Diagnosed with stage 4 ovarian on maintenance therapy

[mswhoffman]

Anyone have a similar profile like me?

[Apwulady]

I am also a Stage 4 Ovarian Cancer survivor. I'm 50 years old and on the maintenance medicine Rucaparib. I used to be on Lynparza but that stopped working for me after about a year and a half. I also have a colostomy bag due to the tumor location. So know that you are not alone in this battle. This is an amazing site for support. All the best

[mswhoffman in reply to Apwulady]

Thanks for sharing. I have been on Lynparza since June. How long have you been on Rucaparib? Is this an alternative similar to lynparza? How is it working for you?

[Apwulady in reply to mswhoffman]

I have been on Rucaparib since July. It's another parp inhibitor just like Lynparza. So far its keeping everything stable. I g

Wednesday th

[Apwulady in reply to Apwulady]

Sorry about that partial response. I go to the doctor on Wednesday to do blood work and to get an Avastin infusion. So will see how the meds are working. The side effects for me are head and body aches and occasional diarrhea and fatigue. How is the Lynparza working for you?

[Pianoplayer731021]

Hi, I am also stage 4 ovarian. I am on niraparib since July of 2020 and am tolerating it fairly well. I will be 75 in November, one of the older gals ; I believe. I live in the U. S.

[mswhoffman in reply to Pianoplayer731021]

Why are u on niraparib instead of Lynparza?

[Pianoplayer731021]

Hi, I believe my dr. told me that this is the preferred choice after 7 rounds of chemo and major surgery in between these rounds. They told me that this parp works well with BRCA positive. Unfortunately I am BRCA negative, but this is still the one that they suggested for me. I just have blood work and a CT scan every so often to check on how well I am progressing. So far, I’m still going without too many issues with side effects. I took a break from it a few times, like a week off and then start again. I had one blood transfusion last September, because of ,y low hemoglobin. I am thankful that my numbers are doing good lately. I hope that your treatment will work well for you and am sorry that you needed a colostomy bag. Keep the faith, it’s the only thing that keeps me going. I wish you well, Donna. xx hugs

[Seedlings in reply to Pianoplayer731021]

Hi there. I'm also on Niraparib since June this year. In the last month my blood s dropped so I've had two transfusions. What dosage are you on ??. I'm on 200mg. I hope that this settles down like you did.So good to hear you are well.

[Pianoplayer731021 in reply to Seedlings]

Hi, I started on 200 mgs., but this dose was affecting my blood work and my liver and kidneys were taking a hit. They reduced my dose to 100 mgs.after a few months. I still have issues once in awhile with side effects. I have neuropathy in my feet and my legs feel tingly. If it gets too bad, they will probably stop this drug. I have been on it since July of last year. I hope that you will feel better when they can get your dose right. Thanks for your message. This disease can make us so depressed sometimes, that it helps to talk to others to build each other up. Take care and I hope you will feel better. By the way, chemotherapy infusions started my neuropathy. It just doesn’t go away with niraparib and I will probably have this permanently. Nerves take a very long time to heal. I will be 75 in November, it’s a battle for sure to try and beat this. Donna. U.S.A. 🦋

[Seedlings in reply to Pianoplayer731021]

Thank you so much for getting back to me. I really appreciate it. You are so right , it's a rocky road and reassurance and support are so important. I'm sorry that you have neuropathy ..it's debilitating. I have some but mild enough. Hopefully I will get to speak to my consultant this week. I just want to get on top of this issue so that I can have a better quality of life. You will be in my prayers.

God Bless

Ann. Galway

[Pianoplayer731021 in reply to Seedlings]

Thankyou Ann for your prayers. Be praying for you too. God bless Donna

[Pianoplayer731021]

I mistakenly said a remark about your colostomy bag. I was reading the post from the post before your post. Just got mixed up on that one.

[mswhoffman]

Thanks for sharing. I am glad you are doing well!

[Grankidsxxx]

Hi I'm stage 3c ovarian cancer. Diagnosed in july2020. I'm on Niraparib started on 200mg but had issues. On 100mg since june,but CA125 are rising. Had a CT scan yesterday, just have to wait on results x

[Gramdma27 in reply to Grankidsxxx]

I was also diagnosed in July 2020. Stage 3.I am on 100 mg of Niraparib also.

I was not able to tolerate the usual 200 mg dose because of platelets tanking.

There were interruptions in taking the med. Hopefully there is no effect from the breaks.

Having CT scan today.

Scanxiety is terrible.

Hoping your scan yields good results.

[Grankidsxxx in reply to Gramdma27]

Wow! We are practically identical. My scan I had on September 13th was clear! Another one in December. Good luck with yours x

[Gramdma27 in reply to Grankidsxxx]

Awesome news for you.I told the imaging tech to make my scan look good.

😀I'll keep ya updated on mine.

🤞

[Grankidsxxx in reply to Gramdma27]

Please do fingers crossed for you 🤞🤞 x

[mswhoffman]

Hope the results went well!

[Gramdma27]

Scan results were not good. Peritoneal disease is enlarging, new nodule in lower part of lung, and tumor near sigmoid tumor. All these were not seen in the previous scan. Obviously niraparib was useless.

PET scan is to be scheduled. Oncologist is going to confer with the surgical/oncologist to see if more debulking can be done. He says it is rarely done.

Since I had a reaction to Taxol and completed 6 rounds of Doxil, my options are limited.

Plan at this time is to wait until PET scan is done then proceed with carboplatin and gemcitabine. Also Avastin.

After that immunotherapy.

I'm not very optimistic at this point.

Sorry to be such a Debby Downer.

[mswhoffman]

I am sorry to here this. I hope your team and family will provide the support you need to get through this trying time. Thinking of you.