Parks.

[fendweller]

Hi ladies , I've had my fourth cycle ,very bad side effects ,on day 12 and still feeling very weak .Oncologist has said I'd most likely go onto a parp after my sixth cycle ,he didn't say what ,he tends to drip feed me ,so I've been googling ,I know ,don't tell me off , sounds like olaparib could be the one , I'm a bit alarmed by the side effects , paclitaxol and carbolatin affect me badly ,but I cope knowing there's an end ,so not sure I will cope with a constant parp , any input would be welcome ,I always seem to get these black thoughts and worries at the weekend when I can't ring my CNS .

Cheryl.x

[Frenchhouse3]

Hi Cheryl, Sorry you’re feeling so rough after your fourth chemo, it’s really tough isn’t it?

Nearly there now and you’re doing so well with it, despite feeling awful.

I’ve been on Olaparib for just over a year now and although I felt a bit nauseous and a bit tired to begin with, I pretty much don’t notice it now and it has worked well for me so far! I would highly recommend it.

Also, you have blood checks every four weeks which is reassuring!

I’m now on eight weekly testing after a year.

I think it’s very normal for us ladies to feel anxious over the weekends when we can’t call on our lovely nurses for advice and support.

I often rang the emergency helpline at the hospital if I was worried and they always talked me through my anxiety and gave good advice too, so never feel afraid to contact them.

You’ve got this Cheryl and if you do go on Olaparib, lots of us on here can offer our experiences with it if you have questions.

Lots of love

Denise xxxxx

[fendweller in reply to Frenchhouse3]

Thank you so much Denise ,that's helped a lot , my mind was going on overdrive ,feel much calmer now .xxCheryl

[Frenchhouse3 in reply to fendweller]

Trust me Cheryl, you are so normal to feel this.Olaparib is nothing like Chemo, much more gentle and very do- able.

I sometimes get a bit low on my iron with it, so I take liquid iron sachets which sort it out within days with no side effects like iron tablets. ( Called Spartone ). They’re completely natural too. You might not need them at all though, your Oncologist would advise if necessary.

Another lady on this site ( Katmal ) has been on them 7 years or more and works full time on them. too!

Take care, lovely lady. Xxxxx

[fendweller in reply to Frenchhouse3]

I feel like booking a holiday now , thank you .xxCheryl.

[Frenchhouse3 in reply to fendweller]

I would do it Cheryl, it’ll give you a positive focus. I have done the same! Xxxxx

[delia2]

Hi Cheryl. I felt awful like that on carbo taxol and Olaparib is nowhere near that bad. I’ve been on it for nine months and it did take me quite a while before the side effects decreased but now it’s not bad. The nausea was very mild most of the time and mostly disappeared after 6-8 weeks. One odensatron a day took care of it. Mostly fatigue and joint pain were the problem. I took a nap every day for months but no longer do. On the bright side I had residual cancer after chemo and Olaparib got rid of it. I’m in the US and have a somatic brca1 mutation. It seems like BRCA negative people are being put on Niraparib or rubraca. Don’t be put off by the side effects. I think PARPs are the best thing since sliced toast!Meanwhile maybe you’re anemic or dehydrated? I hope you feel better soon. Xx

[fendweller in reply to delia2]

Thank you Delia 2 , your reply has made me feel calmer about it ,happy you are doing so well ,long may it continue.. Xx

[Pianoplayer731021 in reply to fendweller]

Hi Cheryl, I’ve been on niraparib and I am BRCA negative. My dose was lowered to 100 mgs. from 200. I’ve been feeling ok, but now I have a UTI. These drugs can affect our blood and give us different problems. I just wait and see what the next scan or blood test will show. I know what you mean about the weekend with the nurses not in the office. I know that we have to stay hydrated like Delia said. I’ve been treated twice for dehydration. Hope you feel ok this weekend and you can always message us gals. Take care, Donna

[fendweller in reply to Pianoplayer731021]

Thank you Donna , nothing is without some problems , but I'll cope , think I'm feeling a bit better today .xxCheryl

[Pianoplayer731021 in reply to fendweller]

Hi Cheryl, glad to see that you are feeling a bit better today. Hang in there girl, I know it isn’t easy. Take care, Donna

[fair-rosamund]

Hi, it will be olaparib if you're brca+ve or niraparib or rucaparib if -ve. In 3rd month of niraparib. Nauseous and anxious through month1 but settled and now feel normal. These all still classed as new drugs so we are all on the learning curve. I was told to keep hydrated, and I am much thirstier than usual.

[fendweller in reply to fair-rosamund]

Pleased you're a bit better now ,as you say its a learning curve ,at least I've an idea if what to expect ,thank you.xx Cheryl

[Shrek1609]

Hi hun I’ve been on Olaparib for almost 2 years after frontline chemo. Due my mri and pet-ct next month to see whether to reapply for funding if there is any residual disease.

Im stage 3c, brca1 and Olaparib helped a small amount of disease in my lymph nodes to calcify.

Side effects are worse in the first few months. Learn to eat WITH/Before taking meds. Make sure you always have an anti sickness drug with you. Fatigue can hit hard; and if I’m honest even almost two years on I never plan to have more than a couple of busy days together. Listen to your body. Rest when it tells you you need to. Always report any side effects to your oncology team as they can be managed and we are all different.

Is Olaparib a breeze? nope! is it anything like IV chemo? nope!

Nausea sometimes still affects me for no reason, but I’ve learnt to take each day as they come and be happy that most days are good and outweigh the few nauseous tired days.

For the first year bloods are done every month, and ct scan every 12 weeks.

Year 2 I have my bloods done every 8 weeks, and ct every 12 weeks.

One occasion I felt bloaty and nauseous for more than a couple of days my oncology team had me straight in for a ct and bloods, with results the same day.... all good.

My ca125 has been almost static on Olaparib at between 5 and 6.

Don’t let your oncologist drip feed information..... ask/demand answers to anything you want to know. Your treatment is YOUR choices, make sure they make you part of the decision making process.

Good luck and please don’t worry; your oncology team will only want the best for you x

[fendweller in reply to Shrek1609]

Thank you for your reply ,some good advice there .x

[ShropshireJo]

Hi Cheryl. So sorry that you’re feeling so rough with your chemo. It’s tough dealing with the side effects and it seems such a long haul but you’re getting there now and the end is in sight. I can’t help with advice on olarabib but it seems like a good option for many of the lovely ladies here. Just want to wish you all the best, particularly over the next few weeks until your chemo is finished. Love Jo 🌺🌼🌸🌻🌹

[fendweller in reply to ShropshireJo]

Thank you Jo , I think I feel a bit better today .xxCheryl

[ShropshireJo in reply to fendweller]

Good to hear that. xx

[Katmal-UK]

Hi Cheryl. Ive been on Olaparib just over 7 years now, its nothing like chemo. Side effects for me are minimal. Id highly recommend giving it a go! Xx Kathy xx

[fendweller in reply to Katmal-UK]

Thanks Kathy ,I'll certainly give anything a go .xx Cheryl

[Shrek1609 in reply to Katmal-UK]

Just a side note fendweller after first line chemo Olaparib is only funded for TWO years. After that they will only allow you to refund it if there is evidence of stable residual disease (hence my having a mri and pet-ct next month before my 2 years finish at end of Feb). If no disease present then you come off Olaparib (scary).