2nd recurrence 😢

[Doglover1410]

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

[delia2]

Sorry to hear about the recurrence! At least Niraparib worked for three years. The PET is reassuring though. Sending hugs!

[LesleyGB in reply to delia2]

Sending lots and lots of luck and keeping things crossed for you. x

[Doglover1410 in reply to delia2]

Thank you 🙏🏻

[Doglover1410 in reply to delia2]

Thank you 🙏🏻

[0462County]

Hello Ali

Hope all goes well for you. Love and hugs xx.

[Doglover1410 in reply to 0462County]

Thank you 🙏🏻

[Sashay2020]

Hope all goes well with your surgery and treatment. Wishing you all the best. 🙏🏽Sashay

[Doglover1410 in reply to Sashay2020]

Thank you 😊

[Realistic]

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

[Doglover1410 in reply to Realistic]

Thank you, I try!! x

[Lizzieanne]

I wish you luck and a successful outcome x

[Doglover1410 in reply to Lizzieanne]

Thank you 😊

[sonya50]

Wishing you all the luck in the world this works for you ..hugs..x

[Doglover1410 in reply to sonya50]

Thank you 🙏🏻

[Newbery3]

Well your oncologist sounds lovely and positive 😊 and pet scan is good so at least you know what you got to do! Good luck x

[Doglover1410 in reply to Newbery3]

He really is 😊 thank you x

[Clair266 in reply to Doglover1410]

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.

[Doglover1410 in reply to Clair266]

Thank you 🙏🏻

[Carpediem68]

Wishing you lots of luck. It sounds like a good and speedy plan. Keeping everything crossed for you! xx

[Doglover1410 in reply to Carpediem68]

Thank you 😊

[RoseMS]

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?

[Doglover1410 in reply to RoseMS]

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

[RoseMS in reply to Doglover1410]

Thank you. I was 5000 on diagnosis, 6 after chemo. Am treated in London, where are you?

[Doglover1410 in reply to RoseMS]

Wow that’s great! I’m in North Essex and am treated at Addenbrookes

[RoseMS in reply to Doglover1410]

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

[greeneverything]

Your consultant sounds good. Well donex

[Tabor]

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.

[Doglover1410 in reply to Tabor]

Thank you. I’m trying to convince him to let me back on the Niraparib but he knows me too well and is saying he’ll wait and see! x

[Summergold2]

sending luck and good wishes !!!

[Doglover1410 in reply to Summergold2]

Thank you 🙏🏻

[belle1958]

Drs don't make statements like that readily so all sounds super positive! Wishing you well x

[Doglover1410 in reply to belle1958]

Thank you, I hope so! x

[Mrsmerlot]

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

[Doglover1410 in reply to Mrsmerlot]

Thank you 😊 x

[Nicky100]

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.

Nicky xx Much love

[Doglover1410 in reply to Nicky100]

Thank you lovely x

[Luci22]

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.

[Doglover1410 in reply to Luci22]

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

[LouieB123]

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

[Doglover1410 in reply to LouieB123]

Thank you 🙏🏻 hope your mum gets a plan soon too x

[Hidden]

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.

Anne 🤗

[Doglover1410 in reply to Hidden]

Thank you Anne, wishing you success too xx