Well, I met with my beautiful Oncologist and my CNS this Thursday to go over my last scan and discuss my future treatment.
It was not all the bells and whistles, which I had hoped for. They had not run a CA-125, which is a good marker for me, and was 16 at last month’s test. So I missed not knowing this.
But the scan showed that the last peritoneum nodule had shrunk to a teensy 7mm, but it was still there!
I had expected it to be gone!
My Onc was dismissive though, saying this could just be some very crippled cancer cells, and not to worry, and happy to send me off to next week’s Niraparib appointment.
I received a print out of the scan. It was extremely thorough, and the specialist had gone back to compare this one with the two previous scans, from October and January.
Here’s where it got depressing. He noticed another nodule near my belly button, that was not picked up in the last scan, but he picked it up when he looked for it. It had grown just a tiny bit from 9 mm to 10mm.
It was not visible in the first scan, so it is new. In his conclusion to the report, He recommended further investigation, but my Onc made no mention of it.
I am now extremely nervous and will talk to my CNS on Wednesday, when she is back in the office and will request a CA-125 test.
I am happy to think that the Niraparib will rid me of this latest intruder, but the fact that the intruder arrived after I started Carbo/Caelyx makes me want to cry.
I was feeling terrific. I do feel terrific and have been walking further and further each day, planning once again to expand my business, but now the future seems less assured.
Thankfully, I am usually optimistic and I know I will get in a better frame of mind soon. Just disappointed now.
Hope you all are well and enjoying Passover and Easter celebrations with family.
I will let you know about my further adventures with Niraparib.
Best wishes,
Laura
Written by
Lindaura
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Your post sounds positive, especially viewed from the consultants perspective. I think we are easily knocked off kilter with this disease, but like you say tomorrow is another day so on wards and upwards. Looking forward to your posts about the Niraparib as this is what l am hoping for after my present regime. Good luck and thinking of you..
Sylvia
Never thought l'd say it's too hot for me in April!
Hi Laura. I know you have been waiting to get on Niraparib and hopefully you will feel more positive once you start. Given that you’re BRCA positive it should do the trick for you! I’m sorry your results weren’t perfect but your onc wasn’t worried. Good luck with Niraparib. I hope you are able to feel well on it and that it keeps the beast at bay forever!
Hello Lindaura. I can fully understand where you're coming from. Sometimes I think we have this hope in the back of our minds that everything may just be ok and then when it isn't it completely throws us. I was recently sent all my histology reports from last year to forward to the COC in London. I read through them and was gutted when I saw that after my first three chemos when I went back to theatre for the second time the histology said there was still evidence of cancer cells which hadn't responded to chemo. I couldn't believe it as I felt sure that the chemo would have wiped everything out. But we pick ourselves up and carry on because we have no other choice and that's what you will do. Are you in the the Parp inhibitor facebook group? Theres lots of great info on there about women on Niraparib and how well they're doing. It'll give you inspiration to get on a parp and feel more positive I'm sure. Take care and good luck xx
Yes, I just need to pick myself up and dust off the disappointment and get back to the program.
I won’t go on Facebook, because of all the meddling and scamming going on in that world, but I have good access to research and this forum, so I will keep up that way and let everyone know here how I am managing side effects, etc.
Hi Laura, I had one left that measured 4mm but my lovely onco doesn’t seem worried so that’s good enough for me! Got another appointment on Wednesday to sign up to the Niraparib (don’t know if that means I actually start on Wednesday or he orders it then!) I’ve had the big appt to talk it through, so am ready for it!
I went onto the Facebook group but came off as it wasn’t for me...filled up my news feed as wasn’t doing me any good, but each to their own!
Thank you, Doglover. I will. I’m in Ireland. Maybe rules are different here. I’ve no idea. My oncologist mentioned Olaparib six months ago. Maybe he’ll have a totally different plan for me when I see him on Tuesday. Everything depends on how well or badly the chemo worked, I suppose.
Do what you were going to do, my best way of beating this beast and any other is to not let it beat me!
I find the best way for me is to get on with life, at the moment look after grandkids and do up houses to almost the point of exhaustion! Don’t suggest you do, but it works for me😀
Yes! I was worried about all that, because part of my business is doing up flats and houses and it is quite intense physically, and if I get sick again or need heavier Chemo, the biz will suffer again...
Sorry the results weren’t as you wanted but hopefully the Parp will hold these stable - I know you’d set your mind on being NED at end of second line but this disease has a habit of not playing by our rules - wishing you well x
Hi Laura, I can only re-iterate what other ladies have said. There’s every chance Niraparib will sort you out. I am on the Facebook group and there are ladies on there in your situation whose disease has totally disappeared and ca125 reduced once they are on the parp. I’ve been doing well on Oliparib - the side effects are hardly there now. My oncologist grins from ear to ear when he talks about parp inhibitors and says they are a real game changer for ovarian cancer and brca ladies as you know respond well and was the reason I got it for maintenance so although the blooming gene caused our cancer it can now be our friend in fighting back. Good luck with it all xx
It’s so hard ... be kind to yourself! Let us know how you get on with Niraparib. On Oliparib I had some sickness first week but haven’t had it since so don’t panic if you have some side effects to start with - good luck xx
Laura, sorry it wasn’t exactly what you wanted to hear but best luck for the next stage. Hopefully it will keep it stable. I think NED rarely happens other than after the first line and that’s how it played out for me too. I like the ‘stable’ now.
Good luck with niraparib. It’s disappointing when you were expecting to be NED again but it sounds as if it’s very low volume disease and the niraparib will hopefully keep it stable.
I don’t know why our teams don’t always mention everything in the scan reports and after a similar experience to you, I now always ask if there’s anything new.
I wish you all the best an up and down time for you. I have never been offered to even see my scans do you ask for them ?my chemo unit will not give you your blood results. I have to ring nurse special its who is at a different hospital to get them.
Sorry to hear that things aren’t as you’d hoped, Laura. Hope the Niraparib and your positivity combined will see off the beast. Wishing you all the very best
Those appointments with "all good, but...."! I could live without those. I am no doctor but would be optimistic that the Niraparib would rid of of your new visitor and also rid you of the one that grew one mm. When I started Olaparib, I had "seeds" as my onc called them (had just finished Carbo/Doxil and thought I would be NED) with ca125 of 9. In two months on the PARP, it was a ca125 of 5 and I was NED. Wishing you luck at your next appointment Laura and that your positivity remains. oxoxox Judy
Hi Laura, I haven't been NED for nearly 5 years but the Cancer did stay dormant for 3.5 years. As you say, being BRCA +ve is in your favour for PARPS so you've reason to stay hopeful.
Hi Laura, I am so sorry to hear your latest news. It is quite annoying when they do not tell you everything, especially when it is reported. I would question this, no wonder you feel I suppose angry/despondent initially.
I do love your optimistic attitude, it’s something we all need when we are in this position. I have my scan on the 30th (mid cycle), to see if the secondaries in my spleen have shrunk. Like you I am on Carbo/Caelyx and I am hoping it has worked as I am going to ask if he will remove my spleen.
Your positive attitude will carry you far, and I certainly look forward to hearing about Niraparib, as I am going to ask if I could go on this when I finish this cycle.
Take care, sending you lots of love 💕 hugs 🤗 and positivity xxxxx
Have you already had debulking surgery with your first line treatment?
My spleen was removed when I was 19 years old due to another condition and I have been fine without it, although I always carry broad spectrum antibiotics in case of serious infections.
But, a lot of ladies have their spleens removed in their debulking surgery.
It’s a big operation as your spleen cleanses your blood, so there are probably a lot of important venous connections to it.
However, I hope that yours can be removed without too much misery.
And I hope that you can join us on our new regimen of PARP Inhibitors.
Hi, Lindaura. I'd like to think that the nodule near your belly button was already there and just missed on the scans. Between the chemo in your system and now Zejula.....your body will continue to snuff out those little buggers. I've been on Zejula for 6 months now. Feel really well. My CA has been creeping up in the last 3 months, but, onc is watching it.
Keep up with your positivity and just move forward with strength! We are in a good time where everyday there is more and more available to us.
Sorry you didn’t get the NED you so wanted Laura but sounds like your onc is pleased with the results of your chemo and like others have said the PARP will more than likely kick the rest of the aliens back into space!
Keep your positivity and dust yourself off for the next round of kicking ass!!
I wish you all the best with your PARP journey and hope you get few side effects and that it works well for you xx
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