I have just found out from my CT scan that I have got a recurrence after only 4-5 months of finishing my 1st line of treatment including debulking surgery and 6 rounds of chemotherapy carboplatin/packitaxel. I was recommended a CT scan after experiencing symptoms and my CA125 was gradually going up too. I’m not BRAC. The scan shows thickening of peritoneum and acities.
I’ve been on Niraparib since August but I don’t think it’s working. The oncologist wants to see me in 3 weeks and I have another scan arranged for 6 weeks time.
I’m platinum resistant apparently.
Can anyone suggest what might happen next? I feel up the creek with no paddle right now
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Narna1
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Sorry you are back fighting the beast again. I believe that weekly Taxel is used when you are platinum resistant (a friend has been on it) but don’t quote me!
It’s horrible not knowing what will happen next. Have you thought about getting a second opinion?
I hope it goes well for you and you end up with a plan you are happy with xx
My friend who is platinum resistant had Doxil only. Then she had weekly Taxol, which was successful and she is stable on a chemo break. There are a lot of new options for platinum resistant folks, so try not to despair as scary as it probably feels.
You're gyn-onc will obviously know the best plan for your particular case based on current research and availability of meds in your area.
hi hi , I was back on chemo 3 month after finishing 1st line. Weekly taxol and fortnightly bevacizumab since Dec 2021. Just stopped the taxol as need a break. It’s kept me stable. When I start 3rd line (which is inevitable) I can consider protocols with carboplatin because it’s over a year. And different combos (eg carbogem) work synergistically and could v well work for you. I found low dose taxol quite tolerable if that’s what they suggest. Good luck - as the others said , there are options. X
Hi. I'm in a similar position so I think I understand how you are feeling. I think I'm going to be offered Caelyx - 4 weekly x 6 doses. Let's keep going as strong as we can. Whilst you may not have been NED for long this time that doesn't mean it won't happen after a bit more treatment. Best wishes xx
Boy do I know your story ......mine was back after 6 months and I was on AVASTIN as maintenance. I too was/am on the same path. Maybe think of second opinion asap? Trials??? Please let us know how you are doing and try to stay positive and strong! The ladies here have met with many adversities fighting this disease. I started in Dec 2019 and am finishing up third line chemo and don't know if it is going to put me in remission or not. Pet scan in Dec.
Can you ask for PET scan as it is much more definitive for cancer? Please know I am thinking of you and keeping you in my thoughts and prayers.
hello i have a very similar profile to you. I recurred 5 months after frontline. I was never told that I was platinum resistant & I was put on carboplatin & caelyx. They didn’t get me to NED but did work for a few months & got rid of the ascites & effusion as well as give me good quality of life for six months. That may be your next line of treatment. It may also be more effective than first line. I found it much easier to tolerate. I’ve been on bevacizimab (Avastin) only since may & whilst my markers continue to be astronomical, it’s kept the ascites at bay & I feel ok! Try not to worry too much at this stage , you have a fair few options left! xx.
Hi. You’ve gotten good advice from others here. I would really encourage you to look at trials because many focus on platinum resistant cases. Also seek a second opinion from someone like Susannah Banerjee at the Royal Marsden. It would be well worth the trouble. Xx
Thank you so much to everyone who replied. So helpful. I recently read that only 10% of cases have the BRCA gene. So I’m thinking that there must be plenty of treatments out there for people like me as we are in the majority. I wonder why the maintenance drugs like Niraparib work on Non BRCA patients? They don’t work on me. The oncologist said they would increase my time NED by 10% (statistically)I wasn’t impressed by this! These drugs make me feel pants.
Has anyone heard of a radical diet that slows down growth of cancer cells? Or any other alternative treatments that have had a positive effect? Or exercise? I want to throw everything at the nasty me!
You may want to look into intermittent fasting (aka time restricted eating). It’s not calorie restriction, it’s simply limiting the time period when you eat during the day. I limit my eating to an eight hour period daily (11:00 am to 7:00 pm), which gives me a sixteen-hour fast each night. My oncologist is okay with this. There are studies that show it can extend remission in breast cancer cases by 33%, so I figure it might help in OC cases. I’m stage IV and can’t afford to wait for clinical study as to whether it helps OC.
Have you tried/considered going plant based ? There is a lot of evidence out there on the connection between meat and dairy and cancer.
I was diagnosed 3C HG in March 2016 with a recurrence in 2017. I have been on Niraparib for 4.5 years and remain NED.
I have also been following a vegetarian/plant based diet since my recurrence. No meat ever but have had fish , cheese etc from time to time. I am now almost completely plant based ( a little chocolate treat occasionally)
If you would like to explore the possibility of plant based eating there are Two books I thoroughly recommend .
1. Say no to cancer by Patrick Halford.
2. The China study by T. Colin Campbell.
The first book is very easy reading , the 2nd is a bit more scientific but you can dip in and out .
I live in London but visit Cambridge a lot if you ever fancy a coffee.
The China Study audio book is available from my public library though the free Libby app. I think Dr Campbell’s research is well founded. He has several videos on YouTube anywhere from ten to ninety minutes where he discusses his findings. Very easy to understand. Also, have a look at the many short videos by Michael Greger , MD. A favorite of mine is the respected cardiologist, Dr. Pradip Jammadas. He is humorous, informative and an excellent motivational speaker. Good luck to us all. 💪🏽
I'm surprised Dr didn't remove omentum during debulking surgery. Mine took half then after pathology report went back in took 15 lymph nodes and the remaining omentum. I then did interperitenil chemo, with regular IV chemo. 18 rounds in 14 weeks. I've been fortunate, no reoccurance. If your in the US, try city of hope., best wishes, Liz
If you do got to city of hope mission hills, Dr Amy Hakim, you can Google her she's the best. My friend was stage 4 given 6months, doc got her 2 yrs. I was given cysplatin, 2 times , then switch to carboplaten but I also had stomach wash or interperitenil chemo. I have never had any meds for cancer afterwards. I'm stage 3c2, clear cell carcinoma. 2 lb mass removed in 2014, April will be 9 yrs no reoccurance. The stomach wash is supposed to keep you from getting reoccurance. Liz
It is truly tough seeing that those of use who have straight cancer and no braca issues that there is not a lot out there I was on Olaparib didn't do its job either. very frustrating I think that ovarian cancer is so difficult to identify and kill, when one door opens 5 more doors present themselves more difficult than chess! We can only hope strive to survive and fight every minute! STAY STRONG TEAL SISTER
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Platinum resistant - paclitaxel planned
platinum resistant !
Ovarian Cancer Stage 4
Platinum resistant? 
Freaking out and need some hope. CA125 jumped from 27 to 800 just 4 months after frontline.
