Next steps on recurrence: Hello Ladies, I hope... - My Ovacome

My Ovacome

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Next steps on recurrence

Esmerelda101
Esmerelda101

Hello Ladies, I hope you are all feeling as well as you can be. Can I ask for a bit of advice? Diagnosed PPC Stage 3c Nov 19, finished first line chemo just Carboplatin (reaction to Taxol after 1 session) last May. Full debulking surgery in March, NED in June, as BRCA1 went straight onto Olaparib. CA 125 Levels started rising in October and now 100, to cut a long story short Jan scan showed 3 areas of cancer, 2 that are 5mm near Liver and Spleen and enlarged lymph in stomach. I’ve been offered some choices, stay on the Olaparib and monitor, start Caelyx/Carboplatin on 24/02 or do nothing. I feel well and am healthy so no way will I do nothing and let this disease beat me. Should I be looking at any trials available at this stage, trust in a new chemo regime which I think my onc would prefer or give Olaparib further time? Anyone else been in this position? Putting on the brave face for family and friends but on the inside my thoughts are like scrambled eggs! Thanks Bex xx

29 Replies

Hi Bex Sorry to hear you are facing a recurrence. It's always difficult to know what to do but it is a personal choice. What does your 'gut feeling' tell you to do. Has your oncologist recommended a preference? I personally would ask my onc what would be their choice and also whether there have looked at any clinical trials you could be considered for either alongside the current treatment or after. I know I have always been guided by my Oncologist who once they knew I was 'up' for a clinical trial followed up my 2 recurrences with trials (I have now been on 3). I wish you nothing but the very best, sending you a big hug, do keep us updated as to how you get on. Kathy xx

Thanks Kathy, so kind to respond, oncologist had consent forms for chemo ready so think that’s her preference. Will start the discussion about trials as well. It’s just such a relief to hear where there is life there is hope and that is what all you lovely ladies on here are proof of. I’ll keep you posted. Stay happy, hugs. Bex xxx

Hello Esmerelda

Sorry you find yourself in the position of having to choose. It’s looks although the olaparib isn’t doing the job so perhaps the chemo on offer would be more effective.

I have been offered a trial but it means travelling on public transport into London probably twice a week which I’m not happy to do at the moment. You may be lucky enough to be near a trial centre.

Talk to your oncologist again and best wishes with whatever you choose.

Kathy. x

Thanks Kathy, Yes you are right, I suppose it’s just hard giving up the Parps when I thought they were the miracle meds! I’ll look at trials around here. Stay well and safe. Bex xx

Hi Bex. Sounds like a tough decision but it doesn’t seem like the Olaparib is working so I’m not sure what staying on it would accomplish except that it might be better to delay chemo a bit so that your body can tolerate it better? There are trials combining PARP inhibitors with other agents. Maybe you could do one of them. Good luck with your decision.

Esmerelda101
Esmerelda101 in reply to delia2

Thanks Delia, I’ve read a little about the combination of Parps with other agents, maybe this would be something to push for but after reading lovely comments from you all, bring on chemo next week. If I’m lucky enough I’ll be there for lunch, first time I’ve been out for dinner in a long time 😀 xx

Hi Bex. I'm so sorry about your recurrence. I would just like to echo what Delia said. I personally wouldn't be happy staying on the parb as it looks as if it's not working. Try and get on a trial if not an option I would start chemo. Let us know how you get on. I know how upset you must feel as I have just gone through my first recurrence. Stay strong I know it's easy said than done. We are all here for you anytime 😘 xx

Esmerelda101
Esmerelda101 in reply to win_56

Thank you, main fab news from you is that you’ve come through your first recurrence, just makes it a little bit easier knowing it’s not just happening to me and there is another journey to do but all worth it in the end. Knowing and seeing the support on here from you all is a great comfort. Xx

Hello Bex, sorry you are having to go through this specially when you thought you had it licked. I went through same thing. Long story short. Had surgery, then 6 months taxol and carboplatin. All was good for 1 year then spot on liver showed on scan, 6 more months chemo. Then 6 months later scan showed liver good but now spot on spleen and 6 more months chemo. When last scan showed all good Dr put me on Rubraca immediately because I too carry the mutated Brac gene. It’s been 2 1/2 years I’ve Been on 1200 mg daily of Rubraca and scans all good. So don’t give up, stay positive and strong. God Bless you.

Pat

Esmerelda101
Esmerelda101 in reply to Tabor

Thanks Pat, gives me the inspiration to just get on with the chemo and look to the future xx

Tabor
Tabor in reply to Esmerelda101

Bex if you trust your Dr take his/her advice. Pray God to guide them and you in right direction. I fully trust my Dr I call her my hero because I know she had The Lord guiding her to take care of me. I’ll be praying for you!!

Hi Esmerelda, I'm really sorry the olaparib hasn't worked for you. It sounds like the best bet would be to go for the chemo offered and have a look at trials during or after, let your onc know your interested in trials. Also there are other maintenance drugs out there like Avastin and there seems to be a school for thought that mixing 2 drugs can work better for example they are trialling olaparib and cediranib on the Icon9 trial. All the very best. Sue xx

Sorry to hear you have a recurrence. I am in a similar position, though this is my second recurrence. I went on to Niraparib after second line chemo (carbo/caelyx) back in 2017. Last year my CA125 crept up and a scan in September showed a new 2cm tumour. My oncologist recommended I stay on the PARP as the tiny bits of tumour left after chemo hadn't grown at all, despite the new one appearing. I had another scan in December which was exactly the same, and my CA125 had stabilised, so carry on was the recommendation. However, my last CA125 a couple of weeks agao was higher than it had been since I started Niraparib, so I have another scan on Sunday. So, wait and see, but carry on with medication had been right for me last year but I fear things are moving again. My oncologist had mentioned surgery last year as there was only a single troublesome tumour, or more chemo as I'm still considered platinum sensitive. Like you, I feel well, so having no treatment to deal with this recurrence isn't something I'd accept either, but I would try chemo again and/or surgery again. There's nothing to stop you investigating trial options - you can still go down the chemo route if there's nothing suitable. Whatever you choose has to be right for you, and your circumstances. Wishing you all the best. x

Esmerelda101
Esmerelda101 in reply to Numi

Thank you, apparently surgery not an option this time due to the dispersal area but no reason why the drugs can’t work. Stay well and wishing you all the best for your scan, let me know how it goes. Xx

Hi BexI had similar PPC first time, also BRCA1. Olaparib wasn't on offer until first recurrence. So when I got recurrence, I had caelyx/carbo which got rid of it all (like you a few areas of cancer). Then I was put on Olaparib.

So I would go for chemo if it was me. Nobody likes to choose chemo but its worth a shot. And yes scrambled eggs is a great phrase, describes it beautifully!

Wishing you all the very best

Siobhan x

Cbyrdie
Cbyrdie in reply to Wonnie

I agree if it were me I’d go to the chemo, and you’ll likely be put back on parp when finished. Best of luck Esmerelda❤️

Esmerelda101
Esmerelda101 in reply to Wonnie

Thank you, I’ll probably be more like poached eggs from chemo! I think that’s slightly better than scrambled! Xx

Teeny tumors. You can do this. You are healthy. Get best advice possible do the research brcas have the best chance on parps but do what works for you. In any case the fat lady is no where near singing. Most of us are living w cancerous cells roaming around teeny tumors appear but dont worry you can stabilize and slowly reduce w a good protocol. Hugs from france

After stopping the Parps in readiness for chemo I may be the fat lady singing. It’s lovely to have an appetite albeit probably briefly. Hope that French sun is shining on you. Xxxx

Good morning. I would personally hate to be given a choice. How can you judge what is best? I have had 3 lots of chemo since 2015 and am currently in remission at the moment but taking Olaparib. I was advised each time that what they're offering was the best for my particular case and was happy to go along with it. So far, their choices have worked.

Perhaps you can get some help with the pros and cons of each treatment before you make any decision.

I wish you all the best.

Recurrences suck. I’ve had 2 of them. It’s certainly a personal choice how to move forward, but I think I’d try the new chemo and see how you respond. Praying for you and all my OVCA sisters. 🙏

I would try carbo or switch inhibitor to niraparib. Being brca1 positive niraparib is extremely effective

Hi Bex sorry to hear that you have recurrence. I am in a similar situation, diagnosed oc in late 2018, stage 4 with spread to peritoneum. Chemo, debulking in 2019 then started avastin in Sept 2019 for 12 months. After chemo and surgery my ca125 was down to 3 from over 1000. Throughout avastin my ca125 was rising but ct scans were clear. At the end of last year I had a PET scan which showed recurrence in 4 areas of peritoneum. Onc advised against rushing into chemo and recommended an oestrogen blocker - letrozole. Blood test a couple of weeks ago showed ca125 at 106. I am due a ct scan within the next month and then a review of my treatment plan. Like you I am worried and like you I am fit and well. I know how we feel in terms wellness is important but I think my onc places too much importance on it. I was diagnosed at stage 4 because I had a pleural effusion other than that I was fit and well - no symptoms and bundles of energy as usual. I am going to push for more chemo after the next ct scan - I have faith in chemo but not so sure about treating my cancer with an oestrogen blocker. I will follow your treatment plan with interest. Good luck and stay well x

I’ll keep you posted, have decided there is more evidence that chemo will be effective rather than chancing the Parps further when it could be doing nothing. Oncologist seemed to prefer chemo whilst fit and well to try and keep me that way. Only symptom last time was ascites but I did manage to get to 9 litres before draining. Would prefer not to relive that experience. All the best for the scan, let me know how it goes xxx

Hi. My mom is in a similar position. Ca125 doubled, now 411. Olaparib stops worked. Last CT scan, before 2 weeks, showed 6mm tumour in her liver and one disseminate under skin of belly. So, she will be on chemo, just don’t know yet which. From carbo had allergy reaction.

Esmerelda101
Esmerelda101 in reply to Sanssa

All the best to your Mum, I hope they get chemo sorted soon. Xx

Sanssa
Sanssa in reply to Esmerelda101

Thanks a lot! All the best for You as well!Cant stop thinking about all this things... very worrying.

Hi beaut, this sounds similar to me. I have had carbo taxol start 2016, full debunking and ileostomy, followed by avastin for a year, then 2 years Ned, carbo taxol start 2019, then onto olaparib. My ca125 has started rising and is now 103. My ct scan shows no new tumours and the ones we know about are stable!! My oncologist says we can watch and wait, or go back on chemo? It’s such a difficult decision. I’m not really ready for giving up on the parp that is keeping my known tumours stable to treat something I can’t see. My worry is having the chemo then what?? I’ve been in touch with the Royal Marsden and have arranged a video call for this Tuesday to talk about trial options, before, during or after this chemo. I see they have a trial where cedranib and olaparib are being used together, also a trial using immunotherapy pembroluzimab?? I was also thinking maybe just changing the parp?? I have read on here ladies changing from one parp to another? Or a new parp after chemo?? I am also like scrambled egg, lol. What is the right choice!!! I think the thing to keep thinking is there are options. Let me know how u get on beaut. Sending hugs, xx

Hi Millie, I know it’s so tricky to know the best possible course. Thanks for info about trials I think I need to be more pro active, have chemo pre assessment tomorrow so I’ll bring it up then. Did you arrange meeting with Royal Marsden yourself or was it mediated through onc? All the best for your appointment. Bex xxx

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