Moving from Chemo to Niraparib

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I have stage 3B high grade serous carcinoma, BRCA and HRD Negative,  My cancer was found accidentally during a hysterectomy for other reasons, it is microscopic and was located in 9 different locations throughout my pelvic cavity. (completion surgery located 5 more than the original 4)

Having now completed 6 rounds of carboplatin and paclitaxel I am being placed on Niraparib, the side effects of the Chemo have floored me and I have been left with really bad neuropathy and what looks to be the start of lymphedema from the removal of my para aortic and other abdominal lymph nodes. 

I am really nervous about taking it and suffering with more horrific side effects, does anyone have any tips, advice or support just to get me through the hardest days? 

My first dose is tonight. 

Thanks 

  • Hi Rolled in glitter

    I have stage 3c ovarian and grade 3 peritoneal and bowel obstruction.

    Like you I had carbo and taxol followed by the full surgery and 3 more cycles of chemo. I am diagnosed with HRD and started Niraparib 300mg after the last chemo. I too have side effects including neuropathy in my fingers and toes. In fact I could tick all the side effects on the sheet they give you for monitoring. 

    The dose was reduced to 200mg and I'm managing at that level. I only have some tingling now and it's gotten better over time.

    I have just finished my 4th year of treatment with Niraparib and at a consultation yesterday I've got the go ahead to continue into my 5th year. I believe Niraparib is saving my life. In fact as the years go by I feel even better. I know just how lucky I am to reach the end of the 4th year as so many fabulous brave ladies don't. 

    Initially I was very breathless and developed red sores on my feet. Some oedema especially in my left leg.  I ached all over. Was often very fatigued and had and still have episodes of insomnia, taste changes and food wasn't enjoyable.  I had all the usual issues associated with this treatment. They all improved on the lower dose and Indeed did get  easier. After all of this time I do still  have episodes of neuralgia, dry skin on my feet  and sometimes a rash, I get ulcers in my mouth, dry lips and dry nose. Still get breathless but not as much as when I started. There are remedies to help with all of these. 

    I really hope you give it a go and it works for you like it is for me. See how you are doing and manage those effects and if necessary discuss the dose with your oncologist. 

    Good luck. I'm happy to keep in touch should you ever want to talk.