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.

[Frenchhouse3 in reply to LochLevenLass]

Hi LochLevenLass

Thank you for replying, I did ask my Onc about going back on Olaparib but he said there wasn’t funding to go back on it? I’m wondering whether this varies depending on where you live or whether there is a trial for long term Olaparib like Katmal is on?

I’ll definitely ask him and also if I could pay for it privately, though I think it will be beyond my means.

All the best,

Love Denise

[LochLevenLass in reply to Frenchhouse3]

Hi again Denise,

I had thought that patients could go back on Olaparib after chemo for a recurrence, if they had responded well to the two years of it after front-line treatment. However, looking on Target Ovarian Cancer website, they say patients only get it once. It looks like the funding approval for repeat olaparib in UK may have been withdrawn. Probably Katmal will know more about this.

Hoping that you can get back to stable & good health.

Best wishes, Fiona

[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

[Frenchhouse3 in reply to Lizz49]

Hi Lizz49,

Thank you for your reply, I feel less alone knowing someone completely understands how gutting it is to reoccur after such a long period, but I guess, on the other hand we’ve been very lucky to have had this.

My Onc said originally that I wouldn’t be offered any maintenance drugs. I will ask about Avastin!

Your positive attitude has inspired me to feel more hopeful and who knows we may end up NED again one day but as long as we can all keep going in pretty good health, maybe living with cancer is not as awful as I had been thinking.

I know there is a new drug called Ellahare which sounds promising too for the future.

Thank you for the hugs and sending you some too!

I’ll start planning some little day trips and making the most of feeling well; great advice.

Stay well too,

Love Denise xxxxx

[Katmal-UK]

Hi Denise. Reading your post was almost like reading the beginning of my journey. I was diagnosed 3b in October 2007. I had carbo and taxol but with addition of Avastin on atrial. I stopped taxol after cycle 4 due to neuropathy. I had a remission of nearly 4.5 years. I then had my first recurrence, was put of carbo and gemcitabine and had a severe allergic to carbo on cycle 3 (grade 3 anaphylactic shock). However I continued on cisplatin and gem for the remaining 3 cycles. I then trialled Cedaranib and had my second recurrence when I was again given Cisplatin and Gem. I got back to remission and started a third trial in Jan 2014, this on Olaparib. I’m currently 11 years 6 months in remission. It’s hard I know, but try to stay positive. I know how devastated you will be feeling but put to the forefront of your mind that OC is a chronic disease with lots of treatment out there and new ones coming along all the time. I wish you well and am sending you a big hug xx

[Frenchhouse3 in reply to Katmal-UK]

Hi Kathy, I just spoke with my Consultant’s registrar and he said I had a good overall response to chemo but still a lot of cancer remaining on my peritoneum.

I’ve asked for Olaparib again and would only be able to get it privately. The Reg. said only a small study done on people taking it second time and only one positive result.

However, I told him how well you have done on it although you didn’t have a break from it. Can you remember what the trial you were on was called please?

Denise xxxxx

[Katmal-UK in reply to Frenchhouse3]

Yes, I was on the SOLO2 trial. I’ve now moved to ROSY-O which is a ‘rollover’ study. I’m also being included in a new international study ‘How long is long enough’ which is looking at patients from 50 hosps worldwide who have been taking Olaparib for 5+ years. The results will be available in the summer. Kathy xx

[Frenchhouse3 in reply to Katmal-UK]

Wow, that’s wonderful Kathy!

Thank you for the info, I’ll pass it on to my Onc.

I’m really hoping I can have it again! Xxxxx

PS Are you still continuing Olaparib? X

[Katmal-UK in reply to Frenchhouse3]

I hope you do, I’m a strong supporter of Olaparib!

[Frenchhouse3 in reply to Katmal-UK]

Me too, I know it worked for me last time xxxxx

[Frenchhouse3]

Thank you Kathy for your kind message.

Our journeys do sound similar, I agree. I didn’t realise you had severe neuropathy on Taxol too.

Whilst on Olaparib, I felt it really worked and would love to go back on it but not available to me now according to my Onc due to cost.

I’m hoping and praying to have a good remission again until something new comes along. ( I believe new ones are trialling )🤞🤞🤞

Kathy, are you still currently on Olaparib as I was telling my Onc about the trial you were on?

Will keep you updated.

Thanks for the hugs, lovely to know you are still clear after all this time

Gives us all hope!

Love Denise xxxxx

[Dales-Rambler]

Hello Denise

Just wanting to send you good wishes and positive vibes at this time.

Like you, I recurred at 4 and a half years after the initial Carbo/Taxol, (but without the PARP which wasn't an option for me back in 2015) on completion of chemo.

More surgery and Carbo/Taxol early 2021 with 18 months of Rucaparib until I coulnd no longer tolerate that.

I'm still NED almost 4 years later, with no worrying issues and feeling great, but I still remember the gut wrenching despair I felt when first told it had come back.

It does get easier with time, but there's always a little bit of nervousness when I get my bloods done (next one due next week 🤞)

Kind regards

Sally

[Frenchhouse3]

Hi Sally,

Thank you so much for replying. I’m so pleased for you that you’re having a second, long remission, that’s wonderful news.

It does give me a lot of hope. I do have a little bit of visible cancer left though my CA125 back to a normal level.

I’m hoping I can still have a good remission despite this but would have been more relieved if the scan had been clear.

Still, I will try to keep positive as the Onc. nurse said this is still possible.

All the best for your blood test next week 🤞

Love Denise xxxxx