Best of luck in any case. xx. Maus

Lindaura
Lindaura
in reply to Maus123

Oh yes! I think the cost to the NHS for Niraparib is £25,000 a month! But after a year the drug company pays for it (probably betting on our longevity). The deal with Rucaparib is probably similar.

So, get it while you can.

Hugs,

Laura

Alifit
Alifit
in reply to Maus123

Hi Maus,

That is an interesting point - I did suggest that maybe I could have it after my third line chemo (if and when I get to it), but my consultant said that it may not be available then. It is a very expensive treatment which I certainly couldn’t afford to self fund.

Thank you, still lots of thinking to be done.

Love Ali x

Hi. I totally understand yr dilemma. Ive been on Olaparib as a trial for 5 years. Its like even though its working well Im never free of hospitals. Having said that Ive had all this extra time, time with loved ones. Id be inclined to take the Rucaparib because if not Id always wonder..... Hope you make the decision thats right for YOU. Kathy xx

Alifit
Alifit
in reply to Katmal-UK

Hi Kathy,

Thank you for sharing your thoughts. I think that my rebellious streak really wants to be free of hospitals and medical stuff, but realistically I know that’s not going to happen whatever I decide to do.

Congratulations, by the way on your recent milestone birthday. I have followed your story with interest since I joined the forum, you are so positive and offer so much hope for everyone. Thank you.

Much love, Ali x

I would definitely try the drug, ask for a low dose to start with. You can increase if side effects are doable.

I should add that I live a mile from my hospital so have no travel problems to add to any decision.

Good luck with whatever you decide.

Alifit
Alifit
in reply to Katiebairdie

Hi, I have wondered about starting at a lower dose if I decide to go ahead. I know that the NICE guidance for Niraparib says that a lower dose should be offered to patients of a lower body weight (<58kg) so it may apply to Rucaparib too. If so, I’ll have to steer clear of the cakes and crisps - my excuse is that I’ve been catching up after chemo - as I’m not far away from that weight now!!

I live about 2 miles from the hospital, so that isn’t an issue for me.

Thank you for your help, love Ali xx

My advice, it's worked for me re the 2 tumours in my body BUT opened up blood brain barrier so now have mets on brain. Very rare & apparently more likely(?) if Brca1/2. Not to scare anyone but make people aware the other effects of some of the Parps. Make sure you can get MRI scans- mine grew in a matter of months. Bring it up with your Oncologist.

Michelle x

Lindaura
Lindaura
in reply to Bubbles-1

This is confusing as I have read in recent studies that the PARP inhibitors are now being found to be helpful in preventing brain mets in several cancers, including Ovarian and Breast cancer.

Best wishes,

Laura

Alifit
Alifit
in reply to Bubbles-1

Hi Michelle,

Oh that’s really awful. All of these drugs seem to present problems that even the drug companies can’t predict. I find the decision making really hard and I worry that I might make the wrong decision, even though I’ll probably never know.

I’ve never had an MRI for OC - always just CT.

Love and best wishes to you, Ali x

I can only speak of my experience. As my oncologist mentioned, the Brca1 gene probably doesn't help, and there is always a way cancer can sometimes find their way through. Secondary brain mets- a horrible addition to this disease.

Best wishes to you anyway.

Michelle

I finished chemo on March 16 and started Olaparib on April 24th. That was in line with their requirement of starting after platinum based chemo and it gave me over a month drug free. Is there a way to ask if that would be possible for you (to wait four or 5 weeks to start--if within the guidelines you have there? I am in New York). oxox

Alifit
Alifit
in reply to Maxjor

Hi, thanks for your reply. Apparently not - they tell me it has to be started within 8 weeks after the last chemo - it’s nearly 7 now. I’m going to contact the drug company to see if there is any leeway.

I loved New York when I visited, apart from it being -16 with a vicious wind! I’d love to go back.

Best wishes, Ali xx

I can really understand why you would want some normality , recovery & hospital- free time after the rigours of Carbo-Caelyx .

However, you may not be eligible for Rucaparib at another stage & I wonder if you would regret this opportunity.. . A new hope .

. I was very apprehensive about starting Niraparib so soon after chemo ; when I felt like a reprieve from Hospital. But the side effects are much less than chemo & I hope that is so with Rucaparib. Everyone seems to react differently to the Parps & you will only know by trying it . But go with your gut feeling about your quality of life . That is the most important thing.

Love ,

Mary xx

Hi Ali

Can totally emphasise with your wish to be “normal” for a while after chemo.

I am in the middle of chemo just now but was given a two week respite over Christmas.

I loved every minute and even postponed a scan which was scheduled during my two weeks off as I could not face having to go to a hospital! Part of me wanted to run away and never have anything medical done ever again.

But lovely as that thought was my sensible head knew I would be have to be back to the grind stone soon enough. And it has been okay.

I am sure you will make the right decision.

Lots of love

Juliax

Hi Julia, I hope this lot of chemo is going well. Which delightful concoction are they giving you?

Heart or head is the crux of this dilemma. I’ve still not really made up my mind - a bit more research to do, but the mostly positive comments I’ve had about PARP inhibitors are starting to sway me in that direction.

I had nothing better to do this weekend anyway!

Love to you, Ali x

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