hi, so had my spleen and tail of pancreas removed 21/09, 2 weeks in hospital, 3 days at home, 14 hours in A&E, followed by another week in hospital 😥 wow, this one is tough and I was struggling to find my ‘bounce back’
Saw my lovely oncologist on Wednesday and his words were ‘I don’t really know what to do with you, as you have no cancer’
WHAT????
So was going to try and talk him into letting me back on Niraparib but he said ‘it’s done its job’
Choices were
Nothing- watch and wait 😳
Back on Niraparib- not worth trying as he will keep it for future if it comes back again and he’ll use it on a trial 😊
Chemo - only 4 sessions and caelyx and another but I can’t remember its name!! 😁
Once again we came skipping out of his room with big grins….that didn’t seem right when we thought about it and have chosen the chemo!!
Just need to get this surgery drain out so we can crack on with the chemo.
He certainly found me some ‘bounce back’
I’m not holding my breath that it won’t be back, but for now I have no cancer!!! And he’s never said that before!
(Now just need to stop questioning things like ‘how does he know’!)
sorry, rambled on a bit but I know you lovelies will ‘get it’
Ali x
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That's wonderful news Ali and I'm soon glad you've got your bounce back. This cancer crap is certainly one physical and mental rollercoaster isn't it. Good luck with the chemo, Kerry
That is fantastic news!!!! Good luck with chemo. Be sure to use lots of lotion on hands and feet and do mouthwashes with either salt water or bicarbonate and water to help with mouth sores. Xx
Hi Ali, amazing news after such radical surgery. Do you mind me asking what stage you were when you were referred for surgery and what prior treatments you'd undergone prior to the surgery? Do you have the BRCA gene? Well done.
hi 3c HSGOC diagnosed October 2017, full debulking plus appendix November 2017. 6 chemos, and then on an immunotherapy trial. CA125 started to creep up and recurrence Dec 2018 confirmed with 6 more chemos (trial was stopped completely as it was deemed a failure)
Then went on Niraparib April 2019, with no side effects, but in May this year CA125 started on the move again. CT found a lesion on my spleen (which had been there before but the chemo/Niraparib had kept it in check) PET scan confirmed that was the only bit 😊 and the rest is history!
I am BRACA2 and CA125 is down to 20 at the moment x
HI, that's quite a journey you've been on. You've done so well 👏
I have same diagnosis and stage 3c discovered in November 2021 after sudden onset of severe ascites. Had 4 rounds of chemo and 3 of Avastin prior to hysterectomy, BSO and radical debulking including appendix. Finished with further 2 rounds of chemo and Avastin. Started PARP in July and avastin every 3 weeks. Couldn't tolerate full dose of PARP. CA125 was doubling every 3 weeks from August was down to 18, now up to 121. CT shows nodularity in left upper abdomen. I am now on full dose of PARP but not tolerating it well. Having CA125 checked again next week.
wonderful news you have given me confidence In surgery. So happy for you.
I’ve got relapse OV HGS 4a grade, affecting my liver slightly the masse between and my spleen has 5cm cancer on ‘top’. Was offer debunk surgery taking 10 hours and 2 weeks in hospital. Negativity from surgeon (my age?)
I decided on chemo first just had 3rd cycle and scans this week. Hoping !!
Wondering how you are coping without a spleen? On daily Penicillin ? What injections is needed ? Any worries re infection?
Hoping you don’t mind my asking as I might have to make a decision soon and knowing what is in front of me will help me.
hi, I hope the chemo is going well and the scan is good.
I had the 10 hour op and the 2 weeks in hospital too. I won’t lie it was tough to start with but once they got me up and moving it was bearable. I then had an infection so had another week back in.
I take low dose penicillin twice a day, and apart from that it’s all ok. The chemo seems to have been a bit tougher too but maybe that’s because I have no spleen? I don’t know!
I’ve just finished the 4 chemos on Friday and am now just in the ‘getting over it’ phase.
I am mindful of infection risk, not sure I’ll be on a plane any time soon, but I feel I need to still do things otherwise ’it’ wins!!
I hope you get a good scan result and can make a decision on surgery or not, let me know if I can help in anyway xx
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Update
Update on my mum's PPC diagnosis
Quick catch up with a question. 
ACT QUICKLY
Niraparib 8 months in - and an update from NICE
