Quick update

[Doglover1410]

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

[doodoolatrice]

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

[Lyndy2]

Aww! That’s fantastic news Ali! I am so pleased for you ❤️

[Doglover1410 in reply to Lyndy2]

thank you 🙏🏻 x

[delia2]

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

[Doglover1410 in reply to delia2]

thank you 🙏🏻 I had this combination last time so have the hand cream at the ready! x

[Mammi]

certainly get it, that’s great news Ali!Onwards & upwards then 🤗big hugs DeeX

[Doglover1410 in reply to Mammi]

thank you 🙏🏻 x

[Sashay2020]

Thank you for sharing your good news, Ali. I’m very happy for you. 🙂

Sashay

[Doglover1410 in reply to Sashay2020]

thank you 🙏🏻 X

[0462County]

Brilliant news, hope the chemo goes well for you xx.

[Doglover1410 in reply to 0462County]

thank you 🙏🏻 X

[Mysticmeg123]

well that’s fantastic news!! Long may this continue. Good luck with the chemo. 👍🏽

[Doglover1410 in reply to Mysticmeg123]

thank you 🙏🏻 x

[ruthg55]

Brilliant news ... keep it up & that smile xx

[Doglover1410 in reply to ruthg55]

thank you 🙏🏻 x

[Doglover1410]

thank you 🙏🏻 X

[Newbery3]

yahoooo 🥳🥳🥳brilliant news! Enjoy it and celebrate x

[Doglover1410 in reply to Newbery3]

thank you 🙏🏻 x

[bananayo]

Fantastic news 💕xx

[Nov5]

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.

Tam

[Doglover1410 in reply to Nov5]

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

[Nov5 in reply to Doglover1410]

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.

All the best



[Doglover1410 in reply to Nov5]

wow , sorry you’re not tolerating the parp. Which one are you on? I was lucky, I had very few side effects, mostly sun sensitivity.

Hope they find a plan for you too x

[Nov5 in reply to Doglover1410]

Thanks.

I'm on Olaparib.

Going to push for further surgery, but oncologist tells me only done in specialist centre and they're swamped with NHS referrals.

[NewtonEmma1900]

Very good news. Long may it continue. Go out and ‘grab’ life!

[Doglover1410 in reply to NewtonEmma1900]

thank you 🙏🏻 X

[Laz66]

how fabulous xxx

[Doglover1410 in reply to Laz66]

thank you 🙏🏻 x

[Starbarn]

what wonderful news . I can hear the excitement in your post. These parps are giving us all a lot of hope. Good luck

[Doglover1410 in reply to Starbarn]

thank you 🙏🏻 I loved being on it and the safety net it provided x

[Hidden]

Excellent news! Enjoy your life now.

Anne 🤗

[Doglover1410 in reply to Hidden]

thank you 🙏🏻 X

[Towergirl]

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.

[Doglover1410 in reply to Towergirl]

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

[Towergirl in reply to Doglover1410]

thank you for the info, good you are coping well and finishing Chemo. Good luck xx