My Ovacome
10,319 members12,655 posts

Niraparib

Hi lovely ladies.

I’ve not been here much. I’ve been very busy working and going out and about. I’ve not been feeling too great but keep pushing myself.

I called my CNS. Tuesday as I’ve had pain in abdomen and back since the sigmoidoscopy. My consultant called me in today. He felt fluid in my tummy. Had blood test and scan has been booked. Maybe PET scan too. He wants to do a thorough investigation. It might not be a recurrence but I’m thinking it is. Only finished chemo end of Feb.

Anyway he did say that I can have niraparib. He spoke before of olaparib but for some reason I can’t have that. He said the two are similar.

Hopefully 🤞 it’s not the bloody gremlin and something less similar.

I hope all you ladies are all doing ok. You’re always a fantastic support to me xxxx .

33 Replies
oldestnewest

Good to hear from you, Suzanne.

I wonder if the Sigmoidoscopy has aggravated something that now doesn't want to settle... like the diverticulitis.. or caused some sort of infection? Hopefully they can get rid of the fluid and pain and it's not a recurrence.

Definitely suspicious timing... right after the investigative thingiescopy.

I know what you mean, re: leading a normal (work)life but struggling to keep up. It's been like that since my return to work after the initial diagnosis/treatment. I just felt it took 100% of my energy just to keep up with normal commuting and work demands. As soon as I was home in the evening, I sorta fell over, exhausted. No ressources to care for anything else.

In a way I'm glad that the recurrence and treatment (even chemo) provides me with a work breather, and I'm using the time to recharge as much as possible.

Good luck to you with the scan and the parp inhibitor! Fingers crossed. Maus

1 like
Reply

Thank you Maus. Yes I’m hoping it’s not a recurrence. I’ve got toothache too which is getting me down. It was caused by th dentist on Tuesday. Broke a tooth and he filled it. I’m sure he’s damaged a nerve or something.

You did need a work breather. I found chemo was sort of enjoyable. Reading a book and eating sandwiches. I felt like I was being mended too. Don’t really know any to be back on it just yet.

I hope you are doing ok. Look after yourself.

Big hugs xxxx

1 like
Reply

I have everything crossed for you that it is nothing sinister. Great that you are started a parp inhibitor. REMIND me Suzanne are you BRCA pos. Love Chris

1 like
Reply

Hi Chris. Yes I’m BRCA2 positive.

Hopefully I won’t need the niraparib yet. Hoping the scan shows it’s something unrelated to cancer. I hope you are doing ok. Xxxx hugs

Reply

good luck with it all Suzanne....Chris xx

1 like
Reply

Thank you Chris xxx

Reply

I hope you can get to the bottom of your pains, Suzanne. Good luck with the Niraparib. I wonder why the change of heart from Olaparib 🤔 Maybe it’s because Olaparib is for after third line treatment, but he can get you on Niraparib sooner?

Vicki x

1 like
Reply

Hi Vicki.

Thank you. I think olaparib is for platinum sensitive women. I had a reaction so maybe with niraparib I fit the guidelines. I’m hoping though that the bloods and scan are ok and my cancer has not come back yet again. I had eight months remission first line and if it’s back then it would be just over two months.

I hope you are doing ok. Big hugs xxxx

Reply

Fingers crossed everything is ok and it’s not the beast stirring x

Sending you hugs and hope you can get some relief from the aches and pains xx

Bev

1 like
Reply

Thank you Bev. Yes I’m hoping it’s something else. Anyway hung else but this bloody disease. Hugs xxxx

Reply

Hi Suzanne, it is nice to hear from you, it's good you have been keeping yourself busy.

I'm sorry you may have to go back on chemo hears hoping not

Good your oncologist has a plain hope it gives the results you deserve.Take care Lorraine xx

1 like
Reply

Thank you lorraine. He’s a good oncologist. He says he’s going to get to the bottom of it. I’m hoping it’s not a recurrence.

I hope you are doing ok xxx

Reply

Wow you have been given go ahead for Niraparib! Although awful of it is back it is fantastic to be getting such a new supposedly fantastic treatment.. I have been aiming for this for months but sadly my last lots of chemo ( Carbo/ Caelyx) didn’t work and that means I don’t qualify for either olaparib or N : and the drug company is limiting it too according to my oncologist due to funds and not being signed off by NICE (?) it seems to have had some great results in the US so very good luck to you and so hope it’s succesful! X

1 like
Reply

Aww thank you. I’ll have it if it is a recurrence. They’re doing tests as it could be something else.

I hope you are doing ok. Hugs. Xxx

Reply

Be thinking of you and wishing you the best. xxx

1 like
Reply

Thank you Zena. How are you doing? Xxxx

Reply

I'm fine thanks. Feeling a bit as if I'm sitting on a time bomb recently but I don't really know why. I go for my BRCA meeting next week.

I found out today my daughter is having another boy so that's good news. xxxx

1 like
Reply

I think we often feel like that. I do. Sometimes I’m ok and other times I get very anxious. It’s so normal to feel like that. ❤️

Lovely news about your Daughter. A lovely baby grandson to look forward to xxxxx

Reply

Thanks Suzanne, A little brother for Max. I'll tell her when he's born about the BRCA gene. Got a while yet. He's not due until September. xxx

Reply

Oh Suzanne--the waiting for the scan alone is challenging! I am on a PARP inhibitor (Olaparib) and not sure why you can't have that one but heard good results from the one suggested for you too. The printed list of side effects is the same as what you read before chemo--they list everything possible so don't let that scare you. Its a good choice I think (IF you need anything) and of course hoping not but at least you have a good plan if so. PLEASE keep us posted. Let's hope beyond hope its nothing!!!! Being busy is especially good for you right now.

oxoxoxo Judy

1 like
Reply

Hi Judy.

Thank you. I’m too hoping it’s not a recurrence but if it is then I’ll face it again.

How are you getting on with olaparib? My consultant says that’s really good. I can’t have that because I can’t have carbo .

Hoping you are doing really well.

Hugs xxx

Reply

I just met with my onc this morning and had bloodwork done. Doing very well on it--my bloodwork (so far) is very good and my side effects are manageable (fatigue and some joint pain). I am told within 8 weeks much of this could go away. I feel great (the fatigue can be a drag but I am still swimming and walking tons). My ca125 was 8 when I started (as maintenance--you will be on the PARP for treatment I would assume if you need it) and I am now waiting for what it is now (that report always posts to my portal later than the others). Hoping beyond hope yours in not a recurrence--I don't believe it is!!! I didn't realize you had to be OK with Carbo to have Olaparib. I think all the PARPs are beneficial!

oxoxoxo

Judy

1 like
Reply

Hi Judy.

It’s so good to hear you’re doing so well on it and I hope you continue to for many years. Yes PARPs seem to be the way forward. Xxxxx

Reply

And JUST got ca125. Went from 8 to 7. Quite relieved!!! And a good sign it's working on the residual "stuff". I am saying this to hopefully make you feel better if and when you need to go on one. oxoxo

1 like
Reply

That’s brilliant news. 👍🏻👍🏻👍🏻

Thank you for letting me know. It obviously does a great job. Really pleased for you. 👍🏻👍🏻❤️❤️Xxxxx

Reply

Oh Suzanne sorry to read you are in limbo waiting for scan and worrying. Hope that it is indeed something to do with sigmoidoscopy and not the beast back. Keeping busy is good, remember to rest too though! Fingers and everything crossed for you.

Love,

Madeline xxx

1 like
Reply

Hi Madeline.

Thank you. I’m hoping so much that it’s not a recurrence. If it is, I’ll deal with it again.

I hope everything is going ok for you.

Hugs. Xxx

Reply

Hi, like a lot of others I hope your problems are due to sigmoidoscopy. It will interesting to hear, if you start niraparib, how you get on with it. I’m hoping to start it soon. Hope we hear you feeling better soon with no further treatment needed.

K x

1 like
Reply

Hi Katie.

Thank you. I’m hoping it’s some sort of bowel problem. Rather that than the bugger rearing it’s ugly head again. If it is a recurrence my consultant wants me on chemo straight away. Taxol again. Hair loss again. Was just getting used to my skinhead.

Let me know when you start it. Xxxx hugs.

Reply

Good luck Suzanne that it’s not a recurrence. Hope the tooth settles down too.

1 like
Reply

Thank you. Tooth is a bit better today.

I hope all is ok with you. Xxx

Reply

Just wanting to send you lots of luck and hoping you don’t get a recurrence and your symptoms and related to something other than OC, maybe the sigmoidoscopy has irritated your bowel? It’s hard not to worry about every ache and pain I know....I’m on chemo and have developed lower backache and I’m thinking it could be something worrying...trying to stay positive but easier said than done sometimes!

Sending hugs for good news and have a restful weekend,

Liz Xx

1 like
Reply

Hi Liz.

Thank you. Yes I’m hoping it’s something other than the gremlin. I’ve got an endoscopy booked. That might show something. My consultant said he felt fluid in my tummy. Hopefully he’s wrong and it’s just fat.

I hope you are doing ok. Have a lovely weekend. Hugs. Xxxx

Reply

You may also like...