Re-occurrence

[Frenchhouse3]

Hi Everyone,

I’m needing some hope and advice right now if anyone can help.

I was diagnosed with OC back in May 2019. I had Paclitaxol and Carboplatin with radical surgery in the middle plus 2 years of Olaparib.

All was well for four and a half years and then my Ca125 crept up from 16 to 23. I was told nothing to worry about. I begged for a three month blood test as opposed six months and glad I did as it had then risen to around 800!

I was then given Paclitaxol and Carboplatin again. I was fine with the Paclitaxol but had an allergic reaction to Carboplatin. I had the first three but even with the help of lots of steroids, only managed 25% in session 4 and 60% in session 5, for session 6, Paclitaxol only.

My Oncologist thought Cisplatin as an alternative would be too toxic with Paclitaxol as I was experiencing quite a lot of neuropathy in last three sessions.

My CA125 was back down to 27 after session 5 and haven’t had it checked after session 6.

However, I was told after my final scan that I’d responded really well again to the chemo though there was still some visible cancer remaining.

I was told by my nurse that due to my previous long remission, I could possibly have a good stable period and would be monitored.

I’m trying to be positive but I’m feeling quite devastated right now.

Has anyone had similar?

Thanks for reading this rather lengthy post.

Denise x

[delia2]

Hi. I’ve had some similar experiences. My first recurrence was eight months after frontline and after doxil(caelyx) and carbo I still had a small nodule left. I went on Olaparib for three years which got me to ned and then had a year afterwards before my second recurrence which was low volume. I also reacted to carboplatin which I was having by itself but my hospital has a special desensitization unit where I was able to receive carboplatin (12 hour days!), but there was a very small bit of cancer left at the end. Now after seven months I have another low volume recurrence and will be starting Elahere/ mirvetuxemab in two weeks. Since you had such a long time to recurrence hopefully you will have another long time. What about maintenance? I hope you have a very long respite.

[Frenchhouse3 in reply to delia2]

Hi delia2, thank you so much for your response, it’s given me hope!

I wish I could have Olaparib again as I’m sure, like with you, it did prevent reoccurrence.

The Onc originally said no maintenance but I’ll ask him about it again on Thursday.

I asked to have the Carboplatin more slowly but they just gave me a ton of steroids and added on an extra half hour, so only one and a half hours. It’s so annoying as I’m sure I’d have coped over a longer period, I got to 60% on chemo 5.

I hope we both get a long remission now, that would be wonderful!

Denise xxxxx

[SuffolkJen]

Hi Frenchhouse3

I’m really sorry to hear of your recurrence.

I have read on this site many times what your onc nurse said about a long remission often indicates another long remission after recurrence.

I’m sure the lovely ladies on this site will be posting with their experiences of a long remission soon, in the meantime I wish you all the best xx Jen

[Frenchhouse3 in reply to SuffolkJen]

Thank you so much Jen, I hope so! My husband is in a care home with very early onset Dementia and I try and take him out for a daily walk and coffee. He would be lost if I wasn’t around anymore. Xxxxx

[SuffolkJen in reply to Frenchhouse3]

I’m sure he would be 🥲, but you know his needs are being met in the care home. I just hope you have support around you as you need looking after too! Sending a virtual hug and will keep you in my thoughts xx Jen

[LochLevenLass]

Dear Frenchhouse3,

So sorry to hear that you’re going through a recurrence. Would you not be able to get Olaparib again, if you responded so well to it after frontline & didn’t recur while on it? I know it’s usually given for only two years following frontline but think it’s long-term after a recurrence.

Wishing you all the best for another long period of stability.

[Lizz49]

Hi Denise,

I’m sorry to hear of your recurrence and the issues you’ve been having with chemo. It’s tough dealing with a recurrence for anyone but after so long clear it’s very hard. I had a recurrence after 5 years and despite more surgery and chemo I’m now living with OC, low grade serous.

Always thought in the past this would devastate me, and initially it did, knowing I was no longer curable and would always live with it in some way. But over recent months I’ve learned to accept it and am looking at the positives, for me I’m on Avastin as maintenance and that has put the brakes on the cancer and my CA125 has gradually dropped down to 38, I have another blood test tomorrow and next infusion Tuesday so am hoping for another drop.

It sounds like despite the issues with infusion you do respond well to the chemo, and am sure there are still a lot of different options left for you in the future. It’s a case of living as well as you can with it, staying healthy and positive, making nice plans and having complete trust in your oncology team. For me, long term stability is the best I can hope for and I’m well and living a good life with it.

I hope you get another long period of stability and you may reach NED again, never give up hope! Sending you hugs from one OC fighter to another Xxx