Nov 17 3c HGSOC, BRACA2, surgery, chemo, immunotherapy trial, failed trial, 1st recurrence, chemo followed by Niraparib since April 2019 with no side effects at all, CA124 9-13. Was convinced I was ‘the one’ it was going to work for but in May CA125 went up by 3. Nurse wasn’t concerned, I knew!! Then another 5, still she wanted to wait (was only 18!!) but I knew. Then 30 so I had a CT scan. Found a lesion on my spleen so now thanks to my lovely oncologist we have a plan.
PET CT, found nothing else anywhere. Splenectomy, along with the tail of my pancreas, then probably some more chemo (yay!!)
Thank goodness my CA125 is an indicator as I feel amazing with no symptoms at all.
Freaked to start with, but once back ‘under his care’ I have calmed down and ready to get on with it, albeit a little scared!! He has said if they get this out successfully he should get me cancer free. I know that’s a big statement to make….but he’s never said it before so hanging on to that to get me through!
wish me luck 🍀
Ali
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Doglover1410
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Dear Ali, your remarkable and so very positive and your right they have a plan and l believe he will cure you. Good luck with everything stay so very positive sending love & hugs SheilaFxxx
Your doctor’s positive support, your will to live, and most importantly with God, all things are possible, I will add my prayers for a complete recovery.
Good luck with treatment. Your Onc sounds like really positive for you, wouldnt make such a statement otherwise. Can I ask you what your CA125 was initially and did you ever have Avastin?
Hi at the beginning it was 456, came down to 24 on chemos, then the Niraparib got it down to 9! Recurrences are only 30, but thats why it seems to work for me. No never had Avastin x
Hi Ali. Please keep me updated with your progress. Positive vibes are important so they say and you certainly seem to have them. I think we all live in fear of recurrences however sharing experiences here helps to dispel much of the worries x
Sorry for your reoccurrence but praying things keep going good. I too am positive for Braca mutations. Had a reoccurrence to liver and another to spleen. More rounds of chemo and that was almost 5 years ago. I’ve been on Rubraca maintenance pulls since then. Hugs to you with positive outcome.
I wish you all the luck in the world! This is just a temporary blip, your oncologist is optimistic so hang on to that and of course you have the ‘teal army’ on your side. Xx
So sorry to hear about recurrence. But it is a good sign that you are feeling well anyway. Good luck with the next step...it sounds like you have a good team around you.
When you know you know. My mom's recurrence was also her gut feeling and she asked to have a CT which did find enlarged lymph nodes. Her CA125 was only about 12 I think. She has a larger hernia that kept growing and it was one of the reasons she thought this doesn't seem right. No other symptoms. Although the lymph nodes weren't the cause of enlarged hernia she still had a reason to get it checked. I don't think CA125 is a great marker for my mom since it doesn't blow up like some so anytime you feel something is off for a lengthened while, it's worth asking. It sounds great that you have a good plan ahead! Sounds like a good medical team. Quick question, what is the difference between a PET Scan and a CT? Is there one? Just wondering as I see the terms interchanged often.
Thank you, I think the PET CT sees more than the normal CT. This is the first time I’ve had one as they wanted to check that surgery would be feasible. Thankfully nothing else showed up so we’re good to go! Hope your mum is ok x
Hi Ali, sorry to hear you’re going through this again, but really pleased to read you have a plan which you and your consultant are confident about. We are too just waiting for a plan for my mums recurrence. You are doing incredibly well, sending love and I’ll look forward to reading how well you are continuing to do after treatment! Laura xx
It’s tough to have a 2nd recurrence but you’re in a good place. I was on Olaparip since May 2019. Unfortunately CA125 isn’t an indicator for me so things were bad before I realised. I’m having chemo for 2nd recurrence now but have lots of cancer inside & outside of bowel, on liver and some lymph nodes. I’ve had two of my 6 chemos. I don’t really know what my prognosis is but I’m just taking it day by day.
The very best of luck with your treatment. Things sound good for you. I hope you get through the treatments without too many symptoms.
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Recurrence with Ca125 of 108, awaiting 2nd line chemo. Would appreciate anybody wanting to share similar experience, suggestions or help.
Recurrence for clear cell ovarian cancer
Recurrence confirmed
First recurrence
