Niraparib

[Angie1412]

Hi I haven't posted for a while but keep up with your posts. I have been on Niraparib since October. Started on 300mg but as platelets took a dive after 2 weeks they put me on 200mg. I have since developed an annoying cough and continuous sore throat. I also have a pain in my right side which is constant. I dont know whether these are side effects or something else. Has anyone else had these issues? I am waiting for results of CT scan for abdomen and chest. My last CA125 had gone up from 28 to 302. Sorry for lengthy post. I am getting really stressed out. Angie

[Lindaura]

Dear Angie,

Your rising CA-125 is a disappointing result for everyone, but must be especially alarming for you.

We are all hoping that the PARP inhibitors will be our silver bullet, especially for those of us with the appropriate genetic mutations.

What was yours, by the way. Do you remember?

Hopefully, your CT scan will show improvement and maybe ask for another CA-125 test.

It is best to have all the knowledge you can get when you talk to your consultants again.

Once you get all the info, you can decide how to proceed.

Feel free to ask for our opinions, too.

Best wishes,

Laura

[Angie1412 in reply to Lindaura]

Hi Laura, thank you for your reply. After my last chemo finished in July my CA125 was 13 and because the percentage drop was in the guidelines they offered me this inhibitor. I am BRACA negative but have the BRIP1 gene which is still being looked into. I am lucky that my three daughters have been tested and they do not have it. I was first diagnosed in 2016 with peritoneal cancer and have not had a break from chemo so I was hoping this inhibitor would keep it at bay! My next appointment if I don’t get called before is 5th February. Have you been offered an inhibitor?

Best wishes and have a good weekend

Angie

[Lindaura in reply to Angie1412]

Hi Angie,

After my successful treatment for my first recurrence, in Carbo/Caelyx, is finished in March, I will go onto Niraparib, although i am pleading for Olaparib, because it’s side effects are supposed to be less difficult.

They are both found to be if equal efficacy for BRCA positive ladies.

BRIP seems to be a newish mutation, so I don’t think they have enough data on it and the PARPS.

Coincidentally, there is another post from Rachael47 today, entitled BRIP, who has also been found to have this genetic mutation.

It might be beneficial for you two to be in touch.

Good luck with your consultation,

Hugs,

Laura

[Angie1412 in reply to Lindaura]

Hi Laura

I had the caelyx combination and found it bearable. I hope you get your wish. I will look at Rachaels post. I will keep in touch. Take care.

Angie

[Katiebairdie]

Hello Angie,

I posted 2 or 3 days ago about my experience with Niraparib. Had to mess about with dosage for a while but ended up taking 200mg. I didn’t have the same side effects as you. I have now stopped taking the drug as it wasn’t working for me.

Keep chasing for your scan results and ask for another CA125. My team are very good at keeping me updated on what is happening, hope yours are too.

Best wishes

Kathy x

[Angie1412 in reply to Katiebairdie]

Hello Kathy

Thank you for your post. I have an appointment on the 5th Feb. It is so difficult to know what is a side effect and what isn't. I have had the cough and constant sore throat and pain for ages. I went to my doctors who said the pain could be a pulled muscle even our local hospital said the same. I have mentioned it to my oncologist and cancer nurse on several occasions and finally after my CA125 when up considerably they decided to do two CT scans. I will have another blood test before my appointment. In what way did it not work for you? Take care. Have a good weekend

Angie x

[Katiebairdie in reply to Angie1412]

Hi again

My CA125 kept on rising . It was going by about 10 points each time I saw my oncologist, the last visit was Wednesday and it had risen by 20 points. We all agreed it wasn’t working for me so back to chemo in a couple of weeks.

I had to have two lots of blood transfusions because of breathlessness but apart from that I felt well.

I’m sure you’ll get the right advice on 5th February.

Kathy x

[Nicky100 in reply to Katiebairdie]

@Kathy, what was your ca125 reading on your last test?

I was so hoping you could stay on Niraparib. I hope you get the answers you need 🙏🏻X

Nicky

[Katiebairdie in reply to Nicky100]

Hi Nicky

My cA 125 was 103 when we decided it wasn’t working for me. It had risen 20 points in the last month plus having to have another 2 pints blood.

I’m now on holiday and starting carboplatin again when I get home. I would prefer to stay on holiday 😎🍷

Kathy x

[ShropshireJo]

Hi Angie

I was on 200mg Niraparib for almost four weeks but my platelets dropped significantly so have been in hospital since Tuesday. Despite transfusion, they have not recovered so am on watch and wait to see if a second transfusion is necessary. Apart from that, the only side effects I had was initial insomnia and constipation but it is still early days. I’m BRCA negative and don’t have your gene mutation. Do hope it all works out for you. There is a Facebook group for people on parp inhibitors but I'm not adept enough with FB to provide the link/invitation. Someone else may be able to help. All the best Jo 🌺🌼🌸🌻🌹

[Angie1412 in reply to ShropshireJo]

Hi Jo sorry to hear you are in hospital. My platelets dropped after 2 weeks on 300mg but recovered without any intervention so they reduced them to 200mg. I will find out on the 5th Feb the results of the scans but I have a feeling they won’t be great. I hope you get home soon. Keep in touch

Angie

🤞💐💐

[Nicky100 in reply to Angie1412]

Hi both, more and more research is coming out about the lower doses for women. I went through all the levels and all sorts of side effects, but am comfortably adapted to 100mg now. The dose of 300mg for most women is too high. They recognise that now.

Nicky x

[ShropshireJo]

Hi Angie. I’m impressed that your platelets recovered without intervention. I’ve just had another platelet transfusion as the count had dropped again to 13. It’s taking my bone marrow a while to reawaken.

Do hope your scan results are better than you think.

[Nicky100]

H Angie,

I’m sorry to hear you are feeling worried, it’s quite normal. What was your ca125 test result on your last test?

I have been on Niraparib a while now. But I did not experience those chest pains. But we are all very different, so do not compare yourself to anyone. You are you!

I’m on the lowest dose 100mg of Niraparib as the higher doses were too high for me. They don’t calculate the dose sensibly using body weight! So the generic dose will not suit most women!

It’s been very effective for for me. But saying that, I do many other supporting treatments/activities and supplements so who knows what is working.

The parp Facebook Group mentioned above is m.facebook.com/groups/17350...

Just remember that some of these ladies are in the USA and it can be different out there! It’s still a very useful page with loads of support.

If you need any more advice about Niraparib you can always pm me. I hope the pain gets better and you get some answers. Much love, Nicky x

[Hidden]

Hi Angie 1412

I started Niraparib 200 August 2018. In hospital for a week with low sodium and constant vomiting. Kept off tablets for a month then started reduced dose. I have similar problems to you lately. Dry cough, throat feels dry and scratchy, and pain in left side. CA 125 creeping up gone from 12 to 31 since starting med.

scan last week showed no advance of disease and no bowel involvement.Told Scan trumps CA125 so fingers crossed.

Hope this helps a little. So many uncertainties with this horrible illness.

Janwen2

[Angie1412 in reply to Hidden]

Hi

Following your recent post could I please ask whether you are still suffering with your cough and dry throat. I still have mine but nothing seems to work. I have spent a fortune on medicines. My doctor said my throat wasn’t inflamed!! Not sure where to go from here.

CA125 now over 600, have reoccurrence but they have told me to stay on Niraparib!

Hope you are doing well

Angie

[Hidden in reply to Angie1412]

Hi Angie1412

I discovered something called Gin Gins at the health food shop. They Seem to ease my cough and throat a lot. They are a chewy ginger candy (lots of sugar though), so not ideal but worked for me. Also nausea seems easier to deal with. Coincidence?

Fizzy water also helped.

Hope everything goes well and this is of some help to you.

Janet

[Angie1412 in reply to Hidden]

Hi Janet

Thank you. I will take a walk into town. Have a good weekend

Angie

[Angie1412]

Hi thank you for your post. Have they recommended anything for cough and dry throat? I have got an appointment tomorrow morning for the results of my scans. My CA125 went from 28 to 302 in six weeks. Fingers crossed my news will be as good as yours. Take care.

Angie