Hi lovely ladies. I hope you are all doing well this morning and managing to keep out of this nasty rain.
I have a question. In August this year my Ca125 was 15. I started Niraparib in September when my ca125 was 35. Since then it has risen to 81 (October 24th.) I have bloating, fatigue, bowel problems,joint pain and awful brain fog.
I saw my consultant two weeks ago who examined me, saw I was in pain and suggested a scan. She hoped she would be able to give me the results at our next appointment this week. My scan isn't until Wednesday so I know from experience that it will take some time to get processed. I am going out of my mind with worry. I was unable to complete my last chemo in August because of low neutrophils and side effects. I feel so weakened by the Niraparib that I don't think I can face chemo again.
I had pinned my hopes on the Niraparib being effective and now it doesn't look like it has worked for me. My consultant wants to keep me on it and doesn't want to make any changes before the scan results. I am just feeling that it has been a waste of time and I am so panicked because I cannot see a way forward. I am frightened of the effects of more chemo but not having it feels like passive suicide.
Can anyone please offer me any words of wisdom. I have stage 3c primary peritoneal cancer diagnosed in September 2016 with a recurrence in January 2019.
Thank you very much in advance x
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Welshandproud
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Hello - I think if I were you I would ring the consultants secretary and explain the situation. There seems little point in seeing the consultant if she doesn't have any results for you, you certainly don't want a wasted journey, not in your condition. She might be able to get you an earlier scan and change your consultant appointment to a more appropriate time, so that when you do go to clinic you will at least get some answers, in the meantime keep resting and pamper yourself well. Good Luck and hope you get some answers soon.
Thanks Lyn. That's a good idea but I have to go to the hospital anyway to get my next supply of Niraparib. They won't let me have them until the doctor has checked my bloods and blood pressure. At least I will be able to talk to the team about my concerns. In the meantime I will rest and pamper xx
I’ll keep everything crossed for you! We are all sending you strength. 🤞💪
Yes, pamper, pamper, pamper! Be as good to yourself as you possibly can be. Plan as many distractions as possible. I’m a great believer in mindlessness! Keep strong! 🤗
Hi Lyn, sorry to say I’m in a similar position to you. I started Niraparib Sept this year and by mid Oct became aware I had assures symptoms which was confirmed by a scan. I stopped Niraparib once this was confirmed, I had ascites drained last week so am comfortable and active again for now. I start weekly taxol next week.
I hope for you that your scan clarifies what is happening and your medical team can put plans in place whatever the result. Seeing your consultant ahead of scan results can mean that a plan can be pencilled in so you have some reassurance about the likely next steps. I wouldn’t stop taking Niraparib without medical confirmation. Look after yourself xx
Thank you so much. I was starting to think that I was the only one who did not gain any benefit from Niraparib. I'm sorry that it wasn't effective for you either but appreciate knowing someone else in the same boat. I definitely won't stop the Niraparib until they tell me to. The scan will be the decider I think.
I'm glad that you are feeling more comfortable after the drain. Good luck with the weekly taxol.
I can't tell you how much better you have made me feel. Thank you xx
Hope your scan goes OK today. I too am finding this forum great in finding that others are having or have had experience of the same treatments, it is such a relief to remove that feeling of isolation x
Good morning. Ahh my heart goes out to you. I was in a similar situation earlier this year. I'd finished carbo Taxol (3rd line) in December and was on Niraparib; it was March and I was still bone weary. My ca125 was rising rapidly, so they ordered an urgent CT scan. I told my Nurse Consultant that I didn't want chemo because I didn't want to obliterate the rest of my days in a chemo haze. The results came back, I was at extreme risk of bowel obstruction, platinum resistant and my ca125 was over 6000. Low residue diet prescribed and chemo to recommence once the Niraparib was out of my system. I again refused chemo. My Nurse Consultant talked me round and boy, I'm glad she did. I felt so utterly exhausted but she persuaded me to go ahead with weekly Taxol (I eventually signed up for the CEBOC trial which included another drug halfway). At the beginning of treatment my ca125 had risen 10,800 and its recently been 41. It could be lower, I've stopped asking.
The last two months I've felt better than I have done for a very long time. I can't tell you how appreciative I am of the turnaround. The chemo got tough at the end but by that time I knew it was working so just hibernated for the last 4 weeks.
So, there is hope even if you feel so absolutely deflated at an early recurrence so soon after treatment (fingers crossed the CT shows it's not).
Big hugs, these are scary times but we've got your back. 💐💐😘😘
Thank you so much little San. You'll never know quite how much your post has lifted me up this morning. I too feel that I don't want to be in treatment all the time with such a low quality and life. You have inspired me to not give up hoping for a better future. Your response has been amazing. I do hope that I will be as lucky.
It also means so much that you have my back. Thank you xxxc
Hi Sian No words of wisdom but just want to send you a big hug. I was obviously hoping that the Niraparib would give you good results and not affect you like this. I have everything crossed that your scan isn't a recurrence . Hopefully Little San's post has given you some encouragement. Kathy xx
Thank you Kathy. That is so very kind of you. We never quite know how these drugs are going to affect us I suppose. I too had heard such good results with Niraparib but possibly not for me. Sending you a big virtual hug back too xxxx
I’m so sorry but glad you were cheered by Little SAN’s experience-as was I. Could they lower the dose of Niraparib? It seems that can really help with side effects. I really hope the scan is better than you fear. Xoxo
Hi I was similar to you 3c HGS diagnosed March 3016 worn out by chemo after chemo feared my luck was running out. I was put on weekly taxol December 18 3rd line and now doing fantastic. Platinum resistant so no PARP for me. Hang in there we all know what you going through. Sending you positive vibes
Thank you Janet. Niraparib certainly doesn't seem to be the miracle drug I had hoped for. I'm sorry that it didn't work out for you either. I'm pleased that your carboplatin chemo is having a much better effect. Wishing you all the very best for your scan tomorrow. Sian xx
Hi Lyn--my numbers started to rise by 2s on Olaparib and my oncologist said to stay on it because if it was a relapse, it was making it happen very slowly AND nothing would show up on the scan for awhile. That lasted a few months then the numbers started to double and at that point, we did the scan. It showed very low volume recurrence--which my oncologist said was because of the PARP. The good thing about low volume meant I had a bit of time to figure out what to do next. So if you can tolerate it, it may be the right thing to do till the scan unless you don't think what you are feeling now could be worse. My oncologist also said my fall back--if other things don't work --will be weekly taxol and avastin and he is confident it will get me back to remission. Right now I am heading for a trial of something very new and I am hoping because like you, not sure I am ready to face chemo again. Wishing you luck to either move up your scan or that time goes quickly for you till then. Hugs, Judy
Thanks Judy for your reply. I hadn't even thought about low level relapse. Perhaps the Niraparib might be helping a little bit and that my levels would be be even higher without it. I will await my scan results with interest.
Can I ask what your new trial is and where you are having it please? Are you based in the UK? Sorry for so many questions and good luck with your treatment. Sian xx
Hi Sian---I am in the U.S. (New York) at Memorial Sloan Kettering. The trial is a phase I and called SRF231 which is an immunotherapy agent given intravenously once a week (no pre-meds and one hour for the infusion). The trial team said it works very differently from the immunotherapy trial I had before (Obdivo) which did not work. Evidently cells all "express" CD47 and more is expressed on cancer cells. The CD47 is called the "don't eat me" protein because it makes the cancer invisible to our immune system. This drug is supposed to "unblind" the CD47 and allow my immune system to fight it. It is Phase I but that is all they have for my situation right now (I have become platinum refractory). I start this Thursday, tomorrow. oxoxoxo
Hello I’m in the same boat. Have same symptoms as you, had scan yesterday and was confirmed today it’s back 😟 had rising Ca125 on zejula si it didn’t work for me☹️ This is my 3rd go round with chemo in 18 months .. sure hope yours goes better for you🙏🏻
Will say prayers and fingers crossed 🙏🏻 Hugs🙏🏻
I will be starting on combination of Doxil and Avastin. 1rst week then 2weeks after Avastin alone and so on for 6 cycles !
If anyone has been in these drugs , could you let me know if you lost your hair?? Thanks
Feck it! I’m sorry that you’re facing a 3rd round of chemo. I haven’t had that combination yet so I’m no help. I’m wishing you strength and patience. Set yourself up for this chemo with lots of the things you like. Plan to pamper yourself. Get subscriptions to TV streaming services, like Netflix. Think about ways to make it as comfortable as possible and plan as many distractions as you feel able for.
Hi there. I'm sorry that Niraparib did not work for you either. It sounds like you have had a really hard time over the last 18 months. Do you mind me asking how much your ca125 rose while on zejula?
I hope your new regime is more successful. I have taken both avastin and doxi (Caelyx in UK) without losing my hair so at least that's a plus. Sending you lots of good wishes for your treatment xx
Hello, good to hear about No Hair loss, I had previously used cold cap with my other chemotherapy’s and was lucky enough to keep my hair .. so after all that didn’t want to start this regime and then lose it😉. My Ca125. Started at 3. Then. 8. Then 11. Had Ct scan and the found mass by Colon and bowel. So will once again start chemo☹️ March 2018 My first was incidental finding during routine hysterectomy ( Fallopian tube). ( Ca125 was 28. )6 rounds Carbo/tax. Ca125 down to 3. Then January 2019 surgery for bladder lift another incidental finding ( Ca125 was 5 ). 6 rounds of Carbo/ gemzar. .. then put on zejula for maintenance (August 2019). Ca125. 3. Scan clear. September Ca125. Was 8 Now Ca125. is. 11.3.
Thanks so much for responding, I’ve been pretty depressed since found all this out yesterday. 🙏🏻😟🙏🏻 Sue
I'm not surprised. It sounds like you've had a bit of a roller coaster ride over the last year or so with lots of surprises along the way. Sending you lots of love and support. Please rest up and be kind to yourself. Sian xx
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