Progression and Niraparib

[Skyeplus]

Morning everyone

I was on Niraparib since last June 22 but this June it was stopped as my CT scan showed progression to my liver and possibly spleen. Also in peritoneum. My oncologist felt the Niraparib wasn’t working. Am now back on Paclitaxel and carboplatin and just had my first round. Due to have two more, then a scan, then possibly three more.

Can I ask. Has anyone had the Niraparib stopped, had more chemo then gone back on Niraparib (assuming the chemo works.)

or been put on a different maintenance drug?

Many thanks

Skye

[Caleda4]

Hi, Sorry you are in this position. I don't think you will be able to go on a parp again. I was on rucaparib, for 18mths taken off in 2020 had carbo/gemsar, finished Seot 2020. Recurred again 2022, had carbo/caelyx, which completed in Aug. last year. I have had a PET scan early June this year and I have progression but still on watch and wait. Thankfully I feel fine at the moment,but have been told that I will probably go on possibly weekly taxol, although this is not definite. I have had the option to have avastin,but I would have to pay for it and it is really expensive. I hope the carbo/taxol works for you. Take care.x

[Skyeplus in reply to Caleda4]

thankyou, I suspect that will be the case but wanted to ask. I hope that everything works for you. It’s such a challenging journey xxxxx

[Caleda4 in reply to Skyeplus]

It certainly is a challenging journey. I wish they could find something else that may work,as I am sure a lot of other ladies do on here.x

[RoseMS in reply to Caleda4]

dear Caleda4. Please may I ask, are you in the UK and if so, why would you have to pay for Avastin? Have you had it before? Thankyou. RoseM

[BadgerBright]

Morning Skye I am also sorry you are going through these challenging times. I was on rucaparib for 18mths when a ct scan showed my progression. My oncologist said it was not possible to go back on a parp inhibitor, after further chemo. I am back on chemo in Aug. Same as you 3 and then a scan. 3 more if successful. I am hopeful that this will keep it all at bay again as my oncologist said there is every chance it will work for a period of time. Not sure after this my oncologist mentioned the possibility of another drug and may be clinical trials. I have reconciled myself to the disappointment of coming off the rucaparib and try to keep as positive as possible. I know support of all kinds helps me with this. You are not alone with these challenges. Good wishes with it all. BB.

[Skyeplus in reply to BadgerBright]

Morning BadgerBright, thankyou so much for your reply. Love and good wishes to you. I guessed that it wouldn’t be possible. Although I’ve always known from day one how bad it is, going on the parp gave me hope. It’s been a real blow however like you, I do try to stay positive. I’m seeing my GP this week so am going to ask about clinical trials. Sending love ❤️

[BadgerBright]

Love and good wishes to you. Please let me know how you get on. BB.

[Alice77]

Hi. Exactly the same has happened to me...Niraparib April 2022 to end of May this year. CA125 had risen to 365 and CT scan showed recurrence on the kidney and its blood supply. I am awaiting the results of the PET scan he ordered to see whether the surgeon thinks it is operable but am expecting to be back on Carboplatin and Paclitaxel plus Avastin otherwise. There is no option for a return to a PARP inhibitor as far as I am aware, and the Avastin is subject to funding being agreed. I was feeling disappointed that remission since major surgery was so brief but the surgeon I saw was quite positive about a few more years yet and new treatments emerging all the time. Try to keep cheerful and I wish you all the best for the future.

[Skyeplus in reply to Alice77]

Hi Alice77 gosh we are so similar in regard to the timing. Interestingly my CA125 didn’t really change. My progression was picked up because my GP was checking something else. I shall ask about Avastin as that has never been mentioned to me. My oncologist did say that they might look at surgery. I guess it’s where and how far. Thankyou for replying, sending love and staying positive. 🥰

[Euphori]

Hi I came off Niraparib as my CA 125 was going back up and my BP was going Sky High. I did have a a very small TIA so stopped and had another 6 cycles of chemotherapy Paclitaxel and Carboplaten. That was my 3rd year of the same six 6 cycles of chemotherapy which brings my CA blood count down but then it creeps up again. I finished with chemo two weeks ago so now it's fingers crossed for a long remission

[Skyeplus in reply to Euphori]

I am keeping fingers, toes, arms, legs, everything crossed for you and for everyone. Sending love 🥰

[NewtonEmma1900]

I concur with Caleda, I don’t think that you can go back onto a PARP. I have been on Niraparib For 6 months, I have no idea how long it will work for as the CA125 has started to rise albeit slowly. I do hope that whatever is given to you is successful. 🙏

[Tealgirl7]

Your pathway sounds very much like my own. I have been on Niraparib for over a year now. My CA 125 is rising and there is a small increase in a lymph node on the last scan. I think they may decide the drug is not working after my scan next week. How many doses of carbo tax all have you had all together. Were you offered any other kind of treatment. I have been dealing with stage four for 17 years and know I am have you ever been offered avastinWishing you the best and love to hear from you

[Skyeplus in reply to Tealgirl7]

Hello Tealgirl17, thankyou for replying. I’ve not been offered Avastin and I don’t know why. I had 6 rounds of carbo and pac pre debulking surgery, then two more. I then went on to Niraparib. I’ve just had one round of the carbo/pac and the next is on the fourth. The first time I was told I’d responded really well to it. But unfortunately the disease is now showing progression. I’ve not been offered anything else so am going to ask….I think the feeling was I’d responded well so Niraparib was the way to go. Interestingly my CA125 didn’t budge from 6. It was the CT scan that picked it up. Sending love 🥰🥰

[Tealgirl7 in reply to Skyeplus]

Is this your second round of carbotaxle

[Skyeplus in reply to Tealgirl7]

Hi

Yes, my first was in September 2021. I had 6 cycles then debulking surgery, then 2 more. In June 2022 I went onto Niraparib until this June when my CT scan showed progression. So I’m back on c&p. Xxxx

[Tealgirl7]

I am enrolled in a new trial. The Niraparib it's not working as well. The new study involves having avastin and continuing on the Niraparib. Thinking of you and wondering how you're doing

[Skyeplus in reply to Tealgirl7]

Hi, I saw my oncologist on Thursday. The chemo seems to have shrunk the cancer on my liver and peritoneum so that’s a bit of good news. I asked what would happen going forward. I have two more session of chemo to have. He wouldn’t commit, said he wanted to scan me after the chemo. I also had to have a four hour magnesium infusion this time as it’s so low, he was concerned about that. We battle on !! Hope you’re ok sending love ❤️

[Tealgirl7 in reply to Skyeplus]

I have the first treatment and I feel pretty good. I was so stressed out due to a couple of things going on that my neck is so sore I can hardly move. I have been taking a magnesium supplement also. Wishing you the best.